Semi Colon

"Complicated"

2012-01-26T15:15:00.000-06:00

Well, well, well, it's been an interesting few days since I posted last. Turns out I was right about needing more steroids! I felt pretty crummy all weekend - shaking, heart going fast, pain really bad. I kept taking my heart rate and blood pressure as instructed... and on Sunday night, my heart rate went up 35 beats per minute any time I stood up. That's a pretty bad change, and it wasn't responding to fluids. So Monday morning, I called Endo Doc, who instructed me to start right away with an extra dose of steroids while she prepared to get some IV fluids for me at her office. I went to her office later that day... and thankfully, by the time I arrived, the steroids had kicked in, and my heart rate, while still high, was more stable and didn't change when I stood up. So we decided fluids would be superfluous - so YAY no needles! ;)

So what's going on? I had been so stable for so long. Endo Doc's theory is this: patients who have chronic pain have higher blood levels of cortisol (steroids). The extra steroids are needed for the body to be able to cope with the stress of dealing with that much pain. My pain is flaring very badly, and since I have no ability to make extra steroids, my body can't compensate, and my heart starts to go nuts, I shake, and my body can't stay hydrated. She also thinks that I may additionally have something called dysautonomia, dysfunction of my autonomic nervous system, caused by my autoimmue problems. This means that your nerves are damaged and have trouble regulating body temperature, sweating, heart rate, blood pressure, blood sugar, and digestion. This would explain a lot of my random symptoms, and it's something a neurologist would investigate further if I continue to have these issues. She said that I am such a "complicated" patient with so many interconnected issues that it's hard to tease out what issue is causing what problem.

Endo Doc instructed me to increase my steroids quite a bit for a week, then taper down over the following two weeks. I also FINALLY got her to write me a prescription for a steroid shot to keep on hand in case I can't keep my steroid pills down. It is very important to have on hand, and she's talked about giving me a prescription for this every time I see her for, um, the past 20 months, but somehow it never makes its way to my pharmacy.

Since we think that my adrenal issues right now are out of control due to my pain being out of control, she called over to Rheumatology, and they saw me without me having to wait a minute! I should also mention that Endo Doc was double booked, but still spent a good 45 minutes with me. The Rheumy PA recommended a trial of a new pain med, one that used to be used for seizures, but is now used for chronic nerve pain. I am not super excited about this med, but it's something I've discussed with doctors before, and it's time to try SOMETHING to give me some relief. Rheumy PA told me that my Rheumy doctor is "out of ideas" for how to help me because I'm so "complicated."

So... all in all, Monday was an interesting day, to say the least. I am so thankful for God's goodness in all this... I avoided an IV, the doctors responded promptly, were willing to think out of the box, and took time out of their busy schedules for me. Most important to me, they were NICE to me and did not dismiss my problems, even though they do not totally understand what is going on. Since Monday, my heart has settled down substantially on the higher dose of steroids, and I am feeling MUCH better! I started the new pain medicine last night... and today was better, pain-wise, so I really hope that the med ends up working for me! I have to slowly titrate up to a therapeutic dose over a few weeks. Also, thankfully, MY WOUND IS HEALING! It is looking smaller to me, which is fantastic! I first noticed the change on Monday... interestingly, we increased my methotrexate shots two weeks ago... wondering if that might be helping suppress the autoimmune stuff so the wound can heal! I have lots to be thankful for, even though my health issues are "complicated," it's simple to be thankful for the little blessings God brings!

Hannah ;)

The Beat

2012-01-21T09:27:00.000-06:00

Sorry, it's been awhile again! I've been pretty busy doing really fun things and living life (that's a good thing).

My wound still isn't showing much progress. It was looking bigger. Now it's back to how it was a few weeks ago. Honestly, we haven't made

significant progress since Thanksgiving-ish, which is disappointing. I am still trying to drink protein shakes every day, since my eating is still kinda spotty at times. My joints are doing fantastic! I have had a little bit of stiffness for the past few days, but overall, they are the best they've been in MONTHS. Yay! *happy dance, which I can now actually DO, since I'm not stiff*

I have been experiencing some annoying issues - fatigue, dizziness, shaking, and heart racing - in addition to increased muscle pain. At first, I just thought I was tired from the arthritis flare, then realized that the flare was over, but I was still having these episodes. I noticed that during these episodes, my heart was going really fast... Hmm. Early last week, after taking my pulse for a few days in a row, and finding it to consistently be in the 120s (my normal heart rate is about half that!), I called the Endo Doc. She didn't call back, so I tried increasing my fluids (added 2 liters of half-strength Gatorade with added salt daily), which helped a little.

I also accidentally took extra steroids on Monday. I know, stupid. I have a really good system for taking meds so that this doesn't happen...I just didn't follow it on Monday. Oops. Anyways, my heart stopped racing, I stopped shaking, I had way less pain overall, and I felt really good. Interesting.

Endo Doc finally returned my call on Wednesday this week, while I was still feeling good from the extra steroids.
She said that if my heart rate was that high that I should come in for IV fluids or go to the ER.

Um, if it is that serious, why did it take her a week to get back to me?!? Anyhow... with the extra steroids still in my system, I was fine. I am supposed to take my blood pressure and pulse daily in both a seated and standing position. If the heart rate goes up 15-20 beats per minute when I stand, that means it's time for medical intervention.

She thinks that the symptoms I've been experiencing for the past few weeks are fallout from the stress my body was under during the arthritis flare. So, in the future, I will need to take extra steroids whenever I flare, as well as any time I get sick - even with a cold. Hopefully, this will prevent me from having the adrenal issues I've been fighting for the past few weeks. She hoped that the one day of extra steroids would be enough to get my body back on track...


This is exactly what I look like when I'm downing Gatorade

however, I started feeling yucky again Thursday, and crashed Friday afternoon (complete with a pretty dramatic change in heart rate - but don't tell Endo Doc because I did NOT go to the ER!). ;( Two liters of Gatorade later, I was feeling better, and my heart rate dropped 25 beats per minute. I am so thankful that my stomach behaved so that I actually absorbed the Gatorade, AND that just drinking was enough to make me feel more stable tonight! I can't count the number of times I've needed IV fluids because my stomach couldn't absorb what I drank by mouth.

So that's the beat on what's going on with me! I think I may need to go up on my steroids for a while to get my body back in equilibrium - and get my heart rate to stay down! I am thankful that God is in control of this (and every) situation. I hope that things settle down very soon...without needing to get IV fluids.

Hannah ;)

Glory Through Weakness

2012-01-05T23:37:00.003-06:00

I continue to have an open wound... it is not really changing much, which is frustrating. I cauterized it the other day, and my skin had a weird reaction. I only touch the silver nitrate sticks, used for cauterization, to the wound. It never touches the skin surrounding the wound. So I was rather shocked to find that the skin in an "O" around the wound decided to slough completely off, leaving me with more raw spots. Yeah.

This actually happened a month or two ago after Misinformation cauterized the wound. This led to an extra trip to Dr. Saturday to assess the damages. I assumed she had done something wrong... but I guess not. The silver nitrate is not harmful to healthy skin - Dr. Saturday rubbed a stick on his bare arm to demonstrate. So we really have NO clue why this happened. Very weird.

I have sort of decided to give the wound til the end of February to heal... then if it's still not better, I will look more seriously to the surgical options. Trouble is, we don't know if the surgery would "take" since it's believed that my body is basically attacking the wound area. We shall see if the increased meth helps calm down my body so I can heal. My joints are doing A LOT better, praise God! Still having more pain than I'd like, but it's a whole lot better than it was last week, so I think this flare is on its way out, thankfully!!

Having sort of embarrassing issues like an open wound on a, um, sensitive area, joints that don't work right, and a body that tires easily does two things for me. First, it reminds me that this world is not my home, and that this body is a temporary house for my soul. Second, it keeps me humble... I have no delusions that I am a great, grand, important, amazing person. I'm reminded of I Corinthians 1:26-29. Paul says, "For consider your calling, brethren, that there were not many wise according to the flesh, not many mighty, not many noble; but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things to the world to shame the things which are strong...that no man should boast before God."

Paul says it in a similar way in II Corinthians 4:7 - "But we have this treasure [the gospel - the light that comes from having a right relationship with God] in earthen vessels, so that the surpassing greatness of the power may be from God and not from ourselves." He calls our bodies "earthen vessels" - jars of clay - something totally ordinary and humble. So God uses something kind of boring and unimportant to do something great - so that the outcome is clearly from Him, not the chamber pot. ;)

God didn't call too many brilliant, important people to be His children. When He uses the weak and foolish to accomplish His work, it's obvious that their "power" isn't from themselves - it is GOD working through (or in spite) of them. And so He is more greatly glorified in my weak, scarred, battered body, because it's apparent that I am nothing special - but He who is at work in me is. I can't take the credit for what happens in or through my life. There is no room for me to boast about my strength - I have none! But I can boast in a couple things: in the Lord, and in my weaknesses.

"But by His doing you are in Christ Jesus, who became for us wisdom from God, and righteousness, and sanctification,and redemption, that, just as it is written, "Let him who boasts, boast in the Lord."" (I Corinthians 1:30-31)

"He has said to me, "My grace is sufficient for you, for power is perfected in weakness." I will rather boast about my weaknesses, that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties for Christ's sake, for when I am weak, then I am strong." (II Corinthians 12:9-10)

What an amazing God, who would choose to show His great love to us, His foolish, weak children, and then USE us, His earthen vessels, in great ways to His glory. How is He using YOUR weaknesses for His glory right now?

Hannah ;)

Joint Effort

2012-01-03T09:29:00.003-06:00

Yesterday I went to see the Rheumy folks. It ended up being a 2.5+ hour appointment (mostly waiting). I didn't mind, because I was very grateful that people were putting their heads together and trying to think big-picture in deciding how to treat my arthritis. This Joint Effort (haha, get it??) honestly is pretty rare in medicine these days. First, I saw the PA, who had just spoken with Endo Doc. Endo Doc was NOT in favor of increasing steroids. For one thing, we have worked SO hard to get me to the level of steroids I'm at right now, and two, she thinks that I had joint issues even when on a much higher dose of steroids. Thirdly, yesterday was the first day in three weeks that my joints were NOT visibly swollen (this happens almost every single time I go to the Rheumy). I'm very happy about that, but it makes it hard to convince the doctor that yes, I really am having joint issues. ;) There are labs that they check for inflammation - but mine were normal. I had to explain that mine have always been normal, even during a bad UC flare-up - my body is just special like that! The only sign of inflammation is that I'm still running a low-grade fever.

Then I had to wait again so that the PA could talk to the Rheumy doctor. THEN the doctor came in and we basically started over again. In typical fashion, she asked me if I thought my symptoms were stress-related (she always is thinking that I am depressed/anxious). She said that Christmas is a very stressful time for most people. Um, it's like my favorite time of the year and I love being able to spend time with my family because they are awesome. So... no, don't think it's stress related. So then she said it was probably "good stress" related. Okay... sure. ;/

The end point was that I will up my meth a bit because I'm still on a pretty low dose of it. I also got to talk PA school with the PA for quite a while, and she had lots of good tips and advice!

Thankfully... I actually had a fantastic day yesterday and was hurting a lot less! So maybe this flare-up is on the way out... we shall see! I continue to remain thankful to God for using my surgeries to get rid of the abscesses and give me better health.

Hannah ;)

2011 by the numbers

2011-12-31T22:05:00.000-06:00

3 ER Visits

2 Surgeries

14 Days on TPN

23 Days in the hospital

17 Pounds Gained

80 Days on Edgar the Wound VAC

34 Wound Care appointments

16 Uncomfortable days with a 1 inch diameter tube in my surgically reopened anus after my April surgery

187 Days since I've been able to shower without worrying about getting a wound dressing wet

187 Days spent with an open wound on my backside

7 Average number of days between ostomy appliance changes

10 Doctors who were involved in my care this year (not counting all the "miscellaneous" doctors I saw while in the hospital)

10 shots of methotrexate

8 MRIs

3 Opinions considered before embarking on this year's surgical adventures

5 months since my last ER visit!

180 days spent studying for the MCAT

6 Physician Assistant Program Applied to

4 Interview invitations

2 Acceptances to PA Programs

Countless labs drawn, doctor visits, pills swallowed, dressing changes, people who've seen/poked my wound, packages of gauze and tape and dressings and other wound care supplies, wound cauterizations, hours spent on the phone with the insurance company. Then there's the countless nurses, doctors, patient care techs, lab techs, housekeeping people friends, and family who helped me in some way on my journey this year...

I feel so incredibly blessed that the Lord has, once again, brought me through a year of challenges and difficulties. I had thought in my heart that I could never, ever go through surgery again. God took that fear and doubt and showed how great He was - that He can give me the strength to go through the very things I was so sure I could never face. And when I can go through these things, it's so clearly in His strength, not mine, and so He gets the glory.

I learned that God does always give me peace and the ability to endure... but He often waits until the exact moment that strength is needed, and not a moment before. And while you wait for Him to provide, you must trust that you don't need the ability until He chooses to give it.

I still continue to struggle daily with eating and stomach issues, chronic pain, arthritis, adrenal issues, and fatigue. But I AM much better than I was at the beginning of 2011. The Lord has answered so many prayers. I can eat again and my body is doing a much better job at assimilating nutrients. I no longer have chronic nausea. My abdomen is now free from infection. My intestines are now free from inflammation. My energy is better. I've been able to taper to a lower dose of steroids. I've stayed out of the hospital since July. I have not required any IV interventions whatsoever since then. All of these things represent huge strides in my health as well as incredible answers to prayer.

Right before Christmas, I ran into a family who has been faithfully praying for me for years, and I mean, prayer warriors who plead before the throne of God. I am so deeply humbled by the love of Christ that they show me - they barely know me, yet have been interceding on my behalf. One of them lifted his little daughter up on his knee and told me that she prays for me daily. I was completely blown away and overwhelmed and encouraged and touched... what an incredible testimony and example they are! I know that this is just ONE example, and there are many, many people praying... it just astounds me! May our great Savior get the glory.

God led me to apply to PA school by closing some doors with jobs and school this spring. I never, ever would have dreamed that this year would find me trying to decide between two excellent Physician Assistant Programs! He also granted me another wonderful blessing I never imagined this year would bring. What grace! However, I must say that if God chooses to take these things away, if He leads me down a different path, then I will choose to be content in that. What I want most in 2012 is to be where He wants me to be.

Happy New Year!

Hannah ;)

Wound Stuff & Happy News!

2011-12-30T23:45:00.005-06:00

Today I went to see Dr. Saturday. He came in with an intern and tried to explain my history in less than a minute. "She had some kind of inflammatory bowel disease, had a colectomy, had a J pouch that went bad and had that removed, but they left in the anal canal and sphincter, so she got pelvic abscesses and I had to remove her anus and now she has a chronic wound. Oh, and she also is adrenally insufficient and has arthritis." Not too bad! ;)

He thought the wound is still the same size. I really think it's a few milimeters smaller, and I spend more time looking at it than he does. Haha. Wednesday marked the SIX month anniversary of my last surgery. I'm kinda wondering if this wound will ever heal, but oh well. He continues to push the surgery option to try to close up the wound, and I am continuing to hold out for no surgery. The wound isn't causing any problems, it's just annoying. I don't have any guarantee that my body would heal after the surgery to close up my wound, so I'd rather just wait it out. He is okay with waiting if that's what I want to do. I don't have to go back to see him for a MONTH now! Yay! My leash is getting longer. ;)

I told him about how yucky I've been feeling - shaky, joint and muscle pain, and now some fevers. He suggested doubling up on steroids for a few weeks. After leaving his office, I decided it would be best to call the Rheumatologist peeps and get their take on what I should do. After all, Dr. Saturday is a Colorectal Surgeon, but the Rheumy specializes in arthritis. My arthritis is definitely flaring. I've been blaming the weather and stuff for the past couple weeks, but even though it's beautiful outside, I'm still swollen and hurting.

So I called on a Friday afternoon before a holiday to see if they could help me. Greaaaaaat timing. ;) Thankfully, I got the awesomest nurse ever, Dana. She got me an appointment on Monday morning at a time when the PA, Rhuemy Dr, AND Endo Doc will all be in the office. That way, everyone can weigh in on what the best course of action would be. We are thinking of a short course of prednisone (a steroid), but we need to see what Endo Doc thinks about that due to my steroid issues. This is a rarity for doctors to put their heads together, so I really hope this works out. Mad props to Dana for setting this up!

Happy news.... my friend Patt, who had her 5th surgery of 2011, is going home tomorrow! She looks fantastic and I pray that this surgery restores some quality of life to her! Today when I visited her, I asked how many surgeries she's had for her Crohn's disease... she thought this was #18. Um, makes my 4 surgeries look pretty puny! She has been through so much.

And some verrrrrry exciting news... My friend Kendra was declared CANCER FREE today!!! Praise God! She has been a complete trouper and tough as nails throughout her chemo. Her feisty, persevering character has shown through as she tackled tests, treatments and side effects head on... all while continuing to hold down a job. She still has to do one more treatment to help her stay in remission, and she will have to have labs and scans with annoying frequency, but what GREAT news!

Today I'm thankful. God is good. He is so good. Much better than we deserve. From cancer-free friends, to release from the hospital with hopes of a better life, to doctors and nurses helping me take care of my health issues, to the beautiful weather... I am so blessed.

Hannah ;)

Steroid Woes

2011-12-27T22:55:00.000-06:00

As many of you know, I am adrenally insufficient - my adrenal glands do not make the small amounts of steroids that are necessary for life.

The steroids your adrenal glands normally make keep your body functioning - they control your heart beat, blood pressure, blood sugar, response to stress, etc. When you take large amounts of steroid medication (like I did for my ulcerative colitis), your brain quits telling your adrenal glands to make steroids because it would be superfluous. Usually, your brain and adrenals wake up after you taper off the medication... but mine did not. This means that, in order to perform vital functions (like, you know, maintaining a good blood pressure) my body depends on the steroid pills I take three times a day.

Be Alert. The world needs more lerts.

We discovered I was adrenally insufficient when I was trying to taper off steroids after my surgery in 2009. I got so sick - I was basically having adrenal crisis after adrenal crisis. My muscles were so weak I could barely walk, my whole body shook, I was dizzy, sweating, hurting, nauseated, and non-functional. I had to get a liter or two of IV fluids every other day, and even with this, I was so incredibly sick. After a very scary episode in February 2010 where I went completely unresponsive while getting IV fluids, they upped my prednisone to 40 mg and added in another steroid (florinef) to get me stabilized. This was a very extreme move to put me back on a high dose of prednisone, but the endocrinologist I was seeing didn't know what else to do (and apparently didn't know what he was doing... but that's another story).

Here's a Sciencey picture. This is hydrocortisone.
It's helpful if you speak Organic Chemistry.

In April 2010, I saw a new endocrinologist. After changing to a faster acting steroid, hydrocortisone, 3x/day, things began to settle down, although I was still on about 3 times the amount of steroids that a normal person my size should need (yet I had no symptoms of having too much steroids). I continued to have adrenal crisis episodes here and there, some of them requiring a trip to the ER to get rehydrated and back on track. My issues were very difficult to control or predict, which was incredibly frustrating for everyone involved. With my tummy, we never can tell how much of my pills I absorb from day to day (or even from hour to hour), which results in very inexact blood levels of steroids. With help from meds to slow down my tummy when it's acting up, and permission from my doctor to double up on steroids anytime I suspect I'm not absorbing or that I'm starting to have an adrenal crisis, we finally reached a much more stable place with my adrenal stuff.

This, my friends, I am not.

This spring, I was able to taper down a bit more after my third surgery. I now take an average amount of steroids for my size. Now it just remains to be seen if I can get off steroids altogether. A few weeks ago, I began an attempt at tapering on the steroids again. I took a bit less steroid every two days. Each day, I felt a bit worse, culminating on the Sunday morning before Christmas when I totally crashed - dizzy, shaky, etc - and decided that the taper wasn't working. So I went back to my normal dose. Then I got a cold. I ended up completely crashing on Tuesday and Wednesday, feeling just awful. Finally, on Wednesday before Christmas, I realized that I probably needed some extra steroids. I took some, and felt like a new woman within 45 minutes. Note to self: I need to take extra roids when I get sick. Your body normally makes extra steroids to cope with the stress of being sick. Since my body doesn't make steroids at all, I have to take extra roids when I have surgery or even dental work done. You're not supposed to have to take extra 'roids for just a minor cold, but apparently my body plays by its own rules, as we all well know. ;)

Unfortunately, since then, I have continued to struggle with off and on shaking, dizziness, fatigue, feeling like my heart is pounding, etc. My arthritis has been flaring and my knees resemble large citrus fruits at times. ;) As sometimes happens when I flare, my eyes are super dry and irritated, so I just pour eyedrops in my eyes and can't wear my contacts. This truly causes me great mental anguish because then I'm doomed to wearing my dorky glasses and no make-up, which is just socially devastating. ;P

I'm also having a "pain flare" with my muscle pain, too, and nothing is really helping the pain. It's so weird because I'll have some good hours where I feel fine and do normal stuff, then all of a sudden, I'm hurting really bad and can't stop shaking and just curl up in a little ball. Now I'm dumping off and on, too, which really isn't helping matters! I am not sure what is going on, but it's annoying! ;) Hehe. Need to tell my body to settle down! Seems like I had a similar pain flare last December/January, so maybe I'm allergic to winter? May it never be!

Hannah ;)

An Empty Cup

2011-12-21T18:57:00.005-06:00

This week finds me in a pretty good arthritis flare. I am really achey and have spent a LOT of time sleeping, but I'm still wiped out and hurting. I'm also fighting a cold, which probably doesn't help! I don't mind getting "normal person sick," because I know that I'll actually feel better in a few days!

I went to the pain doctor yesterday, which turned out to be a very interesting and unusual experience. I arrived, signed in, and started reading. I'm re-reading the Lord of the Rings books at doctor's offices this month. On Monday, I was waiting at the chiropractor, and he called me back JUST as Eowyn was being threatened by the Nazgul king... yeah, great timing, chiropractor! Anyways, at the pain dr, the waiting room began to fill, and not a soul was called back. I was called back up to the desk, because apparently they think I have no insurance (see Monday's post for more gory details), so they wanted to copy my card for the 4th time. I also mentioned that three people were standing up because there were no more chairs. I mean, this is the pain clinic! Three people had canes - they obviously hurt and need to be able to sit! So they brought out more chairs. And then, still more chairs as more people arrived. I looked around for a water fountain - alas, there was only an empty water cooler - and I had forgotten my water bottle.

An hour went by (Aragorn, Gandalf et al confronted Sauron at the Black Gate), and one person had been called back. I went up to the front desk and politely inquired about how long the wait would be. The nurse told me that the doctor wasn't actually in today, so the nurses have to take everyone's vital signs and then give them their prescriptions. I thought, don't they take our vital signs and give us the prescriptions every time I'm here? Anyways, eventually (after Samwise rescued Frodo from the Tower of Cirith Ungul) I got called back. There were THREE nurses back there, seeing one patient at a time. So I'm really not sure what the delay was! They took my vitals, then asked me for a urine sample.

"What, you're drug testing me?"

"Yes, what narcotics are you on?" asked the nurse.

Oh. They aren't kidding!

I told her, then said, "Um, there may be a small problem. I don't think I can go."

That morning, I was dumping a bit, so I had to take my meds to slow down my stomach, which has the side effect of slowing down my already dysfunctional bladder and drying me out. I also had not been drinking water. I also just don't pee very often. I tried valiantly, but returned with an empty cup.

The nurse frowned and informed me, "The doctor said we can't give prescriptions without a urine sample."

"I'm really sorry! I didn't know I was going to have to give a sample... Can I come back later?" Then I started spilling my life story. "I am missing seven and a half feet of intestine and I have bladder issues and so I really only pee twice a day. If I drink more, it just comes out my ostomy. I'm really sorry, but I can't go right now, but I can go drink a bunch and come back this afternoon!"

The nurses all stopped what they were doing and stared at me. "Oh, honey, we will just make a note in your chart! We won't inconvenience you, you poor thing! You can always give a sample next time."

Way to milk your issues, Hannah! ;)

Please pray for my sweet friend Patt, my guardian angel on earth. On Tuesday, she underwent her FOURTH surgery for her Crohn's since March. She has had such a terribly tough year and needs all the prayers possible. Please pray especially for good pain control and encouragement for her heavy heart.

Hannah ;)

If You Give Your Insurance Info to 7 Doctors...

2011-12-19T17:22:00.000-06:00

Q: If you give your new insurance info to seven doctor's offices by phone a few days prior to your appointment AND have them copy your new insurance card when you arrive in person, how many of those offices will bill the correct insurance company on the first try?

A: One. As for the other six:

One will correct their mistake after you call to give them your insurance info for the THIRD time.

One will state that you have no insurance coverage (while still mysteriously being able to bill your new company, might I add).

Two will have a receptionist tell you your old coverage terminated and they never received your new info, even though you watched this exact same receptionist scan your card at your appointment two weeks earlier.

And the last two will continue to bill your old insurance for 5 months, regardless of how many times you call their office and give them your new insurance info again.

I've described in other posts the amount of time I spend on the phone. Here's how the process goes:

1. I get a statement (not a bill) from the doctor's office. This lets me know what charges they are submitting to your insurance company. I check to make sure that: 1. I actually received the services that they are charging for (you would be shocked at how often they bill you for stuff that never happened!) and 2. they are billing the correct insurance company. I usually have to call them multiple times to try to resolve issues with either item 1 or 2 (frequently BOTH!). After several phone calls, they send the statement with the correct charges to the correct insurance company. Whew!

2. Now my insurance must processes the claim. Then they send me an EOB (Estimate of Benefits). This typically states that this claim has been denied coverage for some (false) reason or another. Then I must call the insurance company. I site chapter and verse from the Policy Brochure the reasons that this claim should be covered. The customer service rep just parrots back whatever the EOB says. I ask to speak to the supervisor, who does the same. I note their names and the date. Just to make sure, I repeat this process at a later date after a session with my voodoo doll.

3. When I still get no help from customer service (I have yet to have any problem corrected over the phone), I write an Appeal letter. This is a somewhat involved process of siting 16 digit claim numbers, CPT codes, revenue codes, and Policy Brochures. I season the appeal with logic and common sense, something that United Healthcare seems to lack. ;) After a month or so, I get a letter back with a ruling one way or the other. God has granted me a pretty high success rate in

these appeals letters. If they rule to cover the claim, they reprocess everything, send me a new EOB, and send the doctor payment.

4. Then, eventually, the doctor will turn around and bill me for the remainder. I honestly have rarely gotten to this step because I've been going through the above process for every. single. doctor's visit, test, lab, or wound care since I changed insurances in AUGUST.

I'm not sure how the health care system is supposed to work... but I'm pretty sure it's NOT like this! This has been an exercise in endurance, patience, and persistence!

Catching Up...

2011-12-13T20:47:00.000-06:00

Hello, hello! Um, I feel as though I need to reintroduce myself, since I've taken such a long break from blogging. I have actually written a couple posts - I'd compose them, then as I went to publish, my computer would disconnect from the web browser. I'd get frustrated and go do something else, forgetting to go back and re-edit and post. Yeah, I really have problems focusing when I... um, hey, where was I? So anyways, I'm back! ;)

The other thing is that I don't really have anything new to say. I still have chronic autoimmune illness (surprise, surprise!), and my wound still hasn't healed. I made some progress for a few weeks, but now I'm plateauing again. Dr. Saturday cauterized (chemically burning to promote healing) of the wound on several occasions. After a few rounds of this, and a possibly overzealous cauterization by Misinformation, I told him I thought I could cauterize myself at home every three days. That way, I could make the long trek to the hospital every other week, instead of the semi-weekly visits he envisioned.

So now I get to cauterize my own perineal wound. Some of you may be wondering how I am able to cauterize a wound that lies deep in the crags of my tush. It's sort of a contortionistic/circus performer sort of event involving a full length mirror as I lie twisted on the floor looking somewhat like a puppy chasing his own tail. Note: this is not a picture of me. I actually lay on my side. And I'm brunette.

I cauterize the wound with silver nitrate sticks, which look like matches on long sticks - here's a pic I got off google images. If you wanna buy some for home use, click here. I'm sure they will come in handy for all your unwanted granulation tissue personal hygiene needs.

So, now that I've added "Cauterize my own wound resulting from a surgery to remove my anus" to the list of unlikely truths I can use the next time I play "Two Truths and a Lie," I spend my free time wondering what I'm going to do with all the free time I'll have when I don't spend time each day caring for an awkwardly-placed wound.

I had a bit of drama with my belly for about two weeks, culminating in pretty severe pain on Saturday night through Sunday. It felt like my UC was coming back or something, and that combined with a partial blockage on Saturday into Sunday made me strongly consider going to the ER. On Monday morning, I discovered, after washing it, that my beloved purple water bottle was slimy inside... gross. Hmm... I scoured it with salt, baking soda, scrubbed it out with an old toothbrush, let it soak in hot soapy water for hours, then, when it was no longer slimy... threw it away. No, I jest, not even slime could cleave my fingers from my precious water bottle, so after a period of quarantine, I'll be using it again. But I will implement a daily scrub, because apparently the washing I'd been giving it wasn't good enough. Surprisingly, after 24 hours Slimy Water Bottle free, I was free from the crampy pain in my belly. Boy, did I feel awfully dumb. But awfully relieved.

My joints are overall so much better since starting the Meth. I've done 7 injections so far. My lab work is coming back spot-on perfect, and my white count is the lowest it's been since I got sick, which is FANTASTIC! No more fevers, less inflammation. I struggle with the joints in the mornings and evenings, but in the middle, it's pretty good. I still have really bad muscle pain that goes up and down, but I have lots of meds to keep me comfortable, mostly. I had come completely off my sleeping medicine beginning in August, but my pain increased to the point that I need to take it in order to actually sleep through the pain.

I am cutting back an eighth of a pill of steroids every other day. I'm on day 10 now, and I have to say I'm feeling very tired. I want to give it at the very least 3 weeks try, so we'll see how that goes!

I continue to spend inordinate amounts of time sorting through insurance papers and speaking with billing offices and insurance customer service people who can't pronounce my last name, much less explain my bill or policy to me, and generally trying to get people to do what they should have done in the first place. It's all a part of living in a fallen world, I guess! I constantly have to remind myself to be gracious, and to remember that the person I'm speaking to isn't usually the one who made the mistake I'm trying to get corrected. God is showing me that I am an impatient, angry person. I continually need His help, must be reminded of His grace, and quickly ask for His forgiveness.

Hannah ;)

Honey Buns

2011-11-28T20:20:00.004-06:00

So, exactly 5 months ago today, I had my 4th surgery. Dr. Saturday removed the bit of remaining J pouch and (I hate this word...) anus, and cleaned out my pelvis, which had abscesses in it, leaving me with a 10 cm long, 8 cm deep hole. By the middle of September, after 80 days on a Wound VAC, the hole had filled in, but the skin did not grow in. Then we began experimenting with different dressings. Well, after 9 different combinations of dressings and several treatments with silver nitrate sticks, the dressing I'm using now is a dressing impregnated (that's the wording on the label, I promise) with Manuka honey.

So I'm calling myself Honey Buns.

The wound is starting to heal, finally. The skin surrounding the wound had a terrible reaction to soemthing (who knows what.... basically my skin there is allergic to/irritated by... everything). For several inches around the wound, the skin was raised and red and blistered and peeling and generally nasty. It felt about as good as it looked. Thankfully, it's healing now, which is a huge relief! I so empathize with crying babies. I now truly understand that their tears are from diaper rash.

Overall, I am doing great!! My energy is getting better and better. My joints are so much less stiff and painful. I am tapering off some of my medications since I'm having less pain and issues. I still don't have anywhere near normal energy or anything, but it's so much better! I am so thankful.

Hannah ;)

Happy Thanksgiving!

2011-11-24T12:11:00.000-06:00

I have so many things to be thankful for... family, friends, food, church, home, new beginnings, better health, fall weather... the list could go on and on!

There are some amazing verses that have rattled me a little bit and shown me a truly amazing way of giving thanks. I'd like to share them with you:

"Though the fig tree does not bud, and there are no grapes on the vines,
Though the olive crop fails, and the fields produce no food,
Though there are no sheep in the pen, and no cattle in the stalls,
Yet I will rejoice in the Lord;
I will be joyful in God my Savior.
The sovereign Lord is my strength,
And He makes my feet like the feet of a deer,
He enables me to tread on the heights."
Habakkuk 3:17-19

I know that pretty much everyone who reads this blog has gone through/is going through very hard things. Maybe physical difficulties. Maybe spiritual. Maybe heartbreak in your family. Maybe financial troubles. Sometimes everything around you is falling apart. How do we face these difficulties? Habakkuk writes about unimaginably hard times - it's not just a bad hair day. It’s crops failing and food not growing. It’s having no livestock. He is sitting there, staring starvation in the face.

His reaction, though, in the midst of an absolutely dire circumstance, is to rejoice – to rejoice in the Lord. He calls Him his Savior. He calls Him sovereign - all powerful. He calls Him his strength.

Habakkuk was counting on the fig trees to bloom, for the olives to grow, for the fields to bring forth grain, for the flocks and cattle to still be around. We count on those things, too. We count on our savings, on a regular paycheck, on a pantry full of food. These are the things that we’ve worked hard to produce to provide for ourselves and our family. We're thankful for these things, especially on Thanksgiving.

So what Habakkuk is saying is truly remarkable. He's saying that even if those things all disappear – YET he will rejoice in the Lord, because He is his Savior, sovereign, and strength.
Life is a great gift. The things we enjoy in this life are amazing, incredible gifts. But the point isn't the gift itself. The point, Habakkuk says, is the Giver, God. James 1:17 tells us that every good and perfect gift comes down from above. In the midst of tough circumstances, we trust that He will save us from calamity. He is sovereign – all-powerful and in control of these circumstances. And He is our strength – to give us strength to face situations as scary as certain starvation. He will enable us to do what seems impossible… like rejoice even in the midst of hopeless times.
So today, on Thanksgiving... I don’t know where you are or what you are facing. But we do have many blessings to be thankful for.

But even if those blessings were gone, YET I must choose, like Habakkuk, to rejoice in God my Savior.

Happy Thanksgiving... enjoy the gifts... thank the Giver.

Hannah ;)

An Open Letter To ConvaTec

2011-11-22T18:50:00.001-06:00

Dear ConvaTec,

I am a long-time user of your moldable wafers (Natura Sur-Fit). I really love them – they hold up so well, and I rarely have issues with skin breakdown or leaking (15 months leak-free!). I wear them up to 9 days at a time and can do pretty much anything I want (including swimming and high diving and going down really tall water slides) while wearing them.

One day, I was getting materials ready to change my pouch and wafer. Imagine my surprise as I tried to roll up the lock and roll system on the pouch, only to discover that a Velcro strip was missing! The good news is that I noticed this PRIOR to trying to wear the pouch. That would have been an unforgettable experience.

[Here is a picture of the tails of two pouches. On the right is a normal pouch. You can just barely see the Velcro strip just below the flap. On the left is the defective pouch. The Velcro strip is absent.]

For your amusement, I have enclosed the (unworn) defective pouch.

While I’m on the subject, I would like for you to consider making your opaque pouches actually opaque. They are currently very transparent. Just as I’m sure you prefer to not examine your fecal matter or anus (at least, I assume this to be true), I am not a huge fan of having to look at my ostomy and my own waste any time I change clothes. I know you offer a transparent bag for those ostomates who do enjoy this. I (and many ostomates I know) would welcome a more opaque model with open arms (figuratively speaking).

I heard that you are making new bags which are less plastic and “crinkly” and more cloth-like, which I think will be a great improvement.

Please let me know your thoughts about making the pouches more opaque. I am a 24-year-old with a permanent ileostomy, so I will be utilizing ostomy supplies for (hopefully) many years to come. I truly enjoy using your products and find them to be very durable and comfortable. I would greatly appreciate a more opaque bag, such as is offered by most other ostomy supply companies.

Sincerely,

Hannah ;)

Yeah, REALLY Sweet!

2011-11-16T21:43:00.000-06:00

Today was D-Day. Today, if my wound was the same size, I would be referred to the plastic surgeon for a discussion about my options, most likely skin graft surgery.

The nurse peeled back the sticky honey dressing... and...

IT'S SMALLER!

There are tiny little beads of new skin starting to grow in around the edges.

For the first time in two months, I've made a step in the right direction.

Praise God!!!

The doctor cauterized the wound for the millionth time, and I wandered over to Dr. Saturday's office (with a stinging tush).

Dr. Saturday agreed to take over my wound care from here on out, which will be, like, waaaaay cheaper. And I don't have to come back for TWO weeks!!

We think that the methotrexate is already making a big difference - telling my body to quit attacking me so I can heal. I'm also drinking a protein shake every day, seeing the chiropractor 3x/week, and doing some new supplements. I also noticed a substantial increase in energy last week. Dunno which thing is helping, or if it's a combination of things, or if it's all coincidental. And then the last few days have involved steroid issues, malabsorption of meds, more fatigue, and lots of pain. BUT! The wound is getting better! And I think that the rest of my body will start following suit.

So as I put a new sticky honey dressing on my wound, I began to wax eloquent in my mind. I thought, this is the bee's knees. My wound is starting to bee-hive and life is sweeter than, well, a honey impregnated wound dressing.

Hannah ;)

Shootin' Meth on a Friday Night

2011-11-11T22:16:00.001-06:00

A couple weeks ago, I went to the Rheumatologist. She is interesting. She either wants me to go to the hospital or is convinced that I am depressed. Before you get to see the doctor, you have to fill out this loooong questionnaire about your pain levels, functional ability, energy level, etc. It is a bit of a downer to write all that stuff down! I am admittedly an unhappy camper by the end of filling that form out, so that's probably why she thinks I'm blue!

Anyways, for the past year, they have been unable to do much to treat my arthritis. I had a chronic infection in my belly, and it's not so smart to suppress the immune system when it's fighting an infection. Finally now, however, we have not one, but TWO MRIs that clearly demonstrate no infection! Praise God. I still have a mildly elevated white count and intermittent low-grade fevers. I had a really bad time with my joints last week (the weather didn't help!), too.

So we decided to start a low dose of methotrexate, a chemo drug, once a week. It's used a lot in rheumatoid arthritis and lupus. It's supposed to knock down your immune system enough that it quits attacking you -- ideally without lowering your immune system enough to really hurt you too badly. She did also offer me antidepressants and told me that the methotrexate won't help my fatigue if it's fatigue caused by depression. Lol. No comment.

It should start helping with all the autoimmune inflammation in my joints and muscles. If my wound is not healing because of autoimmune stuff, this hopefully will help that, too!

So... I load up my little syringe and shoot up some meth each Friday night. Here's my shady supplies:

It really looks like yellow snake venom, doesn't it? Yummy. ;) Whenever I'm in the hospital, my mom always brings fun bandaids for all the times I get poked. It's tradition. Rainbow tie-dye and Snoopy bandaids have been my favorites. Thankfully, I found more of the infamous Snoopy bandaids! Yes! Methotrexate can cause nausea, vomiting, mouth sores, headache, hair loss, etc. I was told to expect to feel rotten the day after the shot. Last week, I had a bit of a headache, but that was it. Hoping that this will put my body back on track.

Hannah ;)

"Sweet!"

2011-11-10T17:20:00.000-06:00

Here's the basic formula for wound care posts:

"The wound looks healthy. It (choose one) has not changed in size/is slightly larger. It still is not healing. We decided to try (choose one or two) a different dressing/cauterization. I made an appointment to repeat this process in a week, then drove home."

This week and the week before also followed this pattern.

The doctor told me that I've been very lucky (I say blessed) that the wound has been open since June, yet I have not had a single infection in the wound to date. The longer the wound stays open, the greater the chance that it will get infected.

He started to discuss referral to a plastic surgeon for possible skin graft surgery. Problem is, this won't actually "take" if the wound is not healing for autoimmune reasons. Another option might be a biopsy to see why there's been no healing. A biopsy would show if I have ulcerative colitis in the wound. I see Dr. Saturday next week (click here to see why am I seeing him next week), so we'll see what he says. Hopefully he and the wound care doctor can put their heads together and figure out a good plan.

We are, of course, trying yet another new dressing. This one is pretty interesting. I've had dressings made of algae, foam, cardboard-like dressings impregnated with blue dye that is supposed to kill germs, and dressings, pastes, and powders containing silver, to name a few of the NINE combinations we've tried so far.

A few weeks ago, I was standing in line at the grocery store checkout. The lady behind me had 6 jars of honey in her basket. That was it. I asked her what she was making. She told me that she worked at a vet's office, and they put honey into the animals' wounds. It kills bacteria and promotes healing better than anything else! A friend at church had also mentioned this to me.

So, the doctor brought in a new dressing... it is soaked in honey!!! No way!! I texted my mom about it. She replied, "Sweet."

After pulling the icky sticky dressing out of my wound today for a dressing change, I'm not sure I can ever view the honey pot in the same way again...

Hannah ;)

You Know You Spend Too Much Time Dealing With Medical Billing When...

2011-11-08T13:53:00.005-06:00

Due to all my health issues, I am currently averaging about two doctor's appointments per week. This is actually an improvement from the 4/week I had all summer. Most of my doctors are at least 35 minutes away, one way. Add on to that the wait time and the time with the doctor, and you have a pretty significant time investment just to keep my appointments.

Because of all this, I receive innumerable EOBs (Estimates of Benefits) and charges from doctors. Recently, it's been almost humorous - in the past several weeks, not a SINGLE ONE of these has been correct. I've been billed for services on dates when I was NOT receiving services. I've been billed for services that I never received. I've been billed for office visits that were coded incorrectly and should have been free of charge because they were post-op visits. Three offices continue to bill my old insurance carrier, although I've called each office at least twice (beginning in August) to give them my new insurance information. I've been denied coverage of a new medication after 2 hours and 4 calls back and forth from the insurance carrier and the pharmacy carrier (one insists that it is covered, the other insists that it's not, but both refuse to talk to the other). I've been billed twice for labs that had to be redone because the hospital lost the first batch. I've been denied coverage for certain doctors because they are in association with a hospital, and so my insurance treats an office visit with these providers as an Emergency Room stay and refuses to cover them. And it goes on and on.

Each one of these mistakes represents an inordinate amount of time that must be spent on the phone and organizing papers. I spend at least an additional hour or two PER DAY on the phone dealing with doctor's offices, billing offices, pharmacies, and insurance companies. It's really a full time job! I am so thankful and blessed that my parents took care of the majority of this type of business when I was very sick. It was a burden I could not have borne.

So, You Know You Spend Too Much Time Dealing With Medical Billing When...

You find yourself humming the insurance companies "'hold" song because it's stuck in your head
You have your insurance ID Number and Group Number memorized.
You understand ICD-9 codes, 5-digit procedure codes, and you know and can explain laboratory billing procedure in the state of Texas to insurance reps.
You start recognizing the name and voices of the Customer Service reps for your insurance company
You are on a first-name basis with the billing department of two hospitals and a doctor's office
You use your insurance card more than your debit card

Hannah ;)

What's in Semi Colon's Fridge?

2011-11-05T11:43:00.000-05:00

So... I have a SERIOUS salt problem. I can't stop eating it. I salt salted chips. I love the bottom of the pretzel bag. When cravings hit, I am unable to concentrate on ANYTHING until I go to the store, buy whatever I'm craving, and dig in. I've actually left church and school to go buy pickles. Here is my salty food cravings list:

Claussen Dill Pickle Spears (and sometimes, when it's really bad, I even drink the juice!)
Green Olives
Salt & Vinegar Chips (I don't even like potato chips, but I LOVE the sour/salty combo, sooo, this is way gross, but sometimes I just lick the chips. Don't worry, I don't put them back in the bag once they have been licked)
Lemon or lime slices (with salt)
Chicken noodle soup - the kind from powder, it's so salty and delicious!
Cheetos (the crinkly ones, not the puffs - the uneven surface collects more orange-artificially-flavored-cheese-powdery-salty goodness)

So here was the scene upon opening my fridge awhile back:

Here's a close up:

There are a couple medical explanations for these insane cravings. The first, and most obvious, is that I'm missing the last 7.5 feet of my digestive system. The colon, specifically, is responsible for reabsorbing water and electrolytes. So I can get dehydrated and deficient on salt pretty easily!

Another reason is my adrenal insufficiency. The adrenal glands are responsible for maintaining your fluid and electrolyte balance. I take a pill that's kinda the opposite of a water pill - it makes you retain fluids and salts. But the more salt you eat, the better the pill works. Some patients are actually instructed to eat at least a teaspoon of salt daily!

Several weeks ago, I talked with Wanda, a lady with a permanent ileostomy who has Crohn's. She is missing so much intestine that she has Short Bowel Syndrome. She started describing this "weird salt habit" she has. She has to buy pickles in bulk at Sam's so she can eat the pickles and drink the juice! She takes jars of them to work so that they are always with her when the cravings strike. And she eats lemons with salt. And she craves "sour chips."

Hehe...there's more than one of us out there! ;)

To my UC/J pouch friends, anyone else have this issue? What's your favorite salty fix?

Hannah ;)

Weekend-O-Fun

2011-10-30T22:35:00.001-05:00

This weekend, I had the extreme pleasure of hanging out with some very special people... Nadia and Dennis of the UC Vlog! It was a weekend full of fun, complete with pumpkin carving (click to see their INCREDIBLE IBD awareness building pumpkins!), BBQ eating, and rodeo watching! I got my first taste of delicious Pakistani food, and Nadia and Dennis explored Dallas and celebrated Dennis' birthday! Between all the fun, Nadia and Dennis were hard at work filming video after video for their site! I even got to make a guest appearance in 2 videos.

It was pretty to be with two other people who have walked the same path of disease, tests, treatments, hospital stays and surgeries due to Inflammatory Bowel Disease. All of us share a common desire to use our experiences to help others who are fighting Crohn's, Ulcerative Colitis, and other digestive diseases. And, as you can see from their pumpkins... although missing a lot of guts, their senses of humor are still firmly intact!

Hannah ;)

Scary Costume

2011-10-28T00:10:00.009-05:00

I had an internal struggle this week. It's not really new. See, I have a lot of days where I feel completely wiped out. I get out of bed to go fill my very cool water bottle (seriously, everyone needs one of these! They are AMAZING!) or something, then I'm completely exhausted and shaky and have to go lay down for another hour. I just don't want to do anything. Even the thought of taking a shower is too overwhelming. Then I start beating myself up - telling myself that I just need to try harder to get out of bed and do things and get a job and be productive! Then, I'll have a day where I actually have energy - and on those days I always get out and do a million things. On those days, I have no desire to lay around. So then I think, Oh, I am not just being a lazy bum on those days when I'm laying around. I really do just have bad days where I feel awful and can't do stuff. When I feel good, I feel like doing things. When I don't feel good, I don't.

My joints are continuing to flare. I also have this issue where my eyes get really dry and red when my joints flare up, so I have to wear my glasses - which are from circa 2002 and probably illegal to wear while driving - or I have to POUR eye drops into my eyes! Thankfully, my bad couple of days were followed by a great day yesterday and today. I still have more joint pain and stiffness and swelling than usual, but I actually had ENERGY!

All in all, Wednesday was not a good day for my faith in the intelligence of the human species. I went to a Fall Festival on Wednesday dressed in scrubs, because it was the scariest costume imaginable, based on my experiences that day... keep reading! ;)

Wound care this week was same song, 5th verse. The wound is still the same size. There was no need to cauterize the wound this week, thankfully. We are trying a new combination of ointments and dressings this week - this is the 6th combination we've tried since the middle of September. I asked the doctor if I really have to come in every week since the wound is not really changing. He said I do unless the wound plateaus - if it doesn't change for several weeks. I dunno, maybe I'm missing something... but my wound hasn't changed in 6 weeks... doesn't that sound like a plateau to you?

I was scheduled to see Dr. Saturday after Wound Care, but since he had wanted to see me when the wound was better, I ended up rescheduling since it hasn't changed since I saw him a month ago. Trying to do this, however, turned out to be an extreme challenge, thanks to Misinformation, his Medical Assistant. I called and left a message a day and a half before my appointment to see if Dr. Saturday actually wanted to see me. She did not return my call, so I called again the morning of my appointment. I didn't receive a call back after a few hours, so I called a third time. Understand that each time you call, first you get the automated menu, then, after punching a few keys, you can get a front desk worker, then you can be transferred to the nurse's line, which inevitably is busy. So, on the the third call, I told the lady that I needed to speak to Misinformation directly, as I had called twice before, received no response, and needed an answer before my appointment in half an hour.

Thankfully, she transferred me directly to Misinformation, who asked if I had got her message. No, she hadn't called me. "Oh. Isn't your number this?" No. It's not. She has my correct number because it's in my chart, and she's called me before, AND I left my number in my message both times that I called.

"Oh. Well, that would explain why you didn't get my message."

(Can you imagine poor John Smith or whoever she called checking their voicemail? "Hi, this is Dr. Saturday's office, calling to check up on your anal wound." Hahahaha!)

Misinformation continued, "Did you need something?" Yes, as I explained in both messages I left, I just need to know if I should keep my appointment or reschedule, because there has been no change in the size of my wound.

"Oh, sounds like we need make you an appointment to come in! Let's make an appointment." No, I already HAVE an appointment. Can you please just ask Dr. Saturday if he wants to see me or not, because there has been no change?

"Ok, let me put you on hold for a moment while I ask him."

Then she transferred me to her voicemail.

I waited a few minutes, called again, got through the automated menu to the front desk, and told them the situation for the fourth time. She transferred me to Misinformation.

"Hi Hannah," she said, "we lost you."

Hi, Misinformation. You transferred me to your voicemail.

"Oh. Well, he says he wants to see you in a month. So let me reschedule you. How's three weeks from now?" Well, if he wants to see me in a month, that would be about 4 weeks.

"Oh, well, he said a couple weeks. So like the beginning of November? Is that okay with you?" Um, when did Dr. Saturday say to come? A month, three weeks, or a week?

"Um, you know, a few weeks. I have you down for Nov. 16. Is that okay?" Yeah, it's fine. She hangs up.

Then, when checking out of Wound Care, the nurse had to ask me how to spell "assessment," because she couldn't figure it out and needed to pull up an assessment appointment for me.

See why I thought scrubs were a scary costume? ;)

Hannah ;)

God's Goodness

2011-10-20T15:00:00.003-05:00

Okay, so I haven't updated in a while... a lot has happened. I had a wound care last Friday, and the wound got a little bit bigger. Again. I was running a fever and feeling awful. The wound cultures came back negative. Despite that, the doctor suggested that I try a course of antibiotics to see if it made me feel better. At the end of the visit, a nurse suggested that I get a fresh set of eyes to look at the wound. We have not made any progress in a month.

I went to the regular doctor on Monday, and she ordered some labs and an MRI because my tummy had been hurting again right where the abscesses had been, and I was running a fever. She agreed with me to hold off on taking the antibiotics. If there wasn't any infection, they wouldn't do much except upset my stomach!

On Tuesday, I went to see the other wound care doctor. A nurse I hadn't seen before came in, and I had to remind her to wash her hands before touching my wound. She graciously complied... but I really don't think I should have had to ask!! Come on, people! The doctor thinks that the wound has too much granulation tissue, which makes it hard for the skin to cover the wound. So he burned off the excess tissue with silver nitrate. Without numbing me first. ;( Ugh. He thinks that it will need to be cauterized every week for several weeks before we see progress. Rest assured that I will ask him to numb me next time! ;) He had several ideas he wants to try before sending me back to GI to consider a UC treatment like Remicade or Humira. I also really need to be better about following my high-protein diet... I have kind of fallen off the bandwagon (and some pounds are falling off me, too, as a result). This will help my wound to heal. I also have to stand up and walk around for 30 sec after each 30 min of sitting.

Next, I went to go get my MRI (after almost passing out when I heard what it's going to cost me! My old insurance was so amazing that my new insurance seems incredibly crummy in comparison). On the way to the MRI, I got some excellent news! Many of you know that I was originally in nursing school when I got sick. During some time off school, God led me out of nursing. I have been pursuing pre-reqs for med school/Physician Assistant school since then. After months of studying for the MCAT, God tightly closed several doors at once that made medical school out of the question (although I still took the MCAT and could use my scores for up to 5 years). So, this summer, in between surgery and wound care, I finished up the remaining PA pre-reqs and applied to several PA programs. This past weekend, I was invited to interview at two schools, and, while I was driving to my MRI, received a call from one of the program directors. They offered me a spot in their program, to begin in May! AAAAAH!! When I could breathe again, I thanked the director for his call and expressed my excitement! ;) I never expected to hear back so quickly!

The doctor called me today, and thankfully, the MRI did not show ANY infection at all!! Praise God! It did show a very large ovarian cyst exactly where I was hurting, so that definitely explains the pain. I've had these cysts before, and they come and go, and I'd really rather just leave them alone! The doctor believes that my fevers (which I've been getting daily) are from my arthritis inflammation, not infection. Not too much we can do about that...

I've been off and on feeling completely awful and totally fine. It's very strange, but I'll take it! Last night, my joints completely froze up and I couldn't move! My mom had to bring my contact lens stuff downstairs to me so I could take them out without having to move. I wasn't able to sleep well from the pain, and today's been rough so far, too... hopefully it's just the weather.

The other good thing about the MRI being clear is that we can move forward with more aggressive treatment for the arthritis, if needed (I go back and forth on this, because I have times when my joints are okay, then I have times like today where I'm totally miserable and can hardly support my weight. And constant fevers are just no fun at all).

Mainly, though, I'm rejoicing in God's goodness for a clear MRI, a "next step" in my life, and for my heating pad and fleece blanket that never fail to make me feel a little bit better!

Hannah ;)

An Open Letter to Squirt

2011-10-14T10:14:00.001-05:00

Dear Squirt,

I never thought I'd be writing this letter to you. And I never thought I'd say any of the things that I'm about to say. But in honor of your second birthday (TODAY!), here goes:

At the risk of sounding dramatic, you have given me my life back. My life used to revolve around going to the bathroom. There was the constant stomach pain from the moment I woke up until I went to sleep curled in a ball around my heating pad. It never really went away, just got worse.

There were the months when I'd have to get up hours before I had to be anywhere so that I could spend most of that time in the bathroom, having bloody bowel movement after bloody bowel movement, over and over again. There were the nights spent on the bathroom floor so I'd be close enough. There were semesters of sitting near the door of the classroom and special permission from professors so I could run to the bathroom whenever I needed to. There were the accidents. There were days when I couldn't leave the house at all because I was, as one of my doctors so gracefully put it, "a potty cover." ;)

There were the constant IVs to rehydrate me since my colon didn't absorb any water. There were the anti-spasm pills that made my vision blurry and my mouth cotton dry. The liquid diets. The gluten-free diets. The low-fiber diets. The supplements and herbs and pills and treatments and medicated enemas and medications and infusions. It didn't really matter; I still hurt and was sick more often than not.

Squirt, there's no way I could have held down a job back when I had a colon. Few jobs can accommodate sudden needs to go to the bathroom every several minutes. You have given me freedom and independence in a weird sort of way. I can choose when I go to the bathroom. And there's no pain, no urgency. I go in, empty my bag, and I'm done.

Are you an inconvenience? Maybe. But honestly, Squirt, you're not nearly as inconvenient as having an ulcerated, nerve-damaged colon that never worked properly. Are you gross? Maybe, but not as gross as ulcerative colitis. Do I still have a long list of health problems that make me slightly miserable? Yes, but I have one problem fewer...

When my doctor first told me that he was going to make you, I thought, "Thank goodness this is only temporary. There's no way I would live with an ostomy forever." God has made me eat those words -- and I say that without any bitterness, just with a smile, for I am truly thankful for you, my permanent sidekick, Squirt.

Many happy returns.

Hannah ;)

Prayers for Laura

2011-10-11T21:48:00.005-05:00

Laura, from It's So Long Colon wished Winnie the Pooh, her ileostomy, a lovely goodbye on Sunday as she headed in for surgery to create her J pouch. I'm praying for a speedy recovery and a quick adjustment to life with a J pouch! Go visit her blog and wish her well!

I'm doing okay! Feeling kind of "off." Nothing really is wrong; just bad days here and there. A bad day with the steroids last week, arthritis flaring with the weather, migraines, tummy hurting and feeling nauseated. I am a little concerned that something is not right with my tummy. I don't really know what the deal is. It just doesn't seem like I should have to force myself to eat and still have pain. Hopefully it's just that my body is still trying to clean up the inflammation from my June surgery!

Hannah ;)

Happy Birthday, Semi Colon!

2011-10-07T23:11:00.005-05:00

Two years ago today, I published the very first post on Semi Colon from a hospital room decorated with mismatched 1980's blue and green floral curtains. I was about to undergo my first surgery, a colectomy & J pouch creation (laparoscopic total proctocolectomy with ileoanal anastomosis and diverting loop ileostomy) and didn't want to have to answer a million phone calls, emails, and texts asking for updates. ;)

Semi Colon has become a place where I narrate my health adventures with (usually) good humor and reflect on how these adventures affect me spiritually, or more importantly, what they show me about God. Blogging has been a great way for me to put my thoughts in order and re-focus on Jesus.

I am so thankful for you, my readers, who have been nothing but kind, caring, funny, respectful, supportive, and many other wonderful adjectives. You have encouraged me when I've been discouraged. I hope that, in some small way, following my journey has drawn you closer to God and encouraged you to faithfully live out your life, to walk each day, in a way that honors God. Because that is way more important than being "healthy."

Why is this so important? How can I (and you!) have hope and peace with God when I'm stuck in a body doesn't work right or in situations that are incredibly tough?

One day, each one of us will leave our bodies behind (I will just have 7.5 feet less of guts to leave behind than most of you). One day, you will die. Tough topic for a birthday blog, but true. And you will face God, the God who made you. The God whose standards you can never perfectly keep. The God who gave you a conscience you can't even live up to. And when you face Him, it won't matter what your health was like, what kind of diet you ate, what kind of good things you did or didn't do. Someone has to pay for those things you did wrong. And our attempts to make things right with God just fall so short (Romans 3:23, Isaiah 64:6). We deserve punishment because of that.

But God - (beautiful words!) demonstrates His own love toward us, in that while we were still sinners, Christ died for us (Romans 5:8, part of the Romans 5:1-11 challenge!). He took the punishment our sins deserve (II Cor 5:21). If we come to God in repentance and faith, we are justified - made righteous in God's eyes - because of Jesus' death in our place. This gives us peace with God, and a hope for the future, a hope that does not disappoint us (Romans 5:1-5).

Dear readers, as a follower of Christ, I beg you on His behalf, be reconciled to God (II Cor 5:20)! Please do not wait. If you don't have this hope, if you know that you lack a peace with God, ask for His forgiveness. Turn to Him in faith and He will be your Lord, your King. If you have a question, send me a comment or message (I preview them, so if you prefer yours to NOT be published, just let me know).

Please, right now, spend 5 minutes thinking about this... and if you already are following Christ, spend 5 minutes reminding yourself WHY. What is important in life, and what is not? Knowing Jesus is the most important thing (Philippians 3:7-14).

In the next year, look for some changes coming to Semi Colon. Blogging has opened up the doors for me to meet other people who have UC and people going through surgeries. This has been such a blessing. I'm working on organizing and more clearly presenting "my story," but mainly, I will start publishing posts on tips and tricks for hospital stays, surgeries, procedures, and living with an ileostomy. I hope to make Semi Colon a resource for people who are on the ever-exciting journey of living life with IBD.

The tag line for Semi Colon is "my journey to a life without ulcerative colitis." As I learned today, that journey still continues...

Happy Birthday, Semi Colon.

Hannah ;)

(see post below for today's update)

It's Baaaack!

2011-10-07T12:08:00.002-05:00

Today I had more wound care... sorry, I feel like I sound like a broken record these days! ;) Unfortunately, the hospital LOST the cultures we did last week. You will recall that these take several days to grow, so this is, um, disappointing. Also unfortunately, the wound is not any smaller. It really is the same size as it was in mid-September when I got rid of Edgar. Thankfully, it's not oozing pus anymore and is a little less painful than a few weeks ago.

And ALSO unfortunately... the doctor thinks that the wound not healing is a manifestation of Ulcerative Colitis. Again. I have no colon, no rectum, no J pouch, no abscesses, and no anus, but somehow, my UC has found yet another way to rear its ugly head. Haha! At this point, it's just humorous (and slightly impressive) how it manages to come back! It's pretty stubborn, but thankfully... I'm even more stubborn.

The doctor said that IBD (Inflammatory Bowel Disease, a group of diseases encompassing Crohn's and UC) is not just a disease of the digestive system - it is a disease of the immune system, so the inflammation can come back in numerous places, even after the inflamed intestines are long-gone. We already know that I do have systemic issues - my arthritis, for example.

We repeated the wound cultures because he wants to completely rule out infection. In the meantime, I'm supposed to try to limit my sitting. Hmm... I'll letcha know how that goes! ;) The worst case scenario for this, the UC coming back in/on my wound, is that I would have to actually go back on Remicade/Humira - both heavy-duty treatments I'd prefer to not revisit.

Hannah ;)

Wound FAQ and Rise & Conquer!

2011-10-02T16:49:00.000-05:00

So, Friday's wound care was a "same song, 2nd verse" deal. My wound is not getting smaller. It is looking a little healthier than it did on Monday, which is good. The doctor did some wound cultures to see if the wound is infected, and if so, which antibiotic would be effective.

The dark side of all of this is... 1. the wound may have a drug-resistant infection, since I've been on so many antibiotics, and 2. the wound may not be infected at all- it may be my UC coming back on my skin. Just like the ulcers from my UC moved to my J pouch, they could also set up shop in the anal area. So, sad as it sounds, we're actually HOPING it's "just" an infection! Thinking that it's UC back again is just a little too scary to dwell on!

As far as the wound goes, I'd like to address two FAQs:

Q1. The WoundVAC was working; why can't you use it again to close up the wound?

A: The WoundVAC is very effective for helping a deep wound fill in. Imagine my wound as a hole in the ground. Edgar the WoundVAC helped fill the hole in. He did his job well, and his work is done. The hole is now filled; we are just waiting for the "grass" (skin) to grow over the "dirt" (granulation tissue).

Q2: Why can't they just stitch up the wound?

A: Imagine if you took a potato peeler to your arm (emphasis on "imagine:" don't try this at home, kiddos!). You couldn't stitch that wound together, could you? My wound is similar.

Finally, I'd like to do a big shout-out to Rise and Conquer! The 3rd Annual Morse Cup Tournament, a golf tourney, was held on Saturday. This year's honorees were two kids, Philip and Sophie, who live with Crohn's/UC. These kids and their families have been through quite a bit as a result of these "crappy" diseases. I don't know the final count-up, but a LOT of money was raised that will help these families and support those fighting Crohn's Disease and Ulcerative Colitis! The most amazing thing to me was the number of volunteers who were there. It meant a lot to me, as someone who's gone through this disease, to see people wanting to lend a hand to help out others who are suffering! It really touched me, and I'm about as sentimental as your average teenage boy. Hopefully we will find a CURE for Sophie and Philip! And while we're waiting, we can give their families support so they can continue seeking the best treatment possible for their amazing kids.

Hannah ;)

Chocolate Bunnies

2011-09-27T22:13:00.001-05:00

I've mentioned this, one of my favorite shirts, in a previous post... I didn't wear it today (I was tutoring a high school student, and I want to continue the illusion, I mean, the impression that I'm a good kid in front of her mom, at least), but boy, this shirt says it all today.

On Monday, I went to Wound Care after a delightful 10 days off (and only three showers, boo - I was only allowed to shower every 3 days due to the special collagen dressings). I told my nurse that I doubted that the wound had gotten any smaller. Sadly, I ended up being right - the wound, in fact, has gotten LARGER. It was a pretty big disappointment that it has gotten bigger and had the nurse quite concerned. It is also REALLY hurting me. I think it's infected, but it was difficult for the nurse to tell, since I took a shower and cleaned it just prior to wound care. We decided to go back to my SeaSorb alginate dressing - no more collagen implants in my bootie. ;) And I can shower daily now.

Next, I went to see Dr. Saturday. The last time I went to see him (a month ago), he was quite surprised that I was still on the WoundVAC. So we set an appointment for the following month, believing that SURELY by that time, I'd have my perfect "Barbie butt." Last week, I realized that I wouldn't be healed. I called his office to see if he really wanted to see me, even though I'm not healed, but of course "Misinformation" did not actually talk to the doctor or call me back.

When Dr. Saturday opened the door, he stopped in the doorway. "I'm scared to come in," he joked, "I'm scared you're going to get another problem!" He decided to cauterize the wound with silver nitrate. This was an interesting experience. It is supposed to promote wound healing, I guess? He told me it would smart pretty bad. Once he was done, he asked if it hurt. I shook my head no. He chuckled and said, "I've hurt you way worse than this!" Hey, he said it, not me. ;)

He did not have a lot of helpful information or advice for my continuing issues with dumping, nausea, occasional vomiting, and belly pain. "Sounds like spastic colon," he said. I had to remind him that, in fact, I have no colon. "People like you, people who have had cancer do this, too. They have a symptom and are convinced something's wrong." Um, really? Frustrating. He talked to me about the medication I use to slow down my GI tract (Lomotil). I was surprised to hear that it causes side effects of dry mouth, double vision, and sleepiness or feeling loopy. I have not experienced any of these side effects at all, so he told me I must not be absorbing the medication. No wonder it's not working when I'm dumping badly... ;) I can increase my dosage above the directions on the bottle until I feel side effects.

My grandma has been having her own hospital adventures due to GI issues. Thankfully, after a "fun-filled" weekend of tests and procedures, she came home again late this afternoon. Please pray for her healing and for relief from her discomfort.

Thankfully, I saw that Nadia was able to go home today! Yay!! Please keep her in your prayers as she continues to heal and recover! She has been through so much. In addition to just being awesome, she is such a fantastic advocate and educator about IBD and J pouches and living with an ileostomy. I don't think I mentioned this, but I had actually seen some of her videos online before I met her - then I met her in "real life." How cool is that?

I am trying so hard to get better, so it's been a little frustrating to feel like I'm going backwards with the "chocolate bunny" feeling. It is so uncomfortable, no matter if I'm standing, sitting, or lying down. But, as the other bunny reminds me, it could be worse... I could be missing a chunk of my head instead of a chunk of my rear! ;)

Hannah ;)

Pray for Nadia & Kendra!

2011-09-22T23:26:00.004-05:00

Hi, everybody!

I am still really enjoying NOT being hooked up to tubes and NOT carrying around Edgar. I still reach for him every time I stand up or get out of bed. Then a little thrill goes through me, because he's NOT there anymore!

The wound is doing okay. It actually is feeling very sore and raw. I think that the WoundVAC helped to protect it and hold the edges together. Now when I sit, I feel a little bit like I'm splitting in half! As I now am responsible for performing my own dressing changes (an acrobatic feat in and of itself!), I get to look at the wound. It's big. It's ugly. It amazes me that it's only a third of the length and 1/16th of the depth that it was 3 months ago. It was HUGE at the beginning. This healing process has shown me in a new way that God has designed our bodies amazingly.

I saw Endo Doc early this week. It actually made me a bit depressed. She really thinks that I will be steroid-dependent forever, which of course, I did not want to hear! This means I will continue with my two different steroids, one once a day, and the other three times a day, for life. But thankfully, I am stable on my current dosage, and we have a pretty good system in place for managing my steroids on those days when my tummy is not working right. We will give the taper one more try once my wound has healed completely.

I am also working on healing emotionally right now... as I hit the one year mark of having my J pouch removed and all the complications that followed, I've realized that I've been through a lot! I've been sort of preoccupied with intrusive memories that I'd rather not have replaying in my mind! Anyways, God has provided numerous informal opportunities for me to reach out to other patients going through surgeries for IBD. This summer, however, I began to actively seeking out opportunities. After all I've gone through, I really want to reach out to others facing these challenges! This has been in the works for a long time now, but I will be revamping Semi Colon very soon to better explain my "story," and to provide more helpful information for others who are going through similar surgeries/dealing with UC/Crohn's.

So - to share just a couple of this week's very interesting and wonderful opportunities! First, I spoke to an ostomy support group about life with Squirt. They probably were more wonderful to me than I was helpful to them! It was great. Each person there has been through a lot, and has a unique and incredible story of how they got their ostomy. I met an ostomy nurse there, and I asked if she was able to give my name and contact info to patients. She is, so I gave her my info... and the next morning, I awoke to an email from the nurse regarding a couple patients. Turns out that there's a patient in the hospital who has a story that's incredibly similar to mine...

I went to visit Nadia yesterday. She vlogs and blogs quite extensively about her experiences - check out her popular site here. Meeting Nadia was awesome! Nadia is basically my clone! We felt like we were telling each other our own story - right down to pancreatitis as a rare side effect from a medication we took, to pouchitis resulting in permanent ileostomy... the similarities were crazy! She is going through quite a bit right now - she just transferred her care here from out of state, and is in the hospital for an abscess - another aspect of our lives that we share! She is new here, in this hospital for the first time (and pretty tired of having to relate her complicated health history to every new doctor or nurse!), emotionally adjusting to having a permanent ileostomy - yet, through it all, she has a tight grip on her sense of humor and her strong spirit shines through! Please pray for her recovery, for less pain and nausea, and for comfort! It was so very clear that God had wanted us to meet that it was giving me goosebumps!

Finally, my dear friend Kendra (fighting Follicular Lymphoma) had scans today - she is halfway done with chemo. Her scans showed some cancer, but the doctors are pleased with how things look and believe that she will be in remission after she completes her 6 rounds of chemo. Unfortunately, she was not able to receive her chemo today because her blood counts were too low. Please pray for her body to crank out more healthy cells (but for the cancer cells to DIE and never come back!). Please pray for her and her husband, Stephen. They are both under quite a bit of stress right now, understandably!

Hannah ;)

No Strings Attached

2011-09-18T17:40:00.000-05:00

Sorry for no post for a while... just haven't been feeling the blogging, I guess! I am doing okay. No crisis or anything horrible for a whole week! Muscle pain is still acting up and joints are unhappy with the weather. I've been dumping off and on, sometimes quite badly, for a while, but I think that's under control now. I'm having a bit of concerning stomach pain and nausea - concerning because it reminds me of how I felt prior to my surgeries this spring and summer - but hopefully it's just a bump in the road. Otherwise pretty status quo. The wisdom teeth recovery (aka, excuse to eat processed cheese food with a spoon) was completely uneventful and hardly even worthy of mention, thankfully!

Now for some news... I lost three pounds on Friday. Don't worry. These were three pounds I needed to lose - Edgar the WoundVAC!!!!! I'm not hooked up to anything - no tubes, no machines - just Hannah and Squirt, no strings attached.

That's right, after 80 days and 29 painful, humiliating dressing changes... I am DONE with Edgar! Praise God! The wound measured 0.5 cm less in length than last week, and the depth is 0.6 cm less! The doctor said he just didn't see any reason to continue with the WoundVAC... and he didn't have to say that twice! He is thrilled, the nurses are thrilled - everyone's happy! I am well on my way to having a Barbie Butt!

Unfortunately, being done with Edgar does NOT mean I'm done with Wound Care. I still have to have special dressings and continue to have the wound assessed. We are using a foam - type substance that is made of collagen. That's right; I'm getting collagen implants in my butt. Be jealous. ;) Anyways, next they put this alginate-type dressing on top of the collagen, then tape it all in. The crummy thing is that I'm not allowed to remove it or get it wet for 3 days - I am not allowed to shower. I told them I would try this, but I would reallllllly prefer something that I can change daily! It was already a mess 24 hours later. Due to my wound's location, this type of dressing is NOT practical. I don't (and I don't intend to) blog about all the difficulties I encounter many times a day for the last 80 days because of the location of the wound. I'll leave it at that. This cannot heal fast enough! ;)

I am a little worried that this final healing stage will take forever. For one thing, have you ever cut the webbing between your thumb and hand? You know, every time you move, it rips open again? That's kinda what I think will happen with this wound. Secondly, the doctor said that, because of my UC, it may have a lot of difficulty closing all the way up. Remember when they sewed my bottom up last year? The stitches, which were supposed to dissolve in a matter of days, took months to dissolve. But the skin never healed shut down there at all. So I am at pretty good risk of not completely healing up down there.

When I had Edgar (aaaaah, how wonderful to refer to that time in past tense!), he was always hanging from my shoulder, so everyone used to ask me, "Do you want to put your purse down?" I would always reply, "Oh, it's fine," but really, I was thinking, "You have NO idea how much I want to put it down!" Thankful to be free, no strings attached!

Hannah ;)

Wounds on Both Ends

2011-09-09T23:04:00.004-05:00

Thanks for the prayers - the wisdom teeth thing went down with no issues! One tooth was a little troublesome to extract, but the whole procedure for both teeth took under an hour. I am feeling fine and experiencing pretty much no pain from my mouth, thankfully.

I am having a LOT of muscle pain, though. It has been off and on really, really bad for the last few days. Overall, though, I feel very energetic and stuff from the extra steroids I've been taking! I'm enjoying that it while it lasts. I expect I'll probably crash in a few days when my body realizes I'm back to a normal dose of roids.

So, today I went back to wound care, hoping that the doctor would tell me I'm done with Edgar! The nurse takes a look first and measures the wound, then the doctor comes in and examines the wound for himself. It's getting tough to get accurate measurements, especially on the depth, as it is healing unevenly. So while the wound looked smaller to Christina, the measurements were only a bit smaller, likely because it was measured in a slightly different spot last week. The wound care doctor came in... and... he said it looked good, but he would recommend going back to Edgar for "a while." I was so disappointed, and I asked if I had to. He said that I could make the call to stop the WoundVAC if I wanted, and the wound will heal with or without Edgar. It will just heal much faster with Edgar. So... I'm back on the VAC.

I'm pretty disappointed. But I pray that God will give me patience to continue to endure. Please pray for healing for, uh, both ends of my GI tract - the entrance (my mouth), and the (former) exit site! ;) The nurses at the wound clinic thought I was nuts for doing the teeth out while I was completely awake. "I'd be begging them to put me out!" I thought this was incredibly ironic, as I was the one begging them to stop while they extracted foam and tissue from my wound. I told them, no offense, but wound care is far more traumatic than having wisdom teeth out! At least they numbed me for the wisdom teeth!

Hannah ;)

Surgery and Good News!

2011-09-07T23:35:00.001-05:00

Friends - I am having another surgery tomorrow.

Don't freak out; it's no big deal. ;) I am having my wisdom teeth out. Of course, they started to try to come in, and it's not working - they are impacted. I opted to have them extracted with no sedation. I'm just getting two teeth out, the sedation is expensive, and, let's face it, the meds don't even work on me anymore - I've been sedated close to 20 times. You may recall my experience with the last "sedated" scope I had - I was completely awake and aware and gagged and heaved throughout the entire thing. I figure that I have worse things than wisdom teeth extraction done to me while I'm completely awake (read: dressing changes), so I'll be fine. I'll letcha know tomorrow if this was a bad choice. ;)

Today was an exciting day - back to the clinic after an entire WEEK of freedom from wound care. My absolutely amazing, fantastic wound care nurse, Christina, told me last time that if the wound looked good today, I might be able to stop the WoundVAC therapy. So, I went in, we did a drumroll, I dropped my drawers, aaaaand... I walked out WITHOUT Edgar (but after pulling my drawers back up)! Christina said the wound looks great, I did a good job taking care of it (which is slightly amazing since I cannot actually SEE the wound or what I'm doing!), and I can continue until Friday without Edgar. Here's Christina and I - note that I am wearing a victory smile, and NOT wearing Edgar:

(In the background above our heads is the cool hyperbaric chamber!)

I can't give up Edgar for good yet - this is all unofficial. I have to get the official word from my wound care doctor on Friday. He'll give the final verdict and decide what kind of dressing to use from here on out. Likely I will only have to go into the clinic for 4-6 more weeks (until the wound closes up), but only ONCE a week. I am currently using a dressing known as SeaSorb - it is an alginate dressing that absorbs a lot of wound goo and speeds wound healing by promoting collagen formation. Oh, and it does NOT stick to the wound. So it doesn't make me unhappy when it comes time to change this dressing. Oh, AND, no tape is involved!

I am so thankful to God for allowing me to continue to make progress toward healing this wound! I have been doing a lot of thinking about everything I've been through, and it does a couple things for me: 1. makes me so thankful to God for bringing me through some incredibly difficult times, and 2. really puts things in perspective for me - it's hard to get upset about everyday annoyances when you've faced huge battles.

Please pray for an easy time with the wisdom teeth! I got to take double steroids today in preparation for the stress of wisdom teeth removal, so I feel FANTASTIC - normal energy, no shakiness or insane salt cravings - wish I could feel like this every day! Course, here it is, almost 1 am, and I'm still awake and blogging! So much energy! Love it! ;) Seriously, though, the doctor told me I will have a tough time afterwards - my body may not react well to even a simple wisdom teeth surgery - also, I already take pain medicine, so he tells me I will probably have a lot of pain afterwards.

I talked to Patt early this week. She sounds fantastic - a complete night and day difference to how she's sounded for the past few months. She was full of wit and wisdom - I just wish I could have tape recorded our conversation to catch all her wise words. She is recovering very well, just having to come to the realization that her problems aren't really "fixable," which is a difficult place to be. Please continue to pray for her healing.

Hannah ;)

Operation

2011-09-04T15:14:00.001-05:00

Patt came through her surgery. Unfortunately, Dr. Saturday deemed it too risky to perform the more extensive surgery that she likely needs, so she had a small surgery that may or may not help her very much. Please continue to keep her in your prayers. She is going through an unbelievably difficult time, and really needs some encouragement.

I had my two month follow up with Dr. Saturday. My amazing mom found me the perfect shirt to wear to this appointment:

It's the Operation guy saying, "You removed my WHAT?" Where does she find these shirts? ;) I actually had a nurse stop me and ask me what they removed. I tried to play it off, but she persisted. Um... yeah. They removed my anus.
Also, here you can see me and Edgar (aka my ball and chain). The clear tubing goes to my surgery site. He is pretty small and unobtrusive. When I'm around the house, everyone keeps asking me where I'm going - I look ready to go all the time, since I'm wearing a little "purse."

I asked Dr. Saturday what the deal was - he didn't exactly tell me that I'd still be carrying around a WoundVAC 2 months after surgery. He said that it usually doesn't take this long. I'm just special. ;) He was sad that I'd had to go back up on steroids a bit, but said that probably confirms that I am steroid dependent and will have to stay on the roids forever. I'm still holding out the hope that I will be able to taper again once my wound has healed. We'll see. He also mentioned how impressed he was that I lost massive amounts of weight this spring while on a fairly decent dose of steroids. Most people gain a lot of weight while on roids. Again, I am truly special. I have, however, gained 15 hard-earned pounds since my third surgery in April! He told me to watch out, or I'll get fat, but he couldn't even say that with a straight face. I'm getting close to my "healthy weight." As a girl, of course, it is really weird to have people commenting on your weight and weight gain, but I definitely needed these pounds!

On Wednesday, I went to the wound clinic. My skin is pretty bad again, so I wore Edgar til Saturday night, and now I'm on VACation again. It's lovely to not be hooked up to anything! And I'm hoping my skin will heal up. I don't have to go back to the clinic til Wednesday - I get a whole week off from wound care! Feels like Christmas! ;) The most exciting news is this: the nurse thinks I might be done with Edgar on Wednesday! She'll get a doctor to evaluate, and if he agrees, then I will kiss Edgar goodbye! The wound is now very shallow. It is still pretty long, and will take an additional several weeks of wound care before it closes, but we are definitely moving in the right direction!

This week has been really tough. I've been in bed for most of it - I am dumping very badly despite taking medicine that is supposed to slow my stomach down. I'm actually maxing out on that medicine without much effect. I feel very low on steroids - super exhausted, shaky, craving salt. My pain has been worse, too. I think I am not really absorbing my medicines because everything is going straight through me. I'm allowed to double up on steroids when this happens, but I have to do this very judiciously. If I go up and actually absorb it all, my body has a hard time when I go back to my normal dose. But if I get too low on steroids by not absorbing them, I get very sick. It's a very tricky balance.

Please keep Patt in your prayers! Thank you for your prayers for my friend Kendra. She is halfway done with her chemo! Thankfully, they have finally hit on the right "cocktail" of meds to keep her from feeling like she wants to die in the days following chemo. She is still dealing with chemo side effects of fatigue and nerve pain issues, so keep her in your prayers.

Hannah ;)

Prayers for Patt

2011-08-29T20:28:00.004-05:00

Hi Semi Colon Readers!

Tonight I have a prayer request for you.

I have mentioned my friend Patt several times. Patt and I met in April, when I was in the hospital getting beefed up on TPN for my third surgery. She lives in Colorado and comes all the way to Texas for surgeries and treatment. Patt has lived with Crohn's disease for over 40 years. We share many things: scars, surgery stories, TPN, and ostomy bags. She had a rough go of it many years ago with (would you believe?) recurrent abscesses that didn't go away until she had a more radical surgery to remove her rectum and anus... just like me. This granted her 20 YEARS of remission.

Sadly, she has had an extremely difficult time over the last several months. She was recovering from a surgery when we met. I got to go home after two weeks, but she remained inpatient for an unbelievable additional two MONTHS. She endured another surgery, and finally went home... not because she was any better, but because her mental health simply couldn't take another day in the hospital.

Since arriving home, she has continued to endure great pain and is barely able to eat. She needs another surgery. After trying to push through for months, today she was admitted to the hospital, and Dr. Saturday will operate on her tomorrow.

Patt has been so sweet and kind to be more or less my "guardian angel" on earth as I've gone through my surgeries and hospital stays this spring. The day I was supposed to go home in April, but took a turn for the worse, she was the one who alerted the charge nurse to my downswing. Despite feeling terrible herself, she came in to check on me several times.

A month or two ago, I got a huge package in the mail. It was a beautiful quilt from her church, Patt explained, a prayer quilt.

The quilt is tied instead of being quilted. Each person prayed for me, then tied a knot, so each knot represents a prayer. It's such a treasure, and the meaning behind the knots makes it that much more special.

The back is a cross, to remind me that Jesus is always with me.

Please pray for this very dear woman! She has endured so much, and she is facing yet another surgery. Pray for God's grace and peace to be with her. Pray for skill for Dr. Saturday. And for health to be restored to her body.

Hannah ;)

Answered Prayer

2011-08-27T22:27:00.002-05:00

I just wrote a beautiful post, but Blogger ate it...

So here's the short and dirty version. ;)

I went back up on steroids, and I am feeling MUCH BETTER, praise God! Pain is better, I can actually get out of bed and walk to the bathroom without feeling exhausted! Thanks for your prayers; I could definitely feel them!

I felt HUNGRY today, which hasn't happened in many months, and is very exciting!

My wound measured 5 mm less deep on Friday! My skin is a disaster again and needs a VACaction, but we are holding out as long as possible, since Edgar is doing such a good job.

Please keep my very dear friend Kendra in your prayers. She finished her 3rd round of chemo on Friday, and the couple of days after chemo are pretty tough on her.

I have a lot to thank God for, but as I mentioned in my previous post, God is worthy of my thanks and praise primarily for who He is, NOT just for what He does or when He does what I want.

Hannah ;)

Pain Flare

2011-08-25T12:14:00.003-05:00

I've written a lot about insurance and stuff lately, which is probably about as much fun to read as it is for me to experience. Sorry! ;) I didn't mention that last Friday, the measurements on the wound were (drumroll, please)... smaller! Even though I spent a few days off Edgar, the wound still got 7 mm smaller, which is simply amazing. The doctor kept repeating how great everything looks and how well it's healing. The nurses can't stop saying how much smaller it is. YAY! I can't wait to see how small it will be tomorrow.

Unfortunately, I'm having a rough time in general. Thankfully, my stomach is doing okay. I have random tummy pains, but it's way better than it was. My muscles and joints, however, have been hurting SO bad for the last week. It's been a while since my pain was this bad. I'm also feeling shaky and very, very tired. I dropped down on my steroids a teeny, tiny bit about 3 weeks ago, so I am not sure if that is the problem. A few days this week, I went back up, but I don't think it made a huge difference.

I am very quickly becoming frustrated that the last week has seen me in bed a whole lot more than out of bed. Feels like I'm taking steps backwards. I know that my body is still having to work extra hard to heal up the wound, and that it's recovering from having 4 big surgeries in the last 20 months. But I was feeling better two weeks after surgery than I feel now. And then there's the whole post-surgery letdown - I'm supposed to be BETTER. I always believe that somehow, surgery will fix my autoimmune inflammatory issues. The pathology on the stuff that they took out in this last surgery showed that my body was actively attacking it - it was very ulcerated and inflamed and stuff. So I was hoping my body would settle down with that angry tissue out. Instead, I think it's decided to try to find new targets! ;)

I saw Dr. Pain and he gave me the green light to up my pain meds if needed. I'm supposed to rest in bed a lot and drink a lot. I know that I'm impatient. I just want my body to WORK so that I can get out and enjoy life and start working again. But that's not what He has for me (at least not this week).

Last night as I was having these thoughts, I began to read Spurgeon's comments on Psalm 115:18. He wrote, "Go on praising Him if He shall take you up to the bed of sickness -- if every limb shall be a mass of pain, if every nerve shall be a highway for a crowd of pains to travel on -- yet still go on blessing and praising and magnifying Him, for this is His due!" Wow. I'm constantly amazed at God's ability to tell me EXACTLY what I need to be reminded of at EXACTLY the right moment. It doesn't matter how I feel. It doesn't change who God is and what He has done for me. He remains worthy of my worship!

Hannah ;)

One Year.

2011-08-23T22:07:00.002-05:00

One year ago today, I went into the hospital for my second surgery.

I had had the first part of the J pouch procedure in October 2009. This is where they remove your colon and create a J pouch out of the end of your small intestine. The J pouch is stapled into your pelvis and was supposed to act as a small holding area for stool. While the J pouch heals, your stool is diverted with an ileostomy. Unfortunately, I developed pouchitis in my J pouch right away. Essentially, my ulcerative colitis moved from my colon to the J pouch. By last summer, my immune system was going nuts. I could barely walk from arthritis and muscle weakness. My whole body hurt constantly. I was having bowel obstructions almost daily. My stomach either didn't empty properly or emptied almost immediately, wreaking havoc on my ability to absorb fluids and medication. I was exhausted, constantly nauseated and in pain, and passing blood from my J pouch 8 times a day. My doctors, family and I reached the difficult decision that the J pouch needed to come out.

I don't even know how to describe this surgery or the difficulty of the days which followed. After a 5.5 hour surgery, I spent an additional 5 hours in the PACU, where they tried in vain to stabilize my vital signs and pain as I screamed and cried.

I was taken up to the floor, but my vital signs continued to deteriorate. A Rapid Response Team was called into my room. I vaguely recall the room being filled with people (and I was not sure why they were all staring at me!). The tech eventually had to turn off the monitors, because everything I was hooked up to was beeping and alarms were sounding since my vital signs were so bad.

I was transferred to the ICU. My hemoglobin was half of what it was prior to surgery - I had lost half of my blood. During my time in the ICU, I had periods of lucidity, but became very confused and was hallucinating. I was in the worst pain of my life. I was experiencing what we later found out was Systemic Inflammatory Response Syndrome - my already hyperactive immune system wildly overreacted to the surgery, causing my body to go into shock and experience extreme pain. They tried different medicines to try to calm me down and help my pain so that I wouldn't try to get up or take off my tubes and wires in my confusion. I spent quite a lot of time screaming in pain.

Thankfully, while I remember more than I want to about the days following surgery, the clearest memories I have are of my wonderful family. My mom was by my side every single minute, except for the hour or two when the nurses kicked her out. My dad and brothers and sister came any time they could. I remember how calming and comforting it was just to hear their voices, to hear them talk about everyday normal stuff. I also remember Bryan Kervin of Rise and Conquer coming to visit me in ICU.

While my recovery from this surgery was excruciatingly slow, painful, and riddled with complications, not one thing that happened was a surprise to God. He did not change. He remained in control. The (literally) hundreds of you who wrote cards, sent emails, facebook messages, texts, flowers, gifts, balloons, visits -- your testimony of love and support reached many people in the hospital. And I was greatly encouraged, and many lives were blessed by memorizing Romans 5:1-11 with me.

One year later, I hit "SUBMIT" on my application for Physician Assistant School. While I'm much healthier than I was a year ago, I'm not quite healthy (yet). This year, God has brought me through two additional surgeries related to last year's surgery. And now, the Lord is allowing me to move forward again with my life, to some extent. One of my favorite Proverbs, one that pretty accurately describes my life, is Proverbs 16:9: "The mind of a man plans his way, but the Lord directs his steps." I make my plans, but the Lord directs my steps. Often, I end up walking a road that I would never have chosen to walk. But guess what? His plans are ALWAYS better. I would rather be where He wants me to be than anywhere else in the world. I'm excited about the possibility of PA school. I am confident that God will continue to guide my steps - whether it be towards PA school or in a completely different direction. And I am at peace with that. It may seem like uncertainty, but leaving something in the hands of God and trusting Him with the outcome is the furthest thing from uncertainty in the universe.

Hannah ;)

Voodoo

2011-08-18T18:52:00.000-05:00

Well, I hate to be a downer after Friday's blithe post about how everything was just working out perfectly... unfortunately, I have some rather interesting news to share. I got a call on Tuesday afternoon from KCI, the manufacturers of Edgar, informing me that my new insurance did not cover "Durable Medical Equipment," and therefore I would be responsible for paying cash for Edgar. I returned the call and left a voicemail, reassuring the lady that it was a mistake, we'd called both my insurance and KCI and been informed that my company calls Edgar a "Test and Procedure," which is covered.

I hadn't heard back from her, so I called again the next morning. Wednesday morning, just hours before I went to get Edgar hooked back up. The lady told me that I was misinformed. In fact, my insurance does not cover Edgar. After 3 solid hours on the phone, going back and forth between the insurance company, the wound care clinic's insurance verification lady, and KCI, we were able to elucidate that we had been given false information. The bottom line is that my insurance does NOT cover Edgar, but we (the wound care clinic and myself) were told repeatedly, by both KCI and the insurance company itself, that they did cover him. So suddenly, instead of being responsible for a pittance, huge dollar signs are flying everywhere. And I have to decide what to do by 3:00 that afternoon.

In the midst of this, I completely blew a gasket. I don't think my parents have seen me stomp my feet like that since I was a three-year-old. "This is a tens of thousands of dollars mistake that they've made! I trust God's in control, but it feels like He's not when STUPID people make STUPID mistakes!" I am thankful for my parents' leadership in their reaction - they were kind and reminded me that this is NOT a big deal or a surprise to God, that I had been responsible and done all that was in my power to do to verify what benefits I had. God is still in control. And He does what He pleases. And then my dad prayed.

I was also very thankful for Andrew's reaction. He handed me this little beauty, along with a box of pins.

Check out the front, noting the pins coming out of the eyes:

And the back, appropriately named:

While I was poking holes in my voodoo doll, the Holy Spirit was poking at my conscience with such verses as Job 2:10 - "Shall we indeed accept good from God and not accept adversity?" and Job 1:21 - "The Lord gave and the Lord has taken away. Blessed be the name of the Lord." I clearly saw my own anger, bitterness, and unforgiving heart. But I felt so justified in my feelings! I had this little internal dialogue with God:

"God, I was diligent and called and checked multiple times and they lied to me! If they had told me the truth, I would have had seven days to figure out some other plan! Now instead, here I am, a few hours before I'm supposed to get the WoundVAC back on, and what am I supposed to do? I know my anger is wrong, and that I need to be forgiving of these people... but do You realize what they have done to me?"

In my head, the answer comes: "Do you realize what YOU have done to me? My Son had to suffer and DIE, not because of an unintentional mistake you made, but because of sins that you purposefully decided to commit! Don't you remember the story of the unforgiving servant?"

Ouch. That stung worse than pins stuck in my eyes...

It might have been more productive and less infuriating to spend the time talking to a brick wall than to try to talk to my insurance company. To even get them to replay the recording of the phone call where they gave the false information, I have to write a letter, get it sent to a committee, who will consider for 30 days whether they should even replay the call. Who knows what I'd have to do to try to get them to make their mistake right. Probably wouldn't happen this year, that's for sure! I STILL am not entirely sure what the company will or won't cover - I spoke with 3 different representatives and received as many different answers. I believe they will cover the nursing care and doctor, but not the VAC rental.

Thankfully, KCI was more responsive. I got a supervisor's supervisor to replay the phone call where they erroneously assured me that my insurance did cover the VAC rental. They agreed that a mistake had been made, and they were sorry that I had been misinformed. I told them that was well and good, but I needed them to correct their error. I asked for 1-2 weeks of free VAC rental. This would give me the amount of time I would have had to look into other options, had I been given the truth a week ago when I called. To my surprise, I received a call on Wednesday afternoon, BEFORE my wound care appointment, informing me that upper management had approved my request. They are giving me free VAC rental for 12 days, beginning that day.

I'm pretty sure God was laughing at me and my reactions... after all, hasn't He ALWAYS provided for me? Has He EVER not provided something I needed? And, in a sort of sideways manner, didn't He grant me 12 FREE days of Edgar because of someone's mistake? I'm not really sure why I ever doubt His sovereign control of all things. I felt quite sheepish. He really is unreasonably good to me. And He loves to show SO CLEARLY that it's He who is the Giver of good things.

I also had to call back the poor wound care clinic lady who verifies insurance to ask her forgiveness. She had simply told me exactly what the insurance company told her (which turned out to be false). I was frustrated and short and really very rude to her on the phone, because she was telling me things that weren't true. But it turned out that she, of course, hadn't made any mistake at all... poor lady was also given wrong information by my insurance. Not that my attitude would have been justified if she was wrong... anyways, I asked her forgiveness for my rudeness and unkind speech and anger.

All in all, it was a very frustrating, humbling day. Any day when you spend over 3 hours on the phone with insurance is frustrating. And any day when God shows me so clearly what a sinner I am, how quickly I doubt His sovereignty, and how much I am in need of His grace is humbling. I pray that I don't soon forget the lessons I learned.

Hannah ;)

VAC-action

2011-08-15T19:50:00.003-05:00

I'm FREEEEEEEEEEEEEE!!

That's right! ;) I have been having a terrible time with the wound VAC dressing. It just does not stick to my skin. By the time I get home from the clinic, it's already peeling up around the edges and starting to leak. This essentially defeats the purpose of having Edgar - he can't do his job if there's no seal! I try to tape it down, paste it down, cement it down (utilizing different sticky stuff from the wound care clinic), but at best, it holds for 12 hours. And, as you can imagine, the sticking and re-sticking is 1). incredibly difficult to do to yourself, and 2). incredibly uncomfortable for poor raw skin!

I was supposed to try to hold out until Sunday night. Alas, by Sunday afternoon, I had re-taped/cemented/pasted the wound area 3 times since the Friday afternoon dressing change. And it just wasn't working. I had a lot of trouble sleeping on Friday and Saturday night because my skin is so uncomfortable and itchy and burning (like I have mentioned... I have good pain tolerance, but NO tolerance for itching!). So Sunday afternoon, after arranging enough mirrors to do carnival tricks, I pulled off the tape, closed my eyes, thought of England, and yanked out the foam.

I am free! I have been on the woundVAC for 47 days. I am so grateful for Edgar and the amazing work he is doing, but BOY, I am sure enjoying being tube free and tape free and device free* for a while! I feel so light and free! Every time I stand up, I keep trying to pick up Edgar - and then I laugh, because he's not there!

In the meantime, dealing with the wound is rather messy, but thankfully, my skin is already much happier than it was. Hopefully my skin will be all healed up by Wednesday, when I get hooked back up. Please pray that we will be able to figure out a solution to make the tape actually stick and hold up for a few days! This is crucial to the wound closing up! We have tried so many techniques and methods and tapes and glues and all sorts of things I didn't know existed. ;)

Hannah ;)

* With the exception of Squirt's bag - which is both a device and has a lot of tape.

Provision (and lots of time on the phone)

2011-08-12T22:05:00.003-05:00

This week has been interesting... God has continued to do exceedingly abundantly beyond what I could ask or think! To Him be the glory!

I have spent at least an hour on the phone every day this week, talking to insurance companies, KCI (manufacturer of Edgar), wound care nurse billing people, wound care DOCTOR billing people (yup, they are completely separate... THAT makes sense - NOT!), and some others that I've forgotten.

I think I forgot to mention in my last post that I saw the rheumatologist last week. It was a quick visit - sorta "yeah, you're flaring, sorry, we can't do anything about it until your wound heals." The two treatment options I have would both suppress my immune system and slow down my healing - exactly what I don't need right now! I had been needing to ice my knees every night - they would turn bright red and I could feel the heat radiating off them from all the inflammation. My fingers and wrists were very stiff, too. Thankfully, I think that the swelling and redness and stiffness has been better for the past couple days.

Rheumy ordered labs. Dr. Saturday wanted to run labs, but I had just had them done with Rheumy, so it would be simple to just send them over to him. So I thought. ;). Getting them sent to Dr. Saturday ended up being like pulling teeth. You know, I asked Rheumy's office to fax them to Dr. Saturday. They said that they had faxed them, and asked me to confirm with Dr. Saturday. So I called Dr. Saturday's office. Note: each time I say, "called their office," it means that I called, listened to the menu options, pushed the button, talked to a front desk worker, they send a message to the nurses, and then I wait for the nurse to call me back. This definitely contributed to my time on the phone for medical-related purposes this week. ;) Dr. Saturday didn't get it. Called Rheumy again. She faxed it again. Dr. Saturday didn't get it. Called a third time. They faxed it a third time. Called Dr. Saturday a third time. I may have mentioned that his MA is "Missinformation." "Nope, still didn't get it. Oh wait, our fax machine is out of paper!" Hahaha... fail.

The labs ended up being okay... not horrible, but not perfect. I ended up coming in to see Dr. Saturday on Wednesday. He was concerned with the obstructions, too. He ordered an MRI to make sure that nothing was going on. This was the exact test that would give me peace of mind, so I was so thankful that he ordered it. While I was waiting to get scheduled for the test, an older gentleman came and sat next to me. He asked me, "You getting a colonoscopy, too?" Without thinking, I answered, "Um, no, I don't have a colon anymore. But before they took it out, I had over a dozen colonoscopies!" I think I shocked him. I gave him a few tips on making the prep slightly less yucky. ;)

I called the MRI place today to see if they had read the report - I just didn't want to go into the weekend not knowing what it showed. I know I'm being an over-concerned patient, but I think I've earned that right at this point! They said that the doctor should already have it. Dr. Saturday is really, really good about calling right away, so I thought this was weird and called their office. Missinformation told me that they didn't have the report yet. I politely disagreed, and suddenly, she came up with the report. ;) Thankfully, the MRI turned out just fine, except for the huge cysts I always have. This was a HUGE relief to me. Of course, why I'm having all this pain and stuff remains unexplained. Dr. Saturday told me to wait it out til Monday, then call and give a report on how I'm feeling. Hopefully this is nothing and will just clear up...

I am having a really terrible time with Edgar. The tape is simply not sticking to my skin. So it's leaking - which, in addition to being very gross and messy, basically defeats the purpose of having Edgar. If there's no seal, you can't have a vacuum! My skin is also incredibly itchy, red, and bumpy, and burns like crazy. It's keeping me up at night (through my cocktail of night meds, which is impressive!). I will be honest here. I have a pretty high pain and annoyance tolerance. But I have a very low itching tolerance. So, I'm pretty miserable. If I'm not leaking wound juice and blindly re-taping (very funny to watch, I'd imagine!), I'm trying to not scratch the giant welt that is my skin anywhere the tape touches. Thankfully, the wound continues to close up - only 2.8 cm deep this week! It has closed up 6 cm! The length has also shrunk by 6 cm!

So... to finish off with the goodness of God, after all those telephone calls, I get a call on Thursday evening. To my great surprise, my new insurance WILL cover quite a chunk of the cost of Edgar, the nursing care, the wound doctor, and supplies! This is NOT what the policy indicated, nor what I had found in my phone calls... but it is true! This is a HUGE blessing and I am rather flabbergasted! God continues to surprise me with His goodness and faithfulness! I am also so blessed by the people at church who are willing to help cover the cost of Edgar - WOW!

Just wait - it gets better! Let's talk about God's timing! I have a two-day lapse in coverage next week. Paying for wound care and Edgar rental would be just a ridiculous sum, even for those two days. Well...remember how my skin really needs a VAC-action? I will stay hooked up to Edgar until my current insurance runs out (or until the dressing falls off, or until I can't stand the itching for another minute) on Sunday night. I will then unhook from Edgar and unpack the wound myself (which should be interesting), and NOT pay for Edgar for those days! When the new insurance kicks in on Wednesday, I'll return to the wound care clinic, get the wound packed, and resume therapy with Edgar. The days without Edgar will be very yucky and messy and painful as the wound will just be open and oozing - not quite sure how I'm going to manage this - but hopefully my skin will benefit from the tape-free time.

The best part of all of this is that God has given me two opportunities so far to share the gospel with people because of this. He is so clearly being glorified as He provides!! Praise His name. As I shared with a friend today, the most important think He provides is not a woundVAC or physical healing... it's the forgiveness from sin and right relationship with Him that came about through Jesus' death and resurrection.

Hannah ;)

Great is Thy Faithfulness!

2011-08-08T01:10:00.000-05:00

I'm still up so late because I've been messing with Edgar... unfortunately, the seal on my wound completely busted again. This (3rd today) time, I think I fixed it okay-ish. I think the main problem is my skin. It is very irritated from the tape. I basically have hives everywhere that the tape touches me. After a while, the hives give way to little bubbles, and the skin just peels off. It feels about as good as it sounds. Even if it were in a place where I could politely scratch, haha, it's under tape. They also have to tape a "tracking pad" (a thick line of the foam) up from the wound, across my bottom, to my hip in order to attach the tubing that leads to Edgar. We have to alternate "cheeks" each dressing change because the skin is literally falling off. It's bad enough that the doctor and nurses are considering taking a "vacation" from Edgar (and therefore, this special tape) to give my skin a chance to heal for 2-3 days. Anyways, all's well that ends well, and I think I got everything taped down again so I'll stop dripping wound juice tonight! ;)

Got my wound remeasured on Friday. Again, made the nurses and doctor look good. ;) It's half a cm smaller than last week... not nearly as dramatic as the 3 cm from the previous week, but still very excellent progress! Everyone is thrilled. The doctor said he has a good feeling about how all this is going - quite a change of tune from, "You have so many risk factors - UC, poor nutrition, steroids - that I am not sure that you'll heal well." Every nurse who sees the wound is amazed at how much better it looks compared to when we started. It's still big, but it's not the huge ugly gaping hole that it was. Praise God! By the grace of God, Edgar, our therapy with Prisma (artificial collagen), a smaller piece of foam, and me pounding down the protein every time I eat... it's working!!

On Monday, we added in a wash of a crushed-up antibiotic pill dissolved in water. There's no infection, thankfully, but, there is an ah, olfactory that conjures memories of my microbiology lab. Turns out that bacteria love to hang out in the foam. These aren't bad bacteria - they are the normal bacteria that colonize your skin (and therefore, my wound)- but when it's warm outside... they tend to overgrow. ;) So far, the pill powder is doing the trick!

So... in one of my last posts, I mentioned that I'd be losing Edgar due to insurance. Well... some very determined brothers and sisters decided that shouldn't happen. Not sure how I can possibly thank you, except to tell this little story:

I was talking to a friend last week about the situation, and I just expressed faith that God would provide for my needs. I wasn't really thinking, "God will provide for my needs by allowing me to keep Edgar." I said that He's always given me and my family exactly what we needed at exactly the right time. He can heal me without the woundVAC. He can do whatever He wants. I also mentioned that He tends to do these things in ways I never would have thought of.

So after Sunday's happenings, I called her and said, "Hey, guess what God did?" I was able to explain to her that thanks to the generosity of others, I'm keeping Edgar. She said, "Wow, I really don't know what to say, except that your God is pretty awesome." Isn't He? He provided just as He has promised... and, just like I had said, not at all in the way I thought! And I got to share that with my friend. He is putting Himself and His faithfulness and goodness on display through people like you all. Who knows the impact this will have?

Couple of prayer requests:

I have been having more and more abdominal pain and pain in general. I also have had 2 (very painful) obstructions since Sunday. I'm going to see Dr. Saturday tomorrow, because something just isn't right. I am really feeling quite terrible and having lots more pain than normal.
Please pray for my skin to heal up and for wisdom for the nurses and doctor for managing the reaction to the special WoundVAC tape.
Praise God - I have gained 10 pounds from my lowest weight in March!! This is a very hard-earned victory! I'm back up to where I was in December - not at my healthy weight, but not hovering near double digits anymore!
Patt, my friend with Crohn's who I met in the hospital in March, is very ill and discouraged. She spent over 3 months inpatient this spring and had two surgeries. She is facing surgery yet again in the next few weeks. Please pray for encouragement for her soul and healing for her body. It is so devastating to imagine her enduring another surgery and long recovery several states away from home - she comes here from Colorado for treatment.
Hollye, a J poucher I also met in the hospital in March, is back in with an obstruction.

"Why do you worry? What possible use does your worrying serve? You are aboard such a large ship that you would be unable to steer even if your Captain placed you at the helm. You would not even be able to adjust the sails, yet you worry as if you were the captain or the helmsman of the vessel. Be quiet, dear soul - God is the Master... Believe this and you will have peace." Charles Spurgeon on Matthew 14:27.

I continue to be completely amazed at God's work... He is so good and so faithful!

Hannah ;)

Adventures of a Semi Colon: Last night I had the strangest dream/I ever dreamed before...

2011-08-06T20:00:00.002-05:00

I dreamed that my whole family woke up in the night to find the house on fire.

Everyone began grabbing treasured possessions as we called the fire department and made for the safety of outdoors.

What do you think I did while everyone was collecting photo albums and valuables? I grabbed my navy blue duffel bag and stuffed it with as many boxes of ostomy supplies as it would hold. Seemed pretty logical to me in my dream. Those supplies are darn expensive!

Hannah ;)

Long Update

2011-08-04T16:00:00.000-05:00

Okay, so sorry for no updates in a while, so this may be long! I was hoping to NOT have to post bad news... alas...

I went to see Jack Black last week. It was good - I was pretty stable. That is to say, most of the time on most days, I get enough pain relief to function. This takes quite a cocktail of several strong meds, but it works. Some days, I don't need much medicine. Some days, I take up to my limit, and still hurt too bad to move. Most days are somewhere in between. This is pretty much the ideal goal we've been working towards for the past 18 months. We are thrilled to have attained functionality and a much better quality of life!

He gave me a big hug when I introduced him to Edgar. He said he can't imagine going through the wound changes. Honestly, though, I don't know if I'm just used to them now, or what, but they are becoming less painful each time. Which is great!

On Friday, I got my wound measured. Remember, last week, it didn't get at all smaller. We were stuck at something between 6 and 7 cm deep. Well, Friday, that sucker measured in at 3.9 cm!!! Praise God!! We made some changes that week - packing the wound a little differently, and I pounded down the protein 5-6 times a day, even if I felt sick and un-hungry. The doctor said it's my job to make them look good! I did my job well on Friday, much to everyone's delight.

The nurses commented that the WoundVAC would seal better if I could just avoid getting sweaty. I asked them if they had any tips for how to accomplish that during the worst heat wave ever in Texas while driving around in a car with a sub-par AC. The nurse said, "Well, I'M going to Colorado this weekend!" Hm... maybe a trip of medical necessity? ;)

I also had my one-month follow up with Dr. Saturday. I was feeling fantastic, energetic, really, just GOOD. I told him that this is the best I've felt in 3 years! He shook his head and said, "What a struggle!" It's sure been a long road getting here.

Okay, here's the bad news. Friday evening, just HOURS after my good report at the wound care clinic and surgeon's office... I started feeling bad. Feeling exactly like I felt before my surgeries - that feeling that something is not right. Feeling like I have abscesses again. I was pretty draggy all weekend. My belly just hurts and I've been getting shaky. My muscle pain is also flaring up something fierce. The good news is that my stomach is actually working - no dumping - even without meds to slow it down. I noticed this because I am getting waaay stoned on pain meds that usually don't phase me. I figure I'm actually absorbing them now, haha! ;)

I went to the normal doctor to get checked out to make sure I didn't have something "normal" like a UTI (my abscess symptoms always start with bladder pain and issues, and I had those same symptoms this weekend). I didn't. They checked my labs and felt my belly, and thankfully, nothing seems at all alarming or terribly off. I still am feeling pretty crummy. Hopefully this is just nothing... just my body being quirky, as usual...

The other news is that I will be losing Edgar at the end of next week. My current insurance (the story of how I have this insurance is a long, but it is clearly an act of God) will run out at that time. Thankfully, I was able to get some other health insurance (which is another long story, but is also clearly an act of God). The new insurance, sadly, will not shell out one penny towards the thousands of dollars that renting Edgar costs each week. Unless I am hospitalized or declared "totally disabled" in the next week (although it's not terribly too far-fetched to imagine either one of those things happening), I will lose Edgar.

This is NOT the end of the world. People have healed without WoundVACs for the past however many thousands of years. It just means that my wound will take much, much longer to close up. We were looking at many more weeks. So now it's gonna be many more months. It probably will not heal in 2011. I know that God is good and He always provides - He just doesn't always do it in the way I wanted Him to (go figure). But I tell you what, since I found out I'm losing Edgar, I sure quit complaining about being attached to a little pump all the time! He may be a bit of a pain, but he is helping my wound heal faster.

Finally... yesterday was my birthday. Last year, I got out of the hospital on the afternoon/evening of my birthday. I felt horrible. I was in a ton of pain. I was depressed. I was pooping blood multiple times an hour from my dying J pouch. I wasn't sleeping. I could hardly move because my joints were so messed up. I had just found out I definitely needed surgery to remove Twitchy the J pouch. I felt so yucky that it was all I could do to eat the sprinkles off the top of my ice cream - I didn't even have dinner. Yeah, this year was a LOT better. No, things aren't perfect. But they sure are better than last year. I am truly thankful for each day of life that God gives me!

Hannah ;)

Happy Ostomy Awareness Day!

2011-07-31T12:11:00.003-05:00

Today, July 31, is Ostomy Awareness Day. I found this out through Jackie's blog. She is an earthy chick who has been through the wringer with MS and UC, requiring numerous surgeries.

Unfortunately, I'm sure you won't hear Ostomy Awareness Day advertised. In our society, having an ostomy is a taboo topic and highly stigmatized.

It's like how breast cancer used to be. No one wanted to talk about breasts, so breast cancer was a deep, dark secret for women for years. Thankfully, due to the hard work of many people, breast cancer now has more treatment options than any other cancer, and mortality rates are plummeting. We see pink ribbons everywhere. Breast cancer is publicized by the media and at football games and at the grocery store. It's amazing what raising awareness can do.

Lamentably, awareness for ostomies and IBD (Inflammatory Bowel Disorders) is still in the dark ages. Yeah, maybe ostomies are a little gross. No, they are not pretty. But diseases like IBD and colon and bladder cancer threaten the health, productivity, and well-being of millions of people. Many people with Crohn's and UC and cancers would greatly benefit from surgery to remove diseased bowel or bladder. For cancer patients, this is life saving. For those with IBD, it can restore the health we've lost and give us our lives back.

Sadly, people often shy away from these surgeries, because they are afraid of having an ostomy, whether temporarily or permanently. To these people, an ostomy is a worse fate than death or constant chronic pain and sickness.

I admit, I was once in this category. When my doctor first told me about J pouch surgery, he told me that some people choose to live with an ostomy rather than a J pouch. I looked him square in the eyes and said, "Well, that won't be me. We'll make the J pouch work, because I am NOT living with an ostomy forever." I never pictured myself with a permanent ostomy.

We need to raise more awareness about life with an ostomy. C'mom, people, having an ostomy is WAY better than the alternative. We need some vocal positive role models to show people that LIFE GOES ON after ostomy surgery... and it's usually much better than life was before surgery.

Is life with an ostomy different? Yes. Very different. I no longer have bloody diarrhea 15 times a day. Instead of running to the bathroom and having accidents, I can choose when to empty my bag. I no longer have constant stomach pain and cramps. I can attend events for hours and not need to sit near a bathroom. I am no longer anemic from blood loss. I have zero chance of ever getting colon cancer. ;) I don't smell like poop, and no matter what I wear, no one knows I have an ostomy unless I choose to tell them. I empty my bag whenever I feel like it, and I only have to change my bag out once a week, which takes me all of 5 minutes. I don't feel sorry for myself, and I don't feel different or ugly because of my ostomy. I feel better than I did with UC.

Here is a pic of me about to dive off a 5 meter platform (with Squirt, my ostomy, although I'm willing to bet you can't see him). I'm on the left, Claudia is on the right. There is really nothing you can't do with an ostomy. Rolf Benirschike, the NFL's 3rd most accurate place kicker ever, had an ostomy. There are ostomates who are firemen, mountain climbers, triathletes... you name it! Chances are, you know an ostomate... they just haven't told you about their ostomy.

More information on Ostomy Awareness Day.

Another site doing a great job of raising awareness and destroying myths about having an ostomy.

Hannah ;)

Leaky Seals

2011-07-27T21:52:00.003-05:00

It's been almost a week since I updated... I've been really busy with school and NORMAL life, which is amazing. I like it. I am still having daily headaches, fevers, joint pains and swelling, but I am functioning and more or less passing for normal.

I had some pretty major issues with Edgar after the Friday change. He was just really loud, which means there is not a great seal on the dressing. When there's a bad leak, you can actually hear hissing from the air being sucked into the vacuum tube. On Sunday, I started hearing hissing. I used an entire sheet of tape trying to tape down everywhere I heard hissing. Then it started leaking. Wound juice was oozing everywhere. I used up tons of tape trying to re-seal it.

On Monday, I walked into the building to take a test in my genetics class. I visited the ladies room before the test, and discovered that... my wound was leaking everywhere. Great. I stuffed the dressing with toilet paper, took my test in record-breaking time (racing against the wound juice soaking through), drove home, and tried to patch it up again. It lasted for a little while, but, alas, not long. I tried again to fix it and ended up in a puddle.

I called the Wound clinic, but by then it was 8:30 pm, so I had to explain the situation to the on call receiver, which was, um, interesting. Then she got someone else, and I had to tell the story again. At the end, she said, "I'm actually in training. Let me have a real nurse call you back." Thankfully, the on call nurse quickly called me. I related my story for a third time, and she said, "Well, what you need to do is turn off the WoundVAC, take off the dressing, remove the foam, clean out the wound with sterile saline, pack it with sterile gauze, tape it in place, and go get some adult diapers or something to protect against the drainage."

Ok, but... do you understand WHERE this wound is? I got this awesome mental image of me doing all kinds of contortions to try to take care of this myself. I was envisioning me doing a backbend sort of thing, supporting myself with one hand, while the other hand is removing tape and packing. My head is doing 360s to try to see what's going on. Maybe I'd open the gauze with my toes. Problem is, I can't see what I'm doing, much less get the foam out (which has taken two nurses, with lots of tugging and pain), clean the wound, and repack it. And even if I can do that and tape it, since it's between my legs, the size changes any time I move, and the packing will not stay in and the tape will not hold. She asked if I had a friend I could ask to unpack and repack the wound. I've seen the wound, and it made ME nauseated - and I am not easily grossed out. Even if the wound weren't in such a, um, private area, I wouldn't subject anyone to that.

I was mildly upset at this point. I don't know; maybe all this doesn't sound like a big deal, but it is so very uncomfortable. Here I am, leaking wound juice all over the place. You feel so helpless and dirty and humiliated. It reminded me of when I first got Squirt and I had issues with the seal breaking and poop getting everywhere at MOST inopportune moments. Thankfully, my friend Megan was over, and helped me stay calm. I whined about how much this stinks for exactly 20 seconds, then we moved on. ;)

I ended up calling the wound care lady back. She said she was about to call me back. She remembered me, and the location and size and nature of my wound. On second thought, she figured I had better not try to mess with it or have someone else mess with it. I was supposed to come into wound clinic the following afternoon. I just asked if I could come in first thing in the morning, and she agreed.

I got there at 7, they changed the dressing, and I felt so much better. The foam again was super hard to remove, which confirmed in everyone's mind that it would not have been good for me to try to mess with it. Edgar was quiet, the wound wasn't hissing, I wasn't leaking, and I was as comfortable as you can be with a piece of foam up your rear, taped securely into place. The nurses said they felt terrible for me and were happy they were able to help. They are so sweet. I even was able to make it to the opposite end of the metroplex in time for my lab practical by 8:50.

I should tie this post together with some inspiring story about how we all are leaky seals and need to tape each other down securely or something... but, sorry, I'm out of analogies. I can't think of a clever way to drive home whatever huge spiritual lesson a leaky woundVAC dripping wound juice in my pants represents. ;) I guess I am just thankful for the sweet nurses who call me back at 9:30 at night to help me and come in early to work and never complain about having to stick their hands in yucky places and work for over an hour multiples times a week to help me on my journey to a life without ulcerative colitis.

And I already think that this whole story is slightly funny, which is a good thing.

Hannah ;)

MORE Wound Care

2011-07-22T19:01:00.002-05:00

Today was wound care again... once a week I have "Assessment Day" where the wound care doctor measures the wound and takes a good look at it to assess my progress. Just like last week, the tissue looks fantastic - very red with lots of blood supply, and no infection. Unfortunately, the measurements are also exactly the same as last week. The wound has not closed up even a millimeter more. This is disappointing for everyone. The new plan is to put in this stuff (and of course, I've forgotten the name of it by now) that is like synthetic collagen. Collagen is the connective tissue that holds our bodies together. The theory is that this synthetic collagen will stimulate my body to make its own collagen to start pulling the edges of the wound together. Hopefully this will speed up the healing process.

We also made a major breakthrough. The nurse soaked the foam in lidocaine for a few minutes. This made the entire experience much less painful. YAY!

The bummer was that I had to listen to a nurse whose husband and husband's aunt have food intolerances (diagnosed by a doctor who got kicked out of/left Baylor), and have cured themselves with supplements from different websites and treatments from a doctor in Canada. I do not wish in any way to minimize their sufferings, and I am very happy that they have found health! However, it was very frustrating to have to listen to her for an hour and a half as she told me that I could have prevented all this by going gluten-free and taking supplements from these websites. She kept going, even after I explained that I did gluten-free for several weeks without effect. I also have had negative biopsies and blood tests and stool tests for gluten and celiac issues. I also continue to have symptoms even when I am not using my GI tract at all for weeks at a time. This had no impact on her, and she continued to go on and on. I just kept smiling and trying to be gracious... but, believe me, it was far from easy. ;)

Unfortunately, I have had a migraine since Tuesday. I went to the chiropractor today, which helped for several hours, but it's back again with a vengeance! It's making me pretty nauseated, so I haven't been eating well this week, which may be impacting my wound healing. I am also running low grade fevers and shaking all over (the nurses were like, "Do you realize you're trembling?"), probably because my arthritis is flaring. Also, they had to put in a more "bulky" (read: uncomfortable) dressing today, and Edgar is plugging away quite audibly. So I am a little bit throbbing and miserable all over...

But guess what? God is still good, and gives me more than I deserve in Christ! I had a neat opportunity to share just a little with the wound doctor. He commented that it's just not fair what life has dealt me, and that he doubted that he could endure a fraction of what I go through daily. I told him, "Well, life is not fair, but God is good!" He shook his head and said something about that showing unusual grace. He left just after that, but I know I'll have many more opportunities to share the hope and perspective Christ gives, as it looks like I'll be a fixture at the wound clinic for some months!

Hannah ;)

More Wound Care

2011-07-19T22:09:00.000-05:00

I had another wound change, and boy, was I ready for this one. Friday's dressing left me very uncomfortable and hurting all weekend. I was dealing with leaks any time I moved (I had to do patch jobs every day, without much success), and my skin has started to itch quite intensely under the dressing. And it basically felt like I had a giant cocklebur in my wound. But really, I've been blessed - this weekend was really the first time that I had significant pain and discomfort from the wound. All that to say that I was actually excited to get the foam changed today. ;)

It was a tough dressing change; the tissue had really stuck to the foam and it was very difficult and painful and took a very long time and a lot of tugging (at least, it seemed that way to me!) to take out of the wound. Thankfully, the wound is showing no signs of infection, despite all the leaks and patches I had to do. My skin is really not a fan of the tape; in some places, the skin is bright red. In other places, the skin actually bubbles and peels off from the irritation. The nurses think that the itching and increased pain are a good thing - they are signs of healing. Let me just say again, I am continually thankful for the kindness and skills of the wound care nurses. They are so good and wonderful. They really do their best to make a very unpleasant situation more comfortable. And thankfully, I'm a bit more comfortable now with the new dressing.

As of last Tuesday, I am all caught up in my summer classes! And I took the GRE on Saturday. I had called the GRE and the testing facility prior to the exam to make sure it was okay for Edgar to accompany me in the test room. They said yes, thankfully. On test day, it was fun explaining Edgar the WoundVAC to every test proctor in the building. ;) I'm working on applying to Physician's Assistant programs. Most of them are 3 year Master's programs. If I'm accepted, I would enter in fall 2012. Now I just have to figure out a job or something until then! ;)

Hannah ;)

Guarded Optimism

2011-07-15T21:31:00.004-05:00

Today I had a follow up with Dr. Saturday. I actually saw his partner, because Dr. Saturday is out of town. Everything is going well, just have to continue with the WoundVAC. POOP STUFF: I'm still dumping something awful most days, so I asked him about the imodium. Turns out I can take up to 8 a day! He told me the goal is to have less than 1000 mL (1 liter) of output from Squirt daily. Oh. By the time I saw him at 12:45, I'd probably already had that much output. And I'd taken 2 imodium. He was rather impressed with my motility. ;) He said there's no way I can possibly stay hydrated when I'm dumping that much. He gave me a stronger med to try, one I'd taken in the past for UC. It worked better than imodium for me, so hopefully that's still the case! I'm excited to find the right combo. I really think that being able to keep my guts under control will really increase my quality of life! Being dehydrated all the time just makes you feel awful. And having everything go through me so quickly can really get me in trouble with absorbing some of my meds.

I also broached the topic of the whole wound care 3x/week. "Maybe we can do it twice a week?" He said sure, as long as I'm not having problems with the WoundVAC leaking, and if the wound doctor agreed. ;) Yessssss!

Next, I went to the wound care clinic. Everyone remembers me and is soo good at what they do. It is really a night and day contrast to the local clinic... Once a week, I have to see a wound doctor to assess my healing. He continues to balance optimism and reality. The tissue in the wound looks great; it's bright red, which means that it's getting lots of blood flow and nutrients to heal. The wound is getting smaller, too. He was very clear, however, that my wound has an extremely long way to go. It's still really deep. He was also guarded with his optimism and reminded me that I likely will not heal quickly or well due to my history of ulcerative colitis. He asked me if I was comfortable (if my wound hurt). I mentioned that I'm sitting in class from 8:50-3:00 Monday through Thursday. He winced and shook his head. He didn't say that I was doing anything harmful, just seemed very surprised that I could even tolerate sitting at all on my large, gaping wound. I asked him his thoughts on decreasing the wound care to 2x/week. He said that they usually change woundVACs 3x/week. This is because most people have WoundVACs because their wound is badly infected. Thankfully, mine is not, so he felt comfortable decreasing to twice weekly wound care. YESSSSS!

GRAPHIC WARNING: The wound changes are getting less painful. I can't even describe how much it hurt originally. Now it's better, although still very painful. To begin with, it's just in a very, ah, sensitive area with lots of nerve endings. First, they must remove all the tape and the previous piece of foam. Like I mentioned, the new tissue grows into the foam that fills my pelvic cavity. Each time they remove the dressing and foam packing, they actually rip out visible pieces of tissue along with the foam (this is actually supposed to encourage the cells to divide more rapidly and speed up the healing process). Then, after cleaning and measuring the wound, they tape "drape" around the healthy tissue to protect it from the suction of Edgar. Next, they must stuff a new piece of foam into the wound. This involves a lot of poking and pushing of the very raw, bleeding tissue of the wound. Then, they tape everything into place. They run a strip of the foam from the wound up to my hip. They affix the tubing - a small suction cup type thing with tube coming off it - to my hip, and attach Edgar. They must alternate hips, because the drape to protect my skin and the constant suction actually breaks my skin down. If everything is not taped down very securely, Edgar is very noisy (like a coffee maker). So they must apply pressure around the seal in various places to try to find the leak(s) and fix them. The wound is actually much more comfortable when it's packed (provided I have a good wound care person doing the packing). These days, the whole process takes between 35 and 90 minutes (35 -45 at the clinic, because the nurses are just so good at doing this).

Interestingly, Dr. Saturday sent me the pathology from the (least favortite phrase coming up again...) anal canal/tiny part of rectum/bottom of J pouch he removed. It showed a lot of inflammation and significant ulceration. It was very clearly ulcerative colitis-type inflammation and showed absolutely none of the markers that indicate Crohn's disease. This is good on several accounts. First, it means that prior to this surgery, there was still a part of my body that my immune system was attacking pretty severely. This means that my immune system in general may calm down now that the offending tissue has been excised. Secondly, there's always been a fear that I have Crohn's, not UC. Crohn's could come back in any part of my remaining intestines, which could be detrimental to my health, since I already lack so much length. Since the pathology looks like UC, this means that I likely do NOT have Crohn's and that the rest of my GI tract should stay healthy (although, admittedly we know that my remaining guts are a little bit "special" and don't work exactly like they should).

I don't want to declare "Victory!" too soon, but I think we're making progress! I am having a small amount of joint swelling and stiffness, mostly in my hands, and some muscle pain (and some soreness in my wound, especially after sitting), but honestly, my pain is really not so bad. I am able to manage it with a very reasonable amount of meds. Of course, there are bad hours here and there, but nothing NEAR the "pain flare" I experienced after my April surgery (where I ended up in the ER because I was hysterical from severe pain). I am unspeakably thankful for this. I'm hoping to cut back on steroids again in the next week or so. I'm working towards being able to manage my hydration issues. I'm rarely nauseated, and I'm eating so well. I really think that God is allowing my body to repair itself... and I'll continue with guarded optimism.

Hannah ;)

New Meds and Wound Care

2011-07-14T22:18:00.000-05:00

Wednesday was a day of many small victories... Dr. Saturday and I talked about the ER visit. He wasn't concerned about the elevated white count. He thought it was likely due to my open wound. He agreed with me to hold off on antibiotics, especially with all the trouble I've been having with my stomach.

He asked why I ended up in the ER, and I told him that I just got behind on fluids and was dumping really bad. No matter how much I drank, I just couldn't catch up. I was slightly shocked to hear him say, "You're right. You can't catch up! There's just no way." Um, ok... so what do I do? Amazingly, he had a plan... everything goes through me so fast that we need to slow down my intestines. That way, I actually have a chance to absorb stuff. He told me four different medicines I can try to use to accomplish this. They are all medicines I've taken in the past (and I still have bottles of 3 out of 4 of them), back in my UC days before I was a Semi Colon. I always feel so guilty if I have to go get fluids. I feel like if I had just been able to get more fluids in by mouth that I would have been okay. So it was nice to hear him say that it really is impossible for me to stay hydrated on my own at times.

I tried the meds, and eventually I was able to meet with success. To give you an idea... I took 6 immodium over several hours before the dumping even slowed down. I'm continuing to play with the meds to find the right amount to take based on how I'm feeling. I'm just glad that there really is something I can do to stay hydrated!

We went back to the downtown wound clinic on Wednesday. It was a somewhat miserable drive with a horrible back up from an accident. The difference with the care compared to the local clinic, however, was night and day. The nurses knew exactly what to do, and they did it quickly, efficiently, respectfully, and professionally. And they did an excellent job. Thankfully, the wound changes are getting less painful. They still hurt, but it is not excruciating or long-lasting pain. Yay! I'm thankful for the great care, even though it is a much more significant time investment.

Another wound change tomorrow!

Hannah ;)

ER and Wound Care

2011-07-11T21:53:00.000-05:00

Well, what I neglected to mention in my last post was that I've been feeling rather awful since I got home from the hospital... super tired, very lightheaded, heart racing. At the wound clinic, my blood pressure was extremely low. I tried to drink a lot, but then I started dumping... I just got behind on my fluids, and I couldn't catch up, because my stomach decided to quit absorbing anything I drank. I talked to Endo Doc on Friday, and she told me to double up on steroids for a couple of days. If that failed, I was supposed to go to the ER for fluids. I don't really think steroids were the issue. When I am low on steroids, I have ridiculous salt cravings and I get really shaky, two symptoms I did not have this weekend. But I figured it was worth a shot!

Unfortunately, by Sunday, I still felt pretty awful, so to the ER we went. I felt tremendously better after I got "topped off" with some fluids, as my awesome nurse Mark put it. My white count is back up again, after having gone down to the lowest it's been in recent history. That's disappointing and a bit concerning, so per the ER doc's instructions, I placed a call to Dr. Saturday to see what he wants to do - probably more antibiotics.

My tummy is still dumping, which makes staying hydrated quite a challenge for me. And it's annoying because I have to empty Squirt's bag every hour. I'm working hard at pushing the fluids! Thankfully, I've been doing pretty well otherwise - my muscle pain has been mostly under control, and my joints are really doing fantastic! I've also been able to eat, mostly, despite the dumping, which is very good and exciting!

I had another wound change today. We tried out a local rehab clinic. Unfortunately, they don't quite have the resources or experience that the downtown wound clinic offers... and they only have male wound care people. I wasn't at all comfortable with the situation. So we've decided to bite the bullet and commute to the downtown hospital three days a week, on top of my school schedule that has me at the complete opposite end of the metroplex. This is a major bummer, but I think the drive will be worth it to get really good care delivered in a slightly more comfortable setting. The guy at the clinic did take a picture of my wound so I could see it (the photo was subsequently deleted, per my wishes). Boy howdy. It is gaping and bigger and uglier and far more graphic than I had imagined, and trust me, I have a pretty vivid imagination. I now understand why it's going to take so long to heal. It's amazing to me that God created our bodies so that they can heal even from massive injury and illness... He is amazing!

Please pray that my stomach will settle down so that I'll stay hydrated!

Please pray for wisdom for Dr. Saturday to decide what's best to do!

Please pray for my attitude, especially with the wound care... it is still very a very painful, time consuming, unpleasant, and embarrassing process. But necessary! This care will involve many, many hours each week for the next several weeks. But this is clearly what God has for me right now, and I'm trying to find joy in Him and be thankful in the midst of it.

I am taking summer classes - returned to class today - and I'm hoping that the downtown clinic can accommodate my schedule so that I won't miss class for wound stuff.

Hannah ;)

Adventures of a Semi Colon: Hannah vs. Edgar

2011-07-09T11:40:00.003-05:00

Be ye warned, this is an epic tale about a girl and her WoundVAC.

WoundVAC has been dubbed Edgar (think J. Edgar Hoover... think Hoover as in vacuum... got it?), many thanks to Heidi. Edgar has quickly proven himself to be a high maintenance side kick. Here's a picture of Edgar: (Actually, this is someone else's WoundVAC. Edgar is indistinguishable from this. I just don't own a camera to take a picture of him, so I Google imaged him). On the upper right, you can see a tiny bit of the tubing. That tubing attaches to my wound. You can also see part of the power cord (black plug with big white arrow on the bottom left). This becomes important later in the story.

On Tuesday night, the seal broke, resulting in horrible, nasty messes. That wasn't really Edgar's fault, but we'll blame him anyways.

Wednesday, the wound had to be repacked due to the broken seal. Again, not his fault, but again, I'm blaming him.

Thursday... I arrived at home with my portable Edgar. He gurgled continuously like a coffee percolator when the water is almost gone... you know that sound? To muffle the sound, I put two pillows and a blanket on top of him so I could sleep through the noise.

Friday morning, I woke up, elated that I had slept through the night. The pillows and blanket really did the trick; I couldn't hear Edgar at all. I uncovered him, only to realize that... he was dead. Yes, I had forgotten to plug him in. I'd like to blame him for this, but I really can't.

I quickly dashed across the room for the power cord I'd been given by WoundVAC Guy Who Thought I Was Under 18... forgetting, in my haste, that I am attached to Edgar at the... not hip, but you get the picture. OW. I picked him up, plugged him in, hit the power button... and... nothing happened.

Pictures filled my mind. I had no idea how long Edgar had been dead. And I have no idea what happens if your wound that is supposed to be being VAC'd (parse THAT, if you please) stops being VAC'd. But if it's anything like my mental pictures, it's probably really awful. ;)

I waited another hour, and tried hitting the power button again. And again. Nothing. And again. Black screen. I started pawing through my hospital paperwork, and found the number to the wound care clinic. Unfortunately, they couldn't help me; I needed technical support. Called technical support. It, ahem, turns out that you have to hold the power button down for, um, several seconds, and then the screen turns on. Yeah, definitely can't put that one on you, Edgar.

On Thursday night, I carefully plugged in Edgar, covered him with the requisite pillows and blanket, and drifted off. Friday morning, I awoke to a gurgling Edgar, and the sound was music to my ears. I unplugged Edgar to go to the wound clinic for a dressing change. What's that thing blinking on the screen? Low battery?!? But Edgar, you were plugged in all night! I fiddled with the charger, and turns out that the charger slips effortlessly out of Edgar when it should stay put. Edgar, sorry, buddy, this one's on you.

I waited in the clinic next to an outlet and held the cord in Edgar so that he could charge. Three hours later (I kid you not), the dressing change was complete. My nurses did SUCH an awesome job that Edgar was almost completely silent! Turns out that the noise he makes is directly proportionate to the amount of leak in the vacuum seal. These nurses did a fantastic job, ergo, no sound. Goooo nurses! One of the nurses wished me well and said, "Hopefully you're on the tail end of your health problems." Dunno about that, but SOMETHING is certainly on MY tail end!!

The only downside of the day was the doctor. He was a little old guy who walked in after the nurses had unpacked my wound. I was lying in the fetal position, covered by a sheet, open wound throbbing in a way that's difficult to describe. My bookbag, clothes, and waterbottle were sitting on the lone chair as I lay on the table. He started out by saying, "I'm just going to put your things here on the floor," as he proceeded to sit in the chair.

Those of you who know me, know my compulsion about hospital and doctor's office floors. I've seen what gets on them, and my bare foot will NEVER touch those floors, on pain of death. I walk with shoes on anytime I get out of my bed in the hospital. If there's only one chair in an exam room, I hold all my belongings in my lap. If I have to put on a gown for a procedure, my shoes (which have touched contaminated hospital floors) go in a separate bag from my clothes. So I minorly freaked out and said, "No, no, NO, please don't put them on the floor!!"

So he reached over to set them on top of a big red biohazard trash bin.

"Ah no, no, no, please give them to me, I'll hold them, please don't put them there!!" The nurse saw my consternation, and set my stuff on the table. Whew. My belongings had narrowly escaped a terrible fate and a nasty end. I would have had no choice but to incinerate/autoclave them, and unfortunately, my bookbag contained a library book. Not good for my relationship with the City of Grapevine, especially since I think I have some overdue fines.

The doctor, despite his questionable hygeine, turned out to be nice enough. After measuring my wound (guess what? It's still big and deep! But less big and deep than it was originally, thankfully), he left me with this tidbit: "WoundVACs are a great advance for helping wounds heal. Unfortunately, this is a deep wound in a, ah, challenging area. It'll take several weeks." He looked at my chart. "Oh, wait, so you had colitis? Oh, man, ah, people with colitis tend to not really heal up down there." So on the one hand, woundVACs are great. On the other hand, UC is not. Let's hope Edgar's greatness overrides UC's terribleness. I'm rootin' for ya, Edgar!!

As I was leaving (with a blissfully silent Edgar), I ran into WoundVAC Guy Who Thought I Was Under 18. "How's the VAC workin' for you?" He asked jovially. I related my power cord woes (NOT the user error woe where I forgot to plug him in, the part where the plug wouldn't stay in place), and he said, "That is a complete pain! You shouldn't have to deal with that! Call the number on the back of your VAC, and they will bring you new parts or fix it." W.VAC G.W.T.I.W.U.18, you are the greatest.

I called on the way home from the hospital, and within an hour (I kid you not), a KCI rep was at my door with a replacement Edgar. KCI, allow me to announce in the public domain, your customer service and technical support rocks. My doctor's office should call me back so quickly. The whole Edgar had to get exchanged, and my new Edgar puttered away very quietly.

This morning, I awoke to an occasional gurgle from Edgar, and a fully charged battery. This is the beginning of a beautiful relationship.

Hannah ;)

Home!

2011-07-07T22:09:00.002-05:00

I made it home last night!! Yesterday was very interesting... I had several issues with the wound and the woundVAC seal breaking beginning Tuesday night. Unfortunately, after several failed attempts at a repair, they had to completely change the whole dressing, foam and all again yesterday. Bummer and ouch - two days in a row! Then it started leaking again, so they had to come back and repair it again about half an hour later. Thankfully, there've been no problems since then, praise God!

Also, props to my nurse Lacy and the wound care nurse. I was really hurting after the dressing change, but they had discontinued all my medication orders. The wound care nurse talked to my nurse, who called the on-call doctor, who ordered a one-time dose of pain medicine to take the edge off. So thoughtful of them! Boy, am I gonna miss my central line and IV pain meds during future dressing changes. ;(

I got my portable WoundVAC set up. The guy brought it to me and taught me how it worked, then he handed my mom all these papers and a pen. I asked, "Do I need to sign those?"

He shook his head. "Um... are you 18?" He asked with a playful grin.

"I'm 23."

"Oh!! Well, you've aged gracefully!" Nice recovery. ;) And so I signed.

Getting out of the hospital was like pulling teeth! Discharge time is 11:00 am. I thought I was all ready to go! But then the wound care nurses had to patch up my dressing. Then another problem popped up, and the nurse had to call the doctor during surgery to get another med sent to the pharmacy. Then the WoundVAC guy had to come bring me the portable woundVAC. Then the nurse care coordinator had to come give me my paperwork for my dressing change appointment for Friday. Then the nurse had to pull my central line. Then I had to lay at a 30 degree angle for 30 minutes. Then I signed my discharge orders. Finally, it was time to go. "We'll just call transport. They'll come and get you in 15-20 minutes." Needless to say, it was rather trafficky by the time we got outta there!

Thankfully, we made it back home... but not before my mom stopped to buy me ice cream... she is the best! Not only does she stay awake with me on bad nights at the hospital, pack up my room when it's time to go and I'm not feeling up to helping much, cook me yummy food, and drive me home from the hospital.... but she gets me ice cream! ;)

I've just been taking it easy. I am very, very tired and sore. I'm having issues with my muscle pain sort of flaring up in a big way, but thankfully, I'm able to keep it under control for the most part with my meds. Another huge blessing is that I have been able to sleep, no problem. In fact, I fell asleep on the car ride home!

I am hoping to be able to return to my summer classes on Monday... we'll see how that goes! I usually crash for a couple of days after getting out of the hospital, then I'm much better. My professor emailed me today and indicated that I need to be ready to take a make up midterm on Monday! So I guess I'd better start studying.

Tomorrow is another dressing change, fun times. I will be having these on Mondays, Wednesdays and Fridays for the foreseeable future.

God is so good... He has brought me through yet another surgery and hospital stay. I am thankful for His goodness. Like I said in my previous post, while it's nice to celebrate victories (and believe me, I am celebrating being at home!), the war isn't over. Please don't stop praying for the Lord to work in my life through this circumstance, and that He'll give me opportunities to share the hope I have in Him.

Hannah ;)

Winning the Battle, Continuing the War

2011-07-05T20:38:00.004-05:00

Today I made progress towards home! I had another dressing change, and thankfully, it was not as bad this time. The wound is already showing signs of healing, and is a little bit smaller! Still have a very long way to go, but it's exciting to see positive progress. (Gross alert) They packed the wound a little differently this time - they actually want the tissue to attach to the packing this time. That way, when they pull out the packing, the new tissue will be torn. This will be much more painful for me, but is supposed to stimulate faster healing. And I'm all for faster healing, even if it means pain in the short term.

I also talked to a urologist (another gross alert)... Of course, I only can have embarrassing health problems, haha. I've continued to have bladder issues, and they were really bad over the weekend. I basically have a lot of trouble going to the bathroom. An ultrasound today showed that when I do go, I'm not able to actually empty out all the way. This may mean that the nerves down there are damaged from my past surgeries, or I may have scar tissue messing things up. We are going to trial a medicine and then decide whether or not to pursue further testing to figure out what exactly is going on. This isn't a new problem, and it's not at the level that is dangerous to my kidneys or anything, so I may well decide to do nothing, to be honest. ;)

Dr. Saturday thought I could go home tomorrow, most likely! I am very excited. I am a little worried about pain management at home. I'm definitely sore from the surgery, but it's not bad at all. The trouble is that my muscles are really hurting off and on, and I'm still having occasional twinges of the abdominal pain. When I've been on the strong meds here in the hospital, managing my chronic pain with the pills (which I took before I had surgery) is sometimes a challenge. I had such relief from pain for the first few days after surgery... it was so great. I wish it had stayed like that, but I guess God has other plans.

Someone said something to me about seeing the light at the end of the tunnel, since I'm going home soon. I don't really feel that way right now. I have several weeks ahead of me of painful dressing changes and dealing with the woundVAC, and, unless God chooses to heal me, life-long continued battles against painful autoimmune disease and the after-effects of the invasive surgeries I've been through. I'm not saying this because I'm overwhelmed or upset or depressed or worrying about the future. I just want to emphasize that I may have won this battle, but the war is not over.

It's just like in our Christian life. We are not to be worried, despite the suffering and trials we face, but we have to be constantly vigilant. Peter expresses it like this: "casting all your anxiety on Him, because He cares for you. Be of sober spirit, be on the alert. Your adversary, the devil, prowls about like a roaring lion, seeking someone to devour. But resist him, firm in your faith..." (I Peter 5:7-9a).

Why do we give the Lord our cares? Why do we resist the devil, and stand firm? Because of the fellowship we have with other suffering Christians:

"...knowing that the same experiences of suffering are being accomplished by your brethren who are in the world."(verse 9b).

We also stand firm because of God's great promise to us:

"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you."(verse 10).

What an amazing promise. Thank you all for the fellowship we share because of our common faith in Christ and our bond through suffering. The faith we share and the experiences we suffer through give me strength to keep fighting and to stand firm in my faith! Together we keep in mind the understanding of how temporary this is, and the help and hope God promises. What is our reaction to those promises? Peter says (and I echo):

"To Him be dominion forever and ever. Amen" (verse 11).

Hannah ;)

Happy Independence Day

2011-07-04T19:13:00.004-05:00

Last night ended up being "same song, second verse, little bit louder and a little bit worse" in the pain department. I felt TERRIBLE. Thankfully, my mom and dad came down to the hospital to hang out with me. I kept begging them to stay "just a little bit longer!" Finally, my mom decided to spend the night with me.

I was a mess. There is a delicate balance in managing pain, yet being coherent. Unfortunately, for the last two days, I've felt completely drugged, but still been in so much pain. Last night, I was super loopy and confused, in addition to hurting, so I felt much better with my mom and dad there! They are the best!

Thankfully, today my pain and nausea have been so much better! I haven't needed any medication for nausea since this morning. Still working on the pain, but it's been much better controlled today. I asked the doctor about using my fav pain med (toradol, an anti-inflammatory), but due to the bleeding risk (I have a large, open wound), it cannot be used. He told me to "keep pushing your pain button," so that's what I've been doing. Today has been a lot better, but I doubt I'll be going home tomorrow.

Today I also spoke with the dietitian about how to eat to help my wound heal! She did calculations based on my height, weight, diseases, and wound, and found I need a ridiculously high amount of protein in my diet. Protein is crucial to healing this wound. She gave me my protein requirements, and lists of high protein foods. My job is to eat! ;) Today I did a good job. The goal is to meet my body's protein requirements with "real" food, but if I'm not able to, I can look into protein powders and supplements.

I get a lovely view of fireworks from the comfort of my air-conditioned lobby! Be jealous, fellow Texans! No sweltering in the heat for me!

Hannah ;)

Father Knows Best

2011-07-03T16:47:00.002-05:00

Well, God has done it once again... turned my bad news from Friday into good news. I had my hopes up that I'd be home this weekend, and then it turned out that I have to stay in the hospital until Tuesday. I was so disappointed.

Yesterday evening, I started to have sharp pain in my lower abdomen. It would last just for a few seconds, then go away, so I just ignored it at first. I also started feeling really nauseous. I've been nauseated for a couple evenings in a row, so I didn't think much of that, either. Unfortunately, the pain and nausea escalated quite a bit - similar to the severe pain I had after my first two surgeries. I spent most of the night curled up in a ball, moaning. Thankfully, I had great nurses who took good care of me. I was just miserable despite everything, so it was very good that I'm still in the hospital!

Today I've just been laying low. I still feel pretty bad. They did a couple X rays to make sure I'm not obstructed (I told them I wasn't, but they still wanted to check it out), which were normal. We played around with dosages and timing of nausea medication, and I think we've hit on a good plan to keep things under better control. I still have my button for pain, which is helping to keep the pain under control for the most part.

Please pray that my body will straighten itself out! I am not sure what's going on, but it is very similar to the "mystery pain" I had after my first two surgeries (although, thankfully, this pain, while very bad, is less intense). Please pray that my doctors would have wisdom for the best way to help me ride out the pain. Please pray that I would not be frustrated or discouraged despite this setback.

Mainly, I am so thankful to God that I was here in the hospital when the pain hit. Despite already being hooked up to a pain med pump, it still took hours to get the pain under control. It would have been much worse if I'd been at home. Makes me wonder why I EVER doubt God's plan and purposes. He knows what He's doing, and I just need to learn to be content! Thankfully, "When we confess our sins, He is faithful and righteous to forgive us our sins and to cleanse us from all unrighteousness" (I John 1:9). It was neat to see such a clear reason for why God kept me here. My Heavenly Father knows the things that I need, and I can always trust Him.

Hannah ;)

Home! NOT.

2011-07-02T11:38:00.002-05:00

Recovery has continued to go smoothly, praise God!! Yesterday morning, Dr. Saturday came in and said, "You're doing well... what would you think about going home tomorrow?" I about jumped out of my bed with excitement. Alas, it was not to be. My woundVAC needs attention that cannot be had over the holiday weekend unless I'm in the hospital. So I will be here until Tuesday.

I was disappointed, but the weekend surgeon remarked that it's probably safer for me to hang out in the hospital for a few more days. I'm sure he's right, given my history.

My muscle pain has started to come back again, which is disappointing, but I still have really good meds here at the hospital, haha. ;)

Dr. Saturday asked if I wanted to switch from IV pain meds to pills yesterday. I said sure, then said, "Wait, are they messing with my woundVAC today?" He said, "Oh, yeah, they are... how 'bout you keep the PCA for today?" ;) So I had my little button for pain meds during the dressing change stuff. I sure hope the woundVAC stuff gets less painful as time goes on. I am not looking forward to repeating this three times a week for 6-8 weeks!

Other than that, there's really not much to report! Weekends (especially holiday weekends) are very quiet at the hospital, and not much happens! Boring is good, though...

Kendra is done with her first two days of chemo! Woo hoo! She did great, and is enjoying family time this weekend! Please continue to pray for Kendra and Stephen and their families!

I've been blessed with visitors and calls and messages and flowers from several friends! Thank you so much for all your love and support!

Hannah ;)

Post Op Update

2011-06-30T19:18:00.003-05:00

Many thanks to my mom for her lovely blog after my surgery on Tuesday! Like she said, God has been SO good! I had a few rough hours in recovery, but eventually they got my pain under control, and it has STAYED under control with minimal drugs! I didn't really sleep much the night I had surgery (couple stress doses of IV steroids will keep you up all night!), but I wasn't really in much pain. My muscle pain that's been giving me so much grief is SO much better than it normally is! You may recall that this pain was worse than my post op pain from my last surgery. So it's an incredible blessing to NOT be dealing with much of that pain!

All I can keep thinking is how good God is and how many people must be praying... this is the easiest time I've EVER had post op. On Thursday, I got up and moved around the room a bit... it's been really tough to get around because I am hooked up to SO many tubes and wires! But it's hard to keep me down when I am feeling okay!

As you recall, Dr. Saturday didn't close up my pelvis - he left it open. He said that it was full of infection and pus. So good thing we did the surgery, right? ;) He packed the wound with gauze. So, on Thursday afternoon, I met the wound care nurses. They pulled off the tape and started taking out the gauze. (WARNING: Slightly graphic..)

Have you ever seen those magic tricks where they pull a scarf out of their shirt, and the scarf just keeps coming out? That will give you an idea of what it was like. All told, they unpacked a cantaloupe sized pile of gauze from my pelvis. That felt... very strange. Then they stuffed a piece of foam (about the size of my foot) in the wound. They sealed it up with tape, and attached the little tube to the Wound VAC thing, which sucks the edges of the wound together. The process took an hour and a half. The wound is 10 cm long x 8 cm deep. My wound bled through a couple layers of towels and I was very thankful for my little button of dilaudid (pain medicine).

It was not fun. Thankfully, although the process was very painful, the wound actually feels better with the WoundVAC on and the pain faded pretty quickly, although from time to time, the "pulling" feeling gets pretty painful. Unfortunately, they have to repeat these foam and dressing exchanges three times a week... for the next 6-8 weeks. And I cannot get the wound area wet, either, so no baths or showers for 6-8 weeks, either. But I am confident that God will give me the strength to get through each dressing change (and give my family the grace to deal with me being smelly from no showering, haha. [Of course I am taking sponge baths]).

My stomach has done GREAT this time... my anesthesiologist, in addition to giving me the triple lumen subclavian line, did something a little different with the anesthesia, since I tend to have a lot of nausea and stuff for several days following my surgeries. Whether it's what he did or God's grace, or a combo, I was eating the day after surgery, and I've had very minimal nausea! And I'm actually hungry! Mom brought me Chick-Fil-A last night. ;)

My friend Kendra just finished her first day of chemo. It went well. She has another day tomorrow. Please pray for her and her family! She is pretty sore from her port placement still.

Yesterday afternoon and evening and today have been nice and low-key. I've been blessed with several very, very special visitors! And received so many nice calls and texts and messages... thank you to each one of you for your love, care, and support...

Hannah ;)

Surgery #4 Completed! (A Report From Mom)

2011-06-29T01:11:00.004-05:00

Hannah started the day with a few tests. No, not any scopes or blood tests. Not any poking or prodding. Microbiology tests. In Fort Worth at TCC. Specifically, two lab tests and one multiple choice test. It turns out that PA schools desire a 4 unit Microbiology class with lab and Hannah only had a 3 unit Microbio class. So, having enrolled in summer school at TCC, she made it to Fort Worth to take these tests - and had to leave before the lecture in order to get to the Dallas hospital in time for Pre-op check-in.

I guess she checked in at the proper time - and then sat around and waited a few hours. (Is that why she is called the Patient? Patiently waiting and waiting...)

Her Daddy and I arrived just as they took her to the Pre-op area. We got to sit with her. And wait patiently. She was a little jealous of the Sonic drinks we held, and our Weinberger Deli bag holding two of the most amazing sandwiches. We did not eat in front of her, since she had only a faint remembrance of food from the night before.

At 4:10 they ushered us out of the back halls of Pre-op and whisked Hannah off to surgery. Their plan was to give her some laughing gas and then add tubes and IV while she was not aware of what occurred. Evidently the laughing gas failed to knock her out. The anesthesiologist escalated the drugs of inhalant variety and Hannah doesn't remember anything else from the operating room (which is exactly what I prayed!).

Maybe an hour later - or an hour and a half, Dr. Saturday found us in the waiting room to give his report. He spoke of infection and said he had removed the parts inside that no longer belonged there. He said that he found it necessary to plan to use the vac-em-up that Hannah described in a previous blog and that it would aid in clearing up the infection. He was talking like Hannah would not be long in the hospital (his original estimate had been about only 4 days), but that the monitoring of the healing process and the vacuum cleaner could take place from home.

Well, evidently they were able to add quite a few tubes and such after the ramped-up laughing gas took effect. Instead of a PICC line, Hannah has a cool Central Line below her collar bone. The keeps the nurses from constantly needing to find a new vein when they have to draw blood, give IV fluids or administer meds. It also allows her to have this great Patient Controlled Analgesia (PCA) pump that lets her control her pain medication for now. When she finally made it to her room she told her Daddy and me that her pain was at a "4" (on a 10 point scale) which is on the low end of her typical day-to-day pain.

Here it is, 3 hours later, and she is still pretty comfortable. I attribute this to our loving Lord who has heard the prayers of His saints - Hannah's friends. I praise God for His mighty hand - His hand that is powerful enough to give Hannah's doctor wisdom and skill, His hand that eases her pain, and His hand that intervenes in the lives of His people. You can praise God too. He commands us to pray. He allows us to pray. He hears our prayers. He always does what is right. And, as we pray according to His will, we have the opportunity to praise Him for answering our prayers.

What a privilege to carry everything to God in prayer.

He is worthy to be praised.

Hannah asks you to pray for her friend, Kendra. Tomorrow the doctors will put in a port near her collar bone so she can receive chemotherapy. Pray for her to have peace in the midst of her situation - and to know the God of Peace in a way that brings everlasting peace.

Cathy (Mom)

Surgery Tomorrrow

2011-06-27T18:07:00.002-05:00

So...yeah, I have surgery tomorrow. It's scheduled for rather late in the day. I will try to get my mom to update as soon as she can after I get to a room. However, keep in mind that my body just does REALLY WEIRD things after surgery. It typically takes several hours for them to get me stable enough to get out of the PACU and to my room after surgery. Therefore, she may not be able to post until Wednesday.

Today I had a GOOD doctor's appointment! I had my appointment with Endo Doc, and it went very well! She was so surprised and happy that I've been able to taper down on steroids. I still have a ways to go. Once I taper down a few more times, we will be able to run the tests to see if my adrenal glands are "waking up" and re-learning how to function. Very encouraging after so many months of frustration. She also wants Dr. Saturday to do something a little different from his original plan with my steroids for surgery. She said she'd call him today to let him know her preferences.

I have been having a really tough time with muscle pain, so I've been taking quite a bit of pain medicine again. That means that it will be more difficult to control my pain after surgery, which has me worried.

Please pray that Endo Dr. and Dr. Saturday were able to agree on a plan for my steroids.

Pray that Dr. Saturday has a good night of sleep and can do well, even though I'm the last surgery of the day!

Please pray for surgery to do its job!

Please pray for my body to do well with the surgery - for no "surprises," a smooth recovery, complete healing, and good pain control.

Pray for comfort and peace for my whole family.

And mainly...please pray that God will be honored through this, and that I will lean completely on Him...not trust in the means of medicine and surgery and doctors and nurses, but in Him.

I am thankful for the support of friends and family as I continue to walk this path the Lord has set me on... I may not be up for phone conversations or visitors for a while, but I really, truly appreciate getting messages, comments, emails, texts, etc, even if I'm not able to respond!

Hannah ;)

Kendra

2011-06-24T11:49:00.005-05:00

So after my appointment with the surgeon, I called my dear friend, Kendra. We dove together for a year in college, and have remained exceptionally close over the years. She has been a faithful, feisty friend. She has more character packed in her barely 5 foot tall frame than anyone I know. Throughout all of my interesting health stuff, she's always known when I need gentle encouragement, and when I need to be told to "buck up." And in this case, I definitely needed to be told to buck up. ;)

Back when we were freshmen, one of our swimming teammates, Stephen, always seemed to hang around the diving well after he was done with practice. He finally asked Kendra out, and in 2010, they were married. They began their life together, excited for what the future would hold. Stephen is in school to become a physical therapist. Kendra just found out that she was accepted into a master's program, to begin in January 2012. Stephen came out here to Texas in May to complete an 8 week internship, while Kendra remained 1,000 miles away.

The three of us at a Tech football game, fall 2007:

Several months ago, Kendra began having some concerning GI issues. Just when she began to think she should get checked out by a doctor, her symptoms would improve, so naturally, for one reason or another, making an appointment would be postponed. She eventually saw a doctor and began having tests run in May. After numerous tests, confusion, and misdiagnosis, Kendra was officially diagnosed with cancer, Follicular Lymphoma. It is incurable, but treatable. Her life for the past several weeks has been a whirlwind of tests and scans and doctor's appointments, all while her husband was across the country.

Hence, one of the reasons for my sporadic posting lately. My health issues simply seem a bit unimportant in comparison. ;)

Anyways, I called Kendra, and told her about the horrible things they were going to do to me, and how I was not excited to have yet another surgery. Kendra politely listened, then said, "Hannah. Man up. You know you have to get this done. This has to happen, so you are going to go have this surgery and get through this."

Kendra has cancer. She is willing to do whatever it takes to get this in remission. It's not an option. She can choose to not like the chemo, but she is still going to go in and get infused every time, no matter what. I need a surgery - one surgery - to FIX a problem, hopefully for... forever. It's not a choice. So I'm going to do it, too, like my brave friend...

Please pray for Kendra, Stephen, and her doctors as they make choices about her treatment. I am confident that God will use this to bring them closer to Himself. Even in this, God is still good.

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:28

Me, Kendra and Stephen on the beach, New Year's Day, 2011:

Hannah ;)

The Plan (and a Delicious Beverage)

2011-06-22T22:25:00.017-05:00

I wasn't able to move up my appointment with Dr. Saturday. I called his MA, and, as usual... she was less than helpful. "I'm sure you'll be fine until your appointment if you keep taking the medicine Dr. Saturday gave you," she said in a most condescending tone. Maybe, except... the medicine he gave me was... an antacid. Pretty sure that will not cure my abscesses. ;) But thankfully, my tummy has been manageable, so I made it til my appointment today. Probably because of those antacids. ;)

Anyways, I am scheduled for surgery on Tuesday afternoon. Surgery and the aftermath sound a bit Draconian to me. Please be warned, this is a rather graphic/gross/inappropriate surgery, so my description will be a bit graphic, too. But in the interest of honesty (which is what Semi Colon has always been), here goes: He will cut around my anus, and remove my anus, what's left of my rectum, and the J pouch. In his words, "I'm going to do what should have been done when you had surgery in August."

Then he will clean out my pelvic cavity to get rid of the abscesses. After that, instead of sewing me up, he will pack from deep inside my pelvis all the way to where my anus used to me with foam. He will attach a WoundVAC to this foam (Stands for Vacuum Assisted Closure - the picture above is what the whole set-up looks like -you can see the black foam, tube, and machine. The picture below is a WoundVAC in action. The black foam is inside the wound, and the tube is attached to a the machine that pulls the edges of the wound together like a vacuum.). This will provide constant suction to the abscess area. Every week, they will remove

the foam and put in new foam. This is supposed to me so intensely painful that some people have to be sedated during these changes. The hope is that with each foam exchange, the edges of the abscess area will grow a little closer together. Eventually, I will heal all the way up, from the inside of my abdominal cavity to the ____ (area formerly know as my anus). The inside of my pelvis basically has still not healed from my surgery from last August, so he thinks that this is my best shot at ever healing up inside and getting rid of the abscesses once and for all.

After he explained this to me, Dr. Saturday said, "Looks like you don't like my plan. You never like my plans." Seems like his plans always involve drains exiting my body in bizarre, uncomfortable places! ;) This sounds like a not-fun process, and I am less than thrilled to carry around a suction machine attached to my pelvic cavity through where my anus used to be. Not sure how I will explain that one to people!

The hope is that this surgery will be the last chapter in the book of surgeries for my ulcerative colitis. I told Dr. Saturday, "After this, I really will have NO colon and NO rectum... so there's nothing you Colorectal surgeons can do to me anymore, right?" He chuckled and agreed. Wouldn't it be wonderful to put these surgeries behind me and move on with my life? As we were talking to the scheduler, she asked, "What kind of prep does Hannah need?" Dr. Saturday and I both burst out in giggles. "Well, um, there's nothin' attached down there," he finally said. "No prep needed."

I promised myself a tasty Starbucks drink (decaf java chip frappuchino, extra whipped cream. I know this is not coffee. It's a chocolate milkshake with a bit of coffee in it. I don't think of this as coffee, but I think it is delicious. Due to my health issues, I can't drink real coffee for numerous reasons). I frequent Starbucks infrequently, because, while delicious, everything is ridiculously overpriced, but I bribed myself with Starbucks to be good at the doctor's office. I sat quietly in one chair in the waiting room for 45 minutes and looked at the fish. I didn't open the drawers or cabinets in the exam room. I didn't mess with the EMR on the computer, although MA left the room computer up, showing his entire patient schedule with links to each of their health records (a MAJOR, MAJOR HIPPA violation). I was polite to everyone. So I got Starbucks. ;)

I tried to pay for my drink, and the barista said, "Not today. This is on the house." I must have stared at him dumbly, so he said, "It's free! Please enjoy!" God (and the barista) is so kind to send wonderful blessings like that! It completely made my day. Today God also provided a wonderful friend who, in a timely manner, gave me an attitude check... more on that later.

Hannah ;)

ER Run

2011-06-18T22:10:00.004-05:00

Look at yesterday's post about upcoming events in my life...

Unfortunately, last night I started having really bad tummy pain. Then all my muscles started hurting really bad. Nothing was helping... and I wound up in the ER. It took three hits of meds before the pain decreased. The doctor asked me if I wanted to be admitted for pain control, but I REALLY didn't want to.

I've been taking it easy today, because I just feel lousy. Thankfully, God has allowed me to stay on top of the pain today. Please pray that I can get in to see Dr. Saturday before my Wednesday appointment... seems like things are becoming more urgent.

Hannah ;)

Surgery #4

2011-06-17T16:21:00.000-05:00

I have another abscess, and I need more surgery.

That's the short story.

Here's the long story. Maybe I'm jaded, but miscommunication and failures really seem to be the rule (rather than the exception) of my experiences with medical personnel.

Well, after my less-than-satisfying visit with Dr. Saturday, where he denied that I had abscesses and wanted me to get tested for Crohn's again, I continued to have a fair amount of lower abdominal pain. Since I've gone through a few years of illness, I have quite a lot of intuition into when something is really wrong. I can feel that my body is having to work harder than it should; that something is not right, and the pain is getting worse. So after some encouragement from my mom, I went to see the family doc. She was quite concerned that the abscesses had recurred. So she ordered (surprise!) an MRI.

I got the MRI, and unfortunately, it showed an abscess. A new one.

I was frustrated beyond imagination. I don't understand why Dr. Saturday apparently changed his mind about getting the MRI. I am baffled that he didn't think I could have a recurrent abscess, despite the fact that I am having the exact same symptoms I had before my April surgery. Since he wouldn't listen, I had to sort of go behind his back to get the MRI that I knew I needed.

Family doc called Dr. Saturday. I got a call from family doc's nurse saying that they talked, and the surgeon said I need surgery, and he'd call me.

I didn't hear from him that day, so yesterday, I called his office. His MA (stands for Misinformation Assistant, I mean, Medical Assistant) eventually called me back. She said that Dr. Saturday wanted to try to drain the abscess in the office, and she would schedule me for that. This sounded like a horrible idea to me. I tried to get more details about how exactly he would do this (as the last two times I've had it drained, it required CT guidance to get the needle in deep enough, or general anesthesia, so I have NO idea how it would be possible to drain it in the office), but she didn't know anything at all. So she said that I should call on Friday to try to talk to Dr. Saturday.

I had some pretty obvious concerns, one being that Dr. Saturday didn't listen to me when I said something was wrong, despite my labs and symptoms pointing towards another abscess. It seems like every doctor I have listens to me initially... then after a while, they seem to stop listening. And it's not like I'm making this stuff up. My other concern was this: we can't just keep draining the abscesses every so often. We need to fix the source.

So, thankfully, Dr. Saturday called me today (I didn't even have to call!). He said he needs to see me (on Wednesday) so that we can discuss options. He said I have three choices:

1. Go to interventional Radiology (IR) and get the abscess drained with CT guidance (this was the procedure I had in September).

2. Have a repeat of the April surgery - go in, clean out the abscess, and place a drain, or,

3. Remove the part of my J pouch and (sorry, worst phrase ever) anal canal that did not get removed in August, as well as clean out the abscess. This is the more permanent solution, and his recommendation.

So... MA was greatly mistaken about an in-office procedure! ;) Much as I do NOT want another surgery of any kind, I have to agree with Dr. Saturday that option #3 is the best. If we did option 1 or 2, in a few months, the abscesses would likely re-accumulate, and we'd be right back where we started. All three of the surgeons I talked to in March suggested doing the more conservative surgery (like I had in April) first. If that did not resolve the infections collecting in my pelvis, they would recommend option #3. Please be praying for the timing of the surgery... my health insurance runs out on July 15, so I need to be out of the hospital by then, hopefully! And we all know how long I typically end up being in the hospital!

Dr. Saturday didn't have any explanation or apology or anything when I asked him why I had to go to another doctor to get the MRI done. He just laughed when I asked him about it. So frustrating! I just wish that he would actually listen to me...

Hannah ;)

Solid Rock

2011-06-13T21:29:00.003-05:00

"What is certain?"

In life, we hold quite firmly to many assumptions about what is certain. For example, when you get up, you believe, as you swing your legs over the bed, that your legs will hold you up, and that the floor beneath you will not shift. You automatically assume that your car will start up, that the sun will rise, that your shower will have hot water, and that your radio station will play the same genre of music as always. As you eat breakfast, you take it for granted that that your body, without any awareness on your part, will process and assimilate the food you take in. When you get to work, you are fairly sure it will be business as usual; you're not expecting a pink slip on your desk.

You make plans for the future, for years in advance. You think about next year, 5 years ahead, ten years from now.

As humans, we love and crave patterns and routines. It's part of the image of God that He stamped on our souls. When Adam sinned, God's image became twisted and marred. We end up trusting in what we think is certain, worshipping that order and routine, our plans and assumptions. We want things to go the way we've planned them - and our plans don't include illness, financial difficulty, natural disasters, relationship problems, or death.

However, God has a way of turning those plans upside down. God can (and often does) change what we take for granted at any moment. We are surprised, blindsided, shocked, or irritated when this happens. What you'd always thought was certain is really not so secure anymore. It's as if the ground is giving way underneath you. It's like the roof is being taken off your home. It's all unsure, and seems so fragile - in a moment, everything you always counted on could vanish, be gone, destroyed.

When things are uncertain, where does your faith rest? If your faith, consciously or unconsciously, is in the ground you walk on, in the possessions you own, in the job you have, in the body your soul inhabits, in the people who surround you, then you will find yourself continually disappointed, discouraged, and distraught when things change.

But if your faith is in Jesus Christ, God who became man (John 1:14), who, by His life explained to us what God is like (John 1:18), who became sin for us so that we could be made right with God (II Cor 5:21), who died for us and now lives and intercedes for us (Romans 8:34), then, when things change, you will not be moved.

You may be afflicted, but you will not be crushed. You may be perplexed, but you need not despair, persecuted, but not forsaken, struck down, but never destroyed (II Cor 4:8-9). Indeed, we will overwhelmingly conquer through Jesus, for there is nothing that can separate us from His love (Romans 8:37-39).

A man named Edward Mote who lived 150 years ago said it much more poetically than I can when he penned these words:

"My hope is built on nothing less than Jesus' blood and righteousness,

I dare not trust the sweetest frame, but wholly lean on Jesus' name.

"When darkness veils His lovely face, I rest on His unchanging grace,

In every high and stormy gale, my anchor holds within the veil.

"His oath, His covenant, His blood, support me in the whelming flood,

When all around my soul gives way, He then is all my hope and stay.

"On Christ, the Solid Rock, I stand, all other ground is sinking sand,

All other ground is sinking sand."

In times of uncertainty, when the ground under us gives way, when we see the fragility of life, the temporal nature of this world, we ask, "What is certain?" The answer: God alone. We must cling tightly to Him, and our faith must always rest in Him alone. Everything else in our life is temporary, a vapor, shifting shadows, but God will never change. Cling to the Solid Rock, and not in sinking sand.

Hannah ;)

Dr. Saturday

2011-06-09T16:49:00.003-05:00

Well, as you know, I've been having tummy issues - I am basically feeling the same way I was before my April surgery - nauseated, small appetite, lower abdominal pain, just feeling "off." I've also been having quite a bit of pain when I pee (and no, it's not a UTI...). To review: Because of these symptoms, Dr. Saturday ordered a sonogram three weeks ago, and some more labs. The sonogram was inconclusive -essentially, it's just not a good test for looking for abscesses. He decided that if my labs were still off, he'd have me get an MRI to further check things out. I got labs with Rheumy, and was supposed to call Dr. Saturday with the results. They came back with my white count even higher. I called the office, but Dr. Saturday was out of town for a few weeks. The nurse told me that he just wanted me to come in for an office visit, and she'd call me to schedule it. I never received a call. To their credit, however, when I called on Tuesday afternoon saying I wasn't feeling well, they gave me an appointment for 9:00 on Wednesday morning.

So Wednesday I go in and report how I'm feeling, anticipating that he'd send me to get the MRI. I'm feeling exactly the way I was before surgery, so it makes since to me to think that I might be having the same problem again. He disagrees, since I'm not having a fever and the ultrasound didn't show obvious abscesses. Unfortunately, that was what everyone thought all winter and spring when my ultrasounds were normal and I was fever-free. Finally, an MRI in February did show the abscesses, despite the normal ultrasounds. I'm worried that that's what's going on again, but Dr. Saturday doesn't think so.

Dr. Saturday thinks that I have Crohn's disease, and my symptoms are from that. He wants me to get an upper GI series done to investigate that. Well... but... I had this test done last summer, and it was fine, I don't think that my pain is INSIDE my intestines, I don't want that much radiation (this test involves quite a bit) and mainly, for several very good reasons, I just don't think that I actually have Crohn's disease.

We also discussed doing this super cool (radiation-free) test called capsule endoscopy (you swallow a camera, and it takes thousands of pictures of your guts and transmits them back to the doctor!). It would be very useful in determining if I am disease-free or if I have Crohn's or some residual inflammation/ulcers on the inside of my intestines. Unfortunately, with my frequent small bowel obstruction issues, this could be very dangerous. The camera has a high chance of getting stuck, and would require emergency surgery to remove! So we ix-nayed that test!

So we are sort of at a stalemate. I won't agree to the test, but he can't really decide what to do without it. I really just think that the abscesses are back, and we need to do a better test to make sure. Please pray for wisdom as I don't know what to do, but I know I just don't feel quite right.

He did provide insight into the bladder stuff. Apparently when there is inflammation, your tissues get "sticky." My absceses were down in my pelvis surrounding all my pelvic organs, including my bladder. Since I have no colon, my remaining intestines kind of fall down into my pelvis. With all that inflammation, the organs start sticking together, called adhesions. He thinks that I have intestines adhering to my bladder, so when it stretches or shrinks, it pulls on stuff, causing pain. I am also (gross alert) still having to go to the bathroom to "poop" stuff out of my rear end. He said that this will continue forever, since they opened me up down there to drain the infection. Fun times.

Finally, my brother, Andrew, wins above and beyond kindness awards... he sprained his ankle on Monday. I was just hanging out, and he was elevating his ankle. Suddenly, I started having this intense salt craving... this happens to me a lot, especially when I mess with my steroids or when my body is stressed. I was also feeling a little lightheaded, and so I knew that something salty would make me feel better. I was going in to check on him and see if he needed anything at the store. Unfortunately, I had stood up too fast and about blacked out on his floor. I was super dizzy and kinda sweaty. He very kindly hobbled to the store (and Sonic!) and brought me salty snacks and a Sonic slushy... what a good brother! Please pray for his poor ankle to heal up!

Hannah ;)

Trending Better

2011-06-05T22:31:00.001-05:00

I apologize for the lack of posts of late. A lot of stuff is going on in life right now, and I will let you in on it at some point, but not today. ;)

Health-wise... overall things have been "trending better," as my mom puts it! There is some very exciting news: I cut down on steroids on May 25, and I've been (drumroll, please) FINE! This is truly amazing and wonderful and unbelievable and completely an act of God. We thought that my adrenals were completely shut down and not recovering at all. The fact that I've been able to taper and tolerate the change indicates that I have at least SOME adrenal function coming back at last! There are not words adequate to express my happiness about this taper! Praise God.

I also have been able to cut back on numerous other medications! After a very frustrating Rheumy appointment, we decided to drop off Plaquenil, a medicine that is supposed to help the arthritis and general autoimmune stuff. It has not seemed to make any difference in the number of flares I've had or in my overall well-being, so I stopped it. I have also been dropping the dosages on my sleep aid med, a muscle spasm med, and my pain meds! My pain overall has been better, although since Friday it's been a bit worse. But really, I can't complain! I really feel like I'm making progress, and the less meds, the better! ;) I had a couple days this week where my pain was... not really that big of a deal! I took just a little bit of pain meds, and that kept it under control and I felt good! Wow! I can't even remember how long it's been since I wasn't hurting super bad! Those were AWESOME days, and I'm sure hoping that more of them are around the corner for me.

I saw Dr. Pain (aka Jack Black) on one of those awesome days. He sent in the nurse who reported that he asked, "Was that Hannah? Did you see her walk? She was walking normally! She looks so good! She looks like she feels good. Does she feel good? Go find out!" ;) Yup, I felt good! I guess it showed. I have been hurting SO BAD the last several times I've been in, so I probably usually look terrible. He sounded JUST like Jack Black as he said, "Whatever you're doing, keep doing it! Do it twice as much!" He thinks I'm going to get all better and be fine. I hope he's right! ;) He about shattered my rib cage because he hugged me so hard, and told me I made his day.

My stomach is not doing so hot. It is acting up - hurting where the abscesses were, and I've been nauseated and losing weight again. Bummer. I am also having this weird thing where my heart feels like it is going really fast all the time - could be from steroids, but I think it's more likely from infection. Dr. Saturday has been out of town for the past few weeks, so nothing has really happened on that front. I also had a pretty bad obstruction on Friday night - Squirt quit squirting for several hours, which is quite uncomfortable for me. My body was trying to move stuff along, but it couldn't. This is theoretically from scar tissue or adhesions. It happens pretty often, but usually doesn't get as bad as it did on Friday.

So there you have it - overall, I'm doing so much better, although I still have some issues going on. I like this upward trend, and I pray it continues...

Also, just a little note to say thank you to all of you who follow what's going on in my life. Your prayers and encouragement really mean so much to me. I was just thinking today about my last hospital stay and surgery. I usually HATE being in the hospital, and I feel bored and lonely, and I'm usually in a lot of pain and feel awful. This last hospital stay was simply amazing. I didn't feel super terrible most of the time, even though the doctors thought I was supposed to (I surprised them), and God provided the most amazing stream of visitors, room decorations, notes, calls, and encouragement. God is so good, all the time. I am so blessed and spoiled by His kindness and by your kindness to me and my family! I was an undeserving sinner, and He died for me, saved me, gave me new life and hope, AND sends me wonderful blessings continually.

Hannah ;)

Update

2011-05-26T20:37:00.003-05:00

Julia is doing better. She went to the hospital in a lot of pain, but didn't need to have a scope. She is back in school and doing well now, thank God! ;)

Everything is okay. My ultrasound was more or less inconclusive, so we did more labs. They came back with my white count even higher, almost double what it was when I went home from the hospital. So I'll most likely be getting an MRI soon to see if I have more abscesses or something. I had an appointment with Rheumy, which was frustrating but not really significant. I'm feeling okay, pretty much holding steady.

Everyone asks me what it means when I go for a while without posting anything on the blog... if it's good or bad or what. I honestly don't know. All I know is that right now I just need to take a bit of a break from blogging about my health issues... they simply don't seem important or worth complaining about at the moment. ;)

Hannah ;)

Pray for Julia! (and two hours of ultrasound)

2011-05-18T21:39:00.000-05:00

Please pray for my friend Julia!! She is feeling sick and is going to the hospital for a scope of her J pouch to see if she has pouchitis! Please pray for her to get well soon and have the strength to face this test. Pray that she will keep her eyes fixed on Jesus!

I've been feeling a bit better this week so far! I am working on getting back down to a more reasonable dosage of pain meds while still being relatively comfortable. I'm being careful to get lots of sleep and naps aplenty, and I think that's helping me to deal with pain better. I'm also just adjusting my energy expectations - I just am wiped out and need a ton of rest - the more naps, the better! In happy news, my appetite has completely returned - I am eating like a fat kid! And I haven't touched my nausea medication for days! I eat and (most of the time) I don't feel sick! I'm enjoying being able to enjoy food again. Also, I can no longer see my ribs, so that's a good thing, too. That being said, I'm still hurting a lot in general and having that lower abdominal pain as well as bladder issues. But it's not stopping me from eating! ;)

Dr. Saturday's office was in the doghouse, but yesterday they redeemed themselves by FINALLY returning my calls and scheduling me for an ultrasound. The ONLY day I could do it was today, and they got me an appointment today at an imaging center about 2 miles from my house. Nice! The plan was for me to get the ultrasound, and then come see Dr. Saturday immediately afterwards. Unfortunately, the plan did not take into consideration that the ultrasound might take TWO HOURS. So, I missed my appointment, and Dr. Saturday was going into surgery, so they said he'd call me. Actually, they asked me if I would drive the disc over to them, then he'd call me, but I thought it made a whole lot more sense for me to NOT drive all the way over there to hand them a disc when they will get it electronically by tonight.

Thankfully, the ultrasound (unofficially) didn't show any huge, major issues!! No giant abscesses jumping out or anything. Of course, it (unofficially) showed that I have huge cysts on my ovaries, as always, which makes everyone freak out, but it's just my normal. This is like the 5th or so test that has shown them. They never turn out to be anything bad, and they always go away on their own without a problem. She did see something on my right side that she thought might be an abscess, but I doubt it... I only hurt on the other side! We'll see what the actual report says and what the doctor thinks.

Today, about an hour in to the ultrasound, I had this moment of realization: this is way weird. I'm alone in a room with a stranger, who came in, dimmed the lights, told me to take off my clothes, and she's moving tools covered in gel all over my body. Slightly uncomfortable. Especially so because this technician had this really smooth, soothing (read: slightly creepy) voice. Just an observation. ;) No, really, she was super nice. I was not supposed to eat today for the test (not really sure why...) and I was pretty hungry by the time she was done. She offered me her bag of chips on the way out! ;) I guess she could see that my tummy was completely empty! But I didn't take the chips. Even though we had two hours of bonding time, I still didn't feel like we were on the level where we could share food. ;)

I feel like I'm back in that nebulous zone of this spring - ultrasound doesn't show anything, but I still feel kinda crummy and my labs show infection. The infection was smoldering enough that no one wanted to treat it, but concerning enough that Rheumy couldn't treat my arthritis. And... Monday is my next Rheumy appointment. And since my white count is elevated, I doubt we can make any changes to help the arthritis go into remission. Oh well. "Nebulous" is MUCH better than "surgery needed urgently" because of some huge problem! God is good.

Please pray for me as I continue to walk by faith! Also, I am quitting my job at the end of the month (this has been planned for a few months, so it's not sudden). I was HOPING to have something lined up to start, but I am still waiting. God has graciously provided two fantastic possibilities. I just have to be patient and wait... and then decide which one makes more sense with my health and stamina issues. One's a lot of hours (maybe more than I can handle), but offers amazing health benefits. The other one is a really fun, wonderful situation with fewer hours (maybe too few for financial survival), but no health benefits. Hmm...

Hannah ;)

By Faith

2011-05-15T22:40:00.003-05:00

So, I had postponed writing this post... I was waiting to have a better attitude before I wrote this (hence the 10 day gap in posts!) and God has finally provided that. Better put, my attitude has finally come around to a more godly perspective.

Today in church, we learned a song from Hebrews 11. Hebrews 11 is this amazing chapter that talks about many great men and women who lived by faith in God. Some of them saw and accomplished amazing, wonderful things - people raised from the dead, kingdoms conquered, victories won. And then others... others were tortured, afflicted, and never received the promises of God in this life. But they lived by faith.

How were these great men and women able to endure what they endured and still be faithful to God? It's because they weren't focused on this life. They were looking forward to what God has promised. They considered themselves as strangers on the earth ( verse 13). The world wasn't their home; in fact, the world was not worthy of these men and women (verse 38). They were seeking God. They were seeking heaven (verse 16). That perspective - that long distance, far sighted vision - the assurance of things hoped for, the conviction of things not seen (verse 1) - that faith - allowed them to live a life that honored God in the midst of tragic and horrendous circumstances.

I have been more than a little bit down and frustrated and NOT walking by faith. My stomach has been hurting more and more. I went to see Dr. Saturday on Monday, and by Wednesday morning, he was on the phone with me because my white count has jumped up again. That plus my increased pain warrants further investigation. It is likely that I will need MORE surgery. This week, I'm going to go in for an ultrasound (if his schedulers ever quit playing phone tag with me) and an appointment with Dr. Saturday to decide where we go from here. I've been exhausted and in pain. On top of all that, I'm trying to work and study for the MCAT (I'm taking it in a month!) and investigate health insurance options and search for new jobs. But I just have no energy.

I didn't understand why I can't get better. It seems, at times, like pointless suffering. Why, at age 23, do I have innumerable doctors, chronic pain, an ostomy (which is having strange issues that would require another surgery to temporarily fix), joints that don't work, adrenal glands that don't work, guts that hurt, and no real solutions or end in sight?

My dear friend, Kendra, has recently found out that she has a large (thankfully) benign mass in her intestines (I probably gave it to her... what are the odds?). Her husband, Stephen, is 1,000 miles away, unable to be with her, and she needs surgery. It's a hard, hard situation.

When you look at life, at the world, and you consider the poverty and natural disasters and suffering and oppression and sickness and death and all the horribleness of life, it is so easy to get bogged down. In my own life, if I look at my health situation and imagine living the rest of my life with these problems and this pain, it zaps my desire to keep living. But that is NOT the perspective that God has called me to have. That is NOT a life of faith.

My life is not about this earth. It's not about what happens to me here. I am to live in anticipation of the promises of God. If I were seeking something here, then there really isn't much reason for me to keep living. What do I have to look forward to? A life of surgeries, sickness, and pain? But I am looking forward to a heavenly kingdom. My job isn't to change my situation. It's to live by faith in God without regard to my circumstances. Why? "And without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who seek Him." (verse 6). I'm to live with my eyes on the future, to what God has promised, to what He has prepared, to heaven.

Please join me in considering your own life - are you walking by faith, or are you caught up in what this life has to offer? Moses chose to endure ill-treatment with the people of God rather than enjoy the passing pleasures of sin. He was looking for Christ, to the ultimate reward of eternal life (verses 24-26). May we do the same, and walk by faith each day. Then God will not be ashamed to be called our God (verse 16).

(And please pray for Kendra and Stephen).

Hannah ;)

She's Baaaaack!

2011-05-05T21:22:00.003-05:00

This week has been good so far! I've been fighting back this darn flu bug, which has left me voiceless and coughing and with a sore throat, but I feel good otherwise! My pain was bad yesterday, but overall it has been manageable and tremendously better than it was, which is AMAZING, if I hadn't mentioned that.

The only thing that's worrying me a bit is my tummy... it is hurting again where the abscesses were. Dr. Saturday told me I could expect to have pain there for quite a while. But the pain had totally gone away, and now it's back. Hm.... hopefully that doesn't mean anything bad. I'm also having intermittent pain and nausea like I did in the summer - from obstructions, I think. Squirt (my ileostomy, which pretty much continuously squirts) stops squirting, my belly hurts and I get nauseated... then things finally start moving again and I feel better. It's a pain. I can't figure out why it's happening, but I'd like it to stop! ;)

I feel so blessed to be able to be back at work (working a reduced schedule). I feel like a celebrity, actually! Everyone has gone over the top in welcoming me back and making sure I'm okay and everything! One of the guys I work for came up and hugged me while I was having a snack. "It's so good to see you EATING again," he said. They are so sweet. It has been great to be back, but it is exhausting. I am so tired by the end of the day! I hope that my stamina will come back once I get completely over the flu. But it feels so good to be on the job. I really missed working!

I returned to the Pain Dr. today. The nurses were both happy that I was looking a lot less miserable than I did last week. I pretty much wanted to curl up and die that day. I actually didn't see Jack Black; I saw one of his associates instead, who is very nice and gave me tips for med school. My pain is so much better! I told him. What did you do differently? He asked. Nothing! I said. What changed? He asked. I don't know, I replied. It's a mystery... I guess Dr. Pain was probably right with his theory about my body getting rid of the toxins and stuff. Anyways, I am just glad that it's better! So thankful! I'm starting to feel like myself again.

Today marks one month since my surgery! It's been a month of recovery, definitely. I am very thankful for how well things have gone. No ICU, no home TPN or antibiotics, the surgery did what it was supposed to do, I am actually feeling BETTER than I did before surgery, and I am blessed with doctors who are very responsive when I have concerns or problems!

Hannah ;)

Right Before Dawn

2011-05-02T20:51:00.003-05:00

When I went to see Dr Pain last week, I felt AWFUL. SO much pain, and NOTHING was helping. He told me that the darkest hour was right before dawn, and I told him, "Yeah, right." ;) I'm a nice patient. Actually, I asked if he could anesthetize me until morning broke.

Well, I guess he was right. The patch held me over and my pain has come down, even now that the patch has worn off. Oh, yeah, I also got this HORRIBLE flu bug on Friday - like sore throat, cough, stuffy nose, fever, chills, aches, and vomiting. I haven't been so sick from something that's not autoimmune in years! The concern with me is always dehydration and keeping down the steroids... Thankfully, it quickly passed, except for the fact that I have no voice at all! Everyone thinks that's funny!

God is so, so good. I am so incredibly thankful that I am not wanting to crawl out of my skin from pain anymore. My pain is still above my "baseline," but it is SO much better. And He resurrected me in order to have a wonderful weekend filled with friends from far and near. And I got to go back to work today. Last night, I was laying in bed awake just filled with thankfulness. Last Monday night, I was writhing in pain at the hospital... today I went to work. Thank you, Jesus... There is nothing better than being in awful pain and then having relief.

Hannah ;)

A Difficult Patient

2011-04-28T19:39:00.003-05:00

Yesterday I went to see Dr. Saturday. It was good news - my labs from the ER on Monday night showed a decrease in my white blood cell count. He was concerned about the abscesses coming back or something, but since the labs are improved, he thinks my stomach is on the right track. We both think that the increase last week could be due to increased inflammation from my current joint/muscle pain flare up. There is still a possibility that I will need surgery at some point to remove the last bit of J pouch. This could be in a month, could be in 5 years - but he thinks it's pretty possible that another infection or abscess could develop because of the tissue that's still there, necessitating another surgery. I told him that if this happens, I'm hoping for BEFORE my insurance runs out in July! ;) I'd really just like to move on with my life and not walk around feeling like a ticking time bomb is in my belly! ;)

He was very concerned about my increased pain. He mentioned something about me being a difficult patient... not that I'm obnoxious (well, okay, maybe a little bit), but my body is... not normal. Since Friday, my stomach has been okay! That's great! But my joint and muscle pain has been RIDICULOUSLY bad. Just unbearable. He wanted me to get in with a new rheumatologist, but of course it would be weeks and weeks before I could see them! I have an appointment with my current Rheumatologist in less than a month, so I'll just keep that appointment. I feel (and Dr. Saturday agrees) that Rheumy has been less than helpful so far - when I have problems, she just says that I'm already on "optimal medical therapy" and asks if I'm depressed and if I've talked to a psychologist. If the psychologist could reduce my joint inflammation, I'd be happy to talk to them! ;) Not. Helpful.

I've been on a medicine for over a year now that's supposed to reduce inflammation and autoimmune activity. It takes 4-6 months to kick in, so all summer when I was hurting, we hoped I needed to just wait longer for it to work. It definitely should have kicked in by now... and I'm still having flare ups and lots of pain. At my last appointment, I asked her if I could come off it, since I don't think it's working. She told me, "I'm sure it's helping more than you think, and it's not giving you side effects, so you might as well stay on it." I don't know if I should just stay on a med that isn't helping just because it is safe... I know I am a difficult patient. Due to my other problems, allergies, previous therapies, and elevated white count, she is very limited as far as treatment options. I don't know what I expect her to do, but I wish she could do something besides suggest that I'm just depressed.

My pain has still been really, really bad. Today has been better... I pulled out a leftover pain patch, which I'm probably not supposed to do, but it is helping tremendously and I haven't needed any pain pills at all on top of the patch. Plus, God allowed me to SLEEP last night. Please pray that God will give me relief from the pain! And thank Him that my white count has come DOWN! Woo hoo! That is such good news! I also got a massage today! It felt goooood. If I were rich and famous, I'd get one every week!

At the hospital, I got to see my friend Patt, who is one week out from yet another surgery for her Crohn's disease. Her recovery is going very, very slowly, and she fell on Tuesday, so she is very sore. She has been in the hospital for weeks and weeks at this point, and that is TOUGH! Please pray for encouragement for Patt's soul and for healing of her body!

Hannah ;)

"I'm in an ambulance/ I took, I took the worst of the blow/ send me a redeemer..."

2011-04-26T17:37:00.002-05:00

My pain has continued to get worse. I just haven't been able to get any relief, despite stretching, heating pad, and all my medications. Since Thursday night, I hadn't been able to sleep for more than 3 consecutive hours due to the pain. By last night, I hit a wall and totally lost it. I was in so much pain.

I ended up taking an ambulance to the hospital... the decision was made to go to the hospital where I had my surgery, which is sort of far away, and I could not imagine bumping around in the car for that long. Hence, the ambulance. In retrospect, it would have been much better to just go to the hospital locally, but oh well. I can now check "ambulance ride" of my "sick person bingo" card. ;)

Anyways, they juiced me up with pain meds for a while and sent me home. It was kind of sad: while the meds helped, they did not take away the pain. Both my parents were fantastic advocates for me last night, and I am tremendously thankful for them.

I called Dr. Pain this morning, because I figured we should probably talk, and his wonderful nurse said that he would see me this afternoon. His other nurse confided in me that he's told the office that if I ever call, he will see me that day, no matter what. Have I mentioned that they are awesome?

His nurse gave me a shot of Toradol, my favorite medicine ever. Dr. Pain didn't really want to make any changes to my meds right now. Kind of frustrating, but if the IV meds didn't really help, it's not like upping my pills will do a lot of good. He continues to hope that this pain is just my body basically detoxing from the abscesses - all those inflammatory chemicals and yucky stuff from the infection. All that junk was walled off by my body for months. Since surgery, it's opened up and my body is healing, so while my tummy is getting all cleaned out, I'll have more pain as all those toxins circulate and get broken down.

Thankfully, the Toradol helped quite a bit (and he had me wait around for almost an hour to make sure I was feeling better). He told me that I can come in every Tuesday and Thursday for a week or two and just get a shot if it helps. I may take him up on that offer... that stuff is magical for me!

Please pray for relief from pain and for sleep! And please pray that I keep my perspective in the proper place. The last several days have been so awful and my soul is definitely getting dragged down.

Hannah ;)

Bad into Good

2011-04-22T13:35:00.002-05:00

Yesterday I went to see Dr. Pain. I was scheduled to see him next week, but I was having so much pain and popping so many pills without relief that I was getting concerned. So he squeezed me in yesterday, because he and his office are awesome like that. ;)

The majority of my pain right now is in my muscles. Yes, my joints are flaring, and yes, I still have pain from the inflammation in my tummy, but it is nowhere near as bad as the muscle pain. To put it in perspective... when I was in the recovery unit for several hours after surgery, they kept offering me pain meds, but the pain from the surgery was nothing compared to how bad my muscles were hurting. So I kept saying no to the pain meds, because the surgical pain was not that bad. Finally, I started almost crying because I was hurting so much. In my anesthetized state, I asked the nurse if I was cheating if I took the meds for other pain. She looked at me like I was nuts (or under the influence of the anesthesia), and said, "poor baby, we've hardly given you anything. Here's the good stuff," and started pushing the meds in my line. ;) Anyways, all that to say that my muscles have been hurting pretty badly.

So Dr. Pain wanted to give me... Valium. "It's the best muscle relaxant known to man," he said. I said no thank you. I'm already on narcotics, don't really want to add benzodiazepines to the list of addictions. ;) He tried to talk me into it, but I was not swayed. So he gave me some other muscle relaxant to try. He also told me to experiment with some different combinations of the meds I have to see if I can get more relief. And he told me that I'm not taking too many of the meds (which is always my concern).

He also said that he would almost expect me to have more pain right now. The abscess is finally drained, so all the infection and toxins and inflammatory molecules and stuff are getting cleaned out of my system. So they are going to circulate around and cause more pain and inflammation until everything is totally healed. In a way, the pain might be a good thing! That was encouraging! We both feel like I'm on the right track, just have to get the pain under control so I can function.

I took the muscle relaxant yesterday evening before dinner, and I dissolved into a puddle of goo within half an hour. Yeah, this one goes on the list of meds to take RIGHT before you get in bed. But I am happy to report that it definitely helped the pain! Although last night I was too melted to really feel much of anything. Which was okay - I'd rather feel like that than deal with the amount of pain I've been having!

This morning, my phone rang, and my heart sort of sank when I saw it was Dr. Saturday calling. My labs came back, and my white count has jumped back up again. It's not super high, but it is definitely elevated. He was concerned. So I have to come back to see him on Wednesday to do more labs and have him check me out. I dunno if it is mental or what, but my stomach is feeling worse now... I'm trying to not worry, but I just have this feeling that we are going to start this whole mess again - more labs, scans, antibiotics, procedures, surgery... The positive thing in all this, my dad pointed out, is the prompt and excellent care. My labs came back this morning, and within an hour, the doctor personally called me to let me know, check on me, and set up a new appointment. That is remarkable, and quite a contrast to many of the other doctors I've had. So I'm thankful!

On Easter, we remember how God turned a terrible thing - the unjust, horrific death of His perfect Son - into the greatest good imaginable - salvation for all who repent and believe. In my own life, I celebrate how, on a smaller scale, God turns "bad" things into good - that my increased pain may mean healing, that my labs are bad, but my doctor is on top of things and I'm not falling through the cracks.

Please keep my friend, Hollye and Patt, who are recovering from surgery, in your prayers!

Hannah ;)

Post Op Visit

2011-04-20T20:05:00.003-05:00

Today I went back to see Dr. Saturday. Today we were to "discuss" my infamous drainage tube, which resides in a surgically created orifice in my backside. To set the tone, I wore my chocolate bunnies shirt. Dr. Saturday thought it was hilarious and laughed for quite a while.

So far, he is pleased that I have had no fevers, less nausea, and have continued with the lower dose of steroids. I'm pleased, too! ;) He told me I looked "somewhat better" than I did at the hospital. Thanks? ;)

I've been having some issues with Squirt for several weeks - he's sticking out more than he should, so it causes some problems. It sticks out enough that it's uncomfortable and harder to conceal. And Squirt catches on the edge of the flange on the bag, so the intestine gets raw and bloody. It's not nearly as extreme as my problems with the "old Squirt" - before surgery #2, he used to prolapse really badly - like 5 or 6 inches of intestine would stick out of my belly and I'd have to go lay down to push it back in. And as soon as I stood up, my guts would start falling out of my belly again. It was very, very uncomfortable and psychologically disturbing to have to literally push your guts back inside! All that to say that this is mild, comparatively. But if Squirt is here forever, it might as well be comfortable! Dr. Saturday told me that it could be fixed with a small procedure. He said we could possibly do it even in the office. I would like to get that done at some point soon (like before I lose my health insurance in July!).

Then, he said, "Let's get that tube out." More wonderful words I've never heard. The removal wasn't much trouble, except for the fact that his nurse was sort of ditzy and had NO idea what she was doing. She asked me what she was supposed to do and where the tube was stitched in. Um, I can't see that any more than I can lick my elbow! After she hemmed and hawed for a few minutes (while poking around with a pair of scissors and a tweezer), I asked her to go ask the doctor. She just kept asking ME what she was supposed to do, and I didn't feel comfortable with her messing around and pulling on stuff if she didn't know what she was doing! Dr. Saturday came back in and removed the tube. It had a huge bulb on the end of it, so I guess my fears of accidentally pulling it out were groundless! It definitely wasn't going anywhere. But it's out now and my happiness level increased.

Dr. Saturday wanted me to get labs done today to monitor my white count, mainly. He said he'd keep a close eye on me. If I develop further problems, I'll need more surgery to remove (ick... here come my least favorite two words) anal canal/bottom of J pouch. He thinks that the situation will declare itself in the next couple months. If I do well, then I'm home free - no more surgery! The lab was another adventure, involving multiple phlebotomists and sticks and much digging around to find veins. Phlebotomists of the world: if I tell you what kind of needle works and which vein works and you ignore my advice, you likely WILL NOT be able to get blood. Third time was the charm after finally getting the kind of needle that works on my tired veins. I left a grouchy patient, unimpressed with the level of competency the nurse and the lab people exhibited.

Next, we went to visit my friends who are still inpatient - please be in prayer for them. Hollye has been in for 3 weeks. A J poucher, she had a lot of pain and ended up having surgery - a HUGE HUGE incision - and Dr. Saturday was able to fix her scrunched up guts so that they will work better! She's also getting meds for the infection in her guts. She is working towards HOME and her 6 year old son in the next few days. I mentioned Patt before. She has been in the hospital for weeks and weeks - she had surgery in mid March, and yesterday she had to have ANOTHER big surgery. She has Crohn's disease, and we have a lot in common. She is very uncomfortable from surgery and fighting discouragement with all the setbacks she's encountered over the last several weeks. Please pray for encouragement and hope for Patt and Hollye!

I am still pretty miserable with pain, and my joints are flaring. I'm seeing Dr. Pain tomorrow, so hopefully he can figure something out so I can get some relief and be functional again.

Hannah ;)

Recovery

2011-04-16T19:55:00.002-05:00

I'm still home, which is great! I am definitely having to take this recovery slowly... I've just been pretty wiped out! I am being a good patient for once and laying around and taking it easy.

I've been doing pretty fantastic with eating - best in MONTHS! In the hospital, I got weighed at admission and I was at my lowest weight everrrr. Not good! I weighed myself again when I left... I gained 10 pounds! Probably half of that was water, since it's dropped off since I got home, but I know that some of it was real. I can definitely tell a difference - I can't see my ribs anymore, haha! ;) And my face looks different. Still working hard at eating so my body can heal! I'm still nauseated off and on, but it's getting better. Food actually is tasting good for the first time in months! It's so amazing... praise God!

I'm starting to have issues with my bladder again for whatever reason... what a pain... not sure what's up with that. Since yesterday evening, I've been having some pretty significant pain issues. So frustrating. My tummy is hurting where the abscesses are, and my muscles are hurting so bad... like they were last spring when I ended up going to the ER for pain control. I am taking my meds, but nothing is really touching the pain. I feel silly because it's not really surgical pain or anything, but it is making me so miserable.

Please pray for pain control and for faith and trust!

Hannah ;)

Home!

2011-04-14T22:20:00.002-05:00

Sorry for no update... I am HOME!

Wednesday morning, I felt rather better, so I got to go home for real! Dr. Saturday still doesn't think that whatever happened on Tuesday was steroid related, and wants me to continue on the lower dosage. My labs all looked fine, and I was doing better overall. I'm supposed to call him if I have more episodes of feeling super dizzy and stuff.

He told me that I still have a whole lot of inflammation in my abdomen, so although I haven't had much surgical pain (thank the Lord!!), the pain in my pelvis and lower abdomen is expected to continue for quite some time. Eventually, once my body completely beats the abscesses and the inflammation dies down, I'll have less pain. That was actually encouraging to me, since my tummy pain came back a few days after surgery. I was worried that this meant surgery didn't really work or that something else was going on, so it's good to know that this is expected, and should get better in the long run.

They left in the drain, which is a huge tube thing draining my pelvic cavity where the abscesses were... stitched into my backside. It's about as comfortable as it sounds. ;) When do I get it out? Dr. Saturday said we could discuss that at my follow up in a week. Again with the infamous vague answers... but really, I want to get all better. The last time I had a drain, I had it for 6 weeks, and it was pulled out too soon. Don't really want that to happen this time, so I will try to be patient. I would say I will "sit tight," but that's not really comfortable right now. ;)

I am free to go back to work and everything as soon as I feel up to it, but he told me to give myself a few days at home to see how I feel before deciding on that stuff. So far, I've been totally exhausted at home, whether from hospital sleep deprivation catching up with me, steroid tapering, or post surgical stuff. I don't really feel like I'm bouncing back yet, but it's only a week after surgery! I've been in the hospital so long after my other two surgeries that I've never actually recovered at home, so this is a new one for me. ;) So no plans to do much of anything for a while! I don't have to go back to work until May, so there is no rush. I'm just listening to my body and taking it very easy (yes, this really is Hannah writing).

I'm doing well at home... just trying to eat a lot and catch up on sleep! If I walk around too much, my inflamed tummy really hurts, so I'm just laying around a lot! Nausea has been better, thankfully, if I just take my Zofran. Tummy still just hasn't found its groove since surgery - either works backwards or forwards too fast! Hopefully it will straighten itself out and settle down. I'm still having really bad muscle pain, which is my biggest issue. I'm so happy that I'm able to be on the lower steroid dosage, but I'm sure that is contributing to my fatigue. But this is the first time since AUGUST that I've been able to go down, so it's awesome and exciting!

Thank you all so much for all your prayers and support and love and encouragement! It means so much to me and my family. I am so thankful and blessed!

Hannah ;)

God is STILL in Control

2011-04-12T22:03:00.003-05:00

Well, this morning, I got my PICC line out, got all ready to go.... and suddenly started feeling awful. I got really dizzy and felt out of it and my stomach started hurting. Going home got placed on the back burner.

I just hung out in the fetal position. I was super nauseated and sick all afternoon. Dr. Saturday came in and sat on my bed... I am so frustrated with this... I was doing so well, now I'm crashing. I think it's the steroids, but Dr. Saturday says no way. Hopefully my system will straighten itself out. In the meantime, they restarted an IV, and put me back on fluids and IV meds and stuff.

So I'm not home. But God is still good and still in control and I trust Him!

Please pray that we can figure out what's going on and I can feel better and go home...

Hannah ;)

GOD is in Control

2011-04-11T21:08:00.002-05:00

Today was much better! I was so worried about talking to Dr. Saturday again this morning after yesterday's less-than-fun exchange. He asked for my endocrine Dr's name, and I told him...then I told him I'd meet him in the middle with the steroid tapering, and his grin broke through like the sun through the clouds. He told me that was fine, to not worry, and to not taper any more than what I did yesterday. So we're all good... PRAISE THE LORD! Also, my body has done okay so far with the two days of tapering - I can tell I'm taking less, but it's okay - I'm not crashing!! I am having a lot more muscle and joint pain, which could be from the steroids or from the weather, so that's no fun, but it's manageable.

In other fantastic news, Dr. Star Trek and Dr. Saturday are in agreement that I can go home WITHOUT my PICC line! I will just do 10 days of oral antibiotics - that's it! Sounds better than 3 weeks of IV antibiotics and TPN, right?

I ate so well today... it was awesome! Still dealing with quite a bit of nausea, but I was able to still eat, which is great! My bladder is doing so much better adn I'm off the medicine for it... I probably need a small procedure to help widen the scar tissue that caused the bladder to shut down after surgery, but hopefully everything will just be fine now!

God is so amazing... so many things beyond what I could ask or even think have happened... the only small bummer is the fact that I still likely require more surgery when I'm healthier to remove that last bit of J pouch. But I do not have to face that today! ;)

Anna Anderson, a faithful prayer warrior, made me a sign with verses on it. The sign says:

GOD is in control.

This sign has stayed on my window ever since I got it, and it serves as a constant reminder. Why did I worry about talking to Dr. Saturday today? Why do I worry about anything? As Anna so wisely wrote for me, GOD is in control. I am so thankful for her reminder and I'm incredibly blessed by her faithfulness to pray. May He help my unbelief...

Home tomorrow!

Hannah ;)

Roid Rage... (and this time it's not ME raging)

2011-04-10T21:36:00.003-05:00

Today I got some much-needed rest! I took quite a long nap, which was awesome! In the hospital, they wake you up so often for stuff that you only sleep in hour chunks!

My CT scan looked okay; there's a fluid collection in my pelvis, but they think that it's not a problem. That weird tummy pain has improved, but it's been a rough day with the muscle/joint pain. And get this.... my white count it NORMAL!!! That is so fantastic! Dr. Saturday was so happy about this and said it might not even be necessary to do IV antibiotics at home - maybe just oral! The final decision about antibiotics rests with Dr. Star Trek, however.

I'm doing the infamous "calorie count" again to see if I'm eating enough to go home without TPN. I'm not a huge fan of the food they bring me and I'm really struggling with nausea, so this is a challenge and a source of frustration for me.

Dr. Saturday and I butted heads this morning about the steroids... culminating with him raising his voice, saying I was destroying my body and he wouldn't negotiate on this at all, and stalking out of my room. He just wouldn't listen to anything I had to say... and, to be fair, I wasn't really willing to listen to him, either. He wants to take me off steroids very rapidly, which I think is a horrible idea.

After some thought and prayer, I've decided to see if he will meet me in the middle and decrease more than I'm comfortable with, but less than what he wants. I did this today, so we'll see how tomorrow goes. No doctor I have understands my steroid issues, because, frankly, my story does not make "textbook" sense, and I don't understand it, either! But I know my body and what works and what doesn't. Every new doctor is convinced that they can fix the steroid issues.

Dr. Saturday is right; I do have to keep trying to get off steroids. I have to be more willing to try. I just want to do it a whole lot slower than he wants. Please pray for this conversation to go well tomorrow morning... this morning was simply AWFUL. ;( Also pray because I did start tapering today and it may hit me tomorrow. Dr. Saturday theorizes that tapering will be much easier now that the infection is going away... I pray he is right! Maybe this is the answer and I'll be able to get off the silly steroids forever! That would be so wonderful.

Today was tough emotionally... I feel like I've been here for a long time, although it hasn't really been that long, compared to other hospital stays. Having your doctor get mad at you and walk out in the middle of a sentence is pretty disconcerting, too. I know I'm getting better, but it's just hard sometimes.

Last night, I was reading Psalm 90 and 91... both truly great Psalms. In Psalm 90, Moses talks about our guilt before God and how our days are full of trouble and sorrow. So we are to number our days. We are to be satisfied with God's lovingkindness. I love verse 15, which says, "Make us glad according to the days you have afflicted us."

Psalm 91 talks about God's deliverance, how He answers in times of trouble, rescues us... why does He allow times of trouble and disaster? Why does He even let us be in situations where we need to be rescued? It's so that He can show us Himself. So that He can deliver us, so that He can reveal His great salvation. It's not about us, it's not about our circumstances. It's about Him, and His character, His great love and justice and mercy. And that puts things into perspective for me.

Hannah ;)

Hiccup

2011-04-09T21:01:00.002-05:00

Well... last night was a rough bump in the road for me... I had really, really bad tummy pain all night long. Thankfully, I had a fantastic nurse and on call doctor who acted fast to get me more comfortable! What a huge blessing! That did so much for my peace of mind!

We aren't really sure what is going on. Today I just laid low. Pain and nausea have thankfully been under good control with meds! I had a CT scan to see what's up. The pain feels sort of like pancreatitis, so we did labs. They all look good, so that's good! I have been running a bit of a fever, too... I'm sure everything is fine, just my body doin' its thing. I'm a little frustrated... I was doing so good. There's no reason for me to be having pain, so that frustrates me and makes me think I must be making this a bigger deal than it really is... Anyways...

My mom reminded me today of all the opportunities I've had to minister to people here and all the amazing things that have happened... there is definitely a reason why I'm here in the hospital, and if I have to be here a little longer or if I have little setbacks, then it's because God has something bigger planned! I'm just trying to rest in His plan and know that it is best!

Hannah ;)

Progress...

2011-04-08T17:19:00.002-05:00

Today has been much better! I have been eating - small amounts, but eating nonetheless! No setbacks, just progress! Lost one tube and one monitor today - good riddance and no looking back! I'm a bit sore from the surgery, but that's it! I am having pretty bad muscle and joint pain - it hurts way worse than anything else at this point. But I can still get really good meds here, so it's all good. ;) That's the perk of being in the hospital.

Dr. Saturday told me that my white count is the lowest it's been since I've been here, which is great! Die, infection, die! The ID doctor here, Dr. Star Trek, is awesome... super funny and dry. He told me that "Whenever we inherit someone else's mess from St. Elsewhere, we take things real slowly and carefully." My protein levels are low, so they have decided I'll need to do some TPN at home in addition to 3 weeks of IV antibiotics. And I'll be here inpatient until at least Tuesday. That's kind of a bummer to me, but I've decided... we're going to just give my body the absolute best chance possible to heal. That means extra nutrition, strong antibiotics, time off work... And hopefully, God will use all that and my body will be able to beat the infection and heal itself!

The setting up of the home infusion stuff has proved to be quite a tale... remember the saga of Mr. Clean? Kinda like that. Except this is not as bad, because I'm not at home trying to figure things out; other people are trying to figure things out for me. But it seems like everyone's on the same page now, and hopefully things are getting worked out! ;)

The doctors want to try to taper me down on steroids a bit while I'm here, starting tomorrow (I said no today). PLEASE PRAY! I am exceedingly nervous about this, since I have crashed every single time I've tried to taper... hopefully, here, supported with IV fluids, infection-free... maybe it will be a different story. Please pray for the doctors to listen to me and be willing to work with me on tapering slowly... and pray that I will have a reasonably willing attitude. ;)

Hannah ;)

Post Op Roller Coaster

2011-04-07T15:51:00.005-05:00

Day one post op was pretty good... I felt awesome in the morning and walked a million laps. I'm a little sore from the surgery, but the only thing that really hurts is my poor bladder. After all that walking, my tummy started rebelling, bladder started spasming, and I was a bit miserable. Dr. Saturday told me to slow it down. So I did.

My tummy was working backwards, so I didn't really feel up to food, but the dietitian asked me if there was anything at all that sounded good... I asked her for a strawberry smoothie! She came in grinning an hour later... holding a giant smoothie! They don't actually make smoothies in the hospital... but Starbucks does, so they bought a smoothie especially for me! See how spoiled I am?? Plus, it was delicious!

I felt good again in the evening, and actually felt hungry! I ate some chicken and chocolate! Unfortunately, I had a very rough night... very sick to my stomach, Squirt was dumping, bladder was spasming... I was super miserable. But I have the most wonderful night nurse in the whole world, Martin, who took excellent care of me. This morning, was still feeling the same, plus, I started getting lightheaded and had a high heart rate. Dr. Saturday told me to lay low... no walking today. I was basically totally miserable and out of it until this afternoon, but I'm starting to perk up now!

One thing I was super worried about was pain control... as you know, I have had very serious pain issues with my other surgeries. Thankfully, it has been SO MUCH BETTER this time around. I'm pretty uncomfortable, but nowhere NEAR the extreme pain I experienced with my other surgeries. What a blessing and an answer to prayer.

So right now, the plan is to work towards getting home by Sunday! I will be taking my PICC line home as a souvenir of my stay! Actually, it will stay in and I will have to do antibiotics at home through the line for 2-3 weeks. That's kind of a bummer, but it's what the doctors think needs to happen to give me the best chance possible to beat these abscesses and heal up. It's also better than staying in the hospital for antibiotics! I tried to pin Dr. Saturday down on if I get my drain out before I go home and exactly how long the PICC stays in... I got a bunch of "maybes" and "oh, coupla weeks." Then he grinned and told me that doctors have to take a whole class on vague answers. Funny, but unhelpful. ;)

Please pray that I will make progress in the right direction... pray for patience and that I won't overdo it... pray that my body will heal and beat these abscesses.

God has brought some of my favorite verses to mind again and again over the past few days, from Psalm 63.

"Because your lovingkindess is better than life, my lips will praise you.
So I will bless you as long as I live; I will lift up my hands in your name.
My soul is satisfied as with marrow and fatness, and my mouth offers praises with joyful lips.
When I remember you on my bed, I meditate on you in the night watches,
For you have been my help, and in the shadow of your wings, I sing for joy.
My soul clings to you; your right hand upholds me."

It seems as though God wrote these words just especially for me, for this situation. I'm not eating much, but my soul is filled with Him. I can't sleep much, but my mind is full of His praises. He is my help, my rest, my joy, my God who holds me up as I cling to Him.

Hannah ;)

Surgery #3!

2011-04-05T22:52:00.003-05:00

This is Hannah, on the other side of surgery #3! There is a lot to tell, but I'm not up for telling it all right now! And this is a total TMI post, so read at your own risk!! I got called down to surgery around 1:30 pm, several hours early (thanks to Teresa and Nicole for staying with me til my mom could come!! Y'all were awesome!). Dr. Saturday looked around, and then went after the abscesses! It was a pretty quick procedure! He was able to get to all of them, he thinks, and he put in a drain. In my bottom.

I was in recovery for HOURS, in true Hannah form. I was shaking all over uncontrollably, heart rate was insanely high, having all kinds of problems... it was a mess. They pumped me full of fluids, then I couldn't "go." After more than 5 tries... a specialist was finally able to drain almost a liter of fluid from my bladder. I had a lot of pain afterwards, not so much from the surgical area, but from my joints and muscles and bladder spasms. They were drawing blood cultures to make sure I wasn't septic. I finally made it back to my room just before 9 pm. I'm getting comfortable again, although I'm doing my typical post anesthesia dry heaving.

Thank you all so much for your prayers for today! I am so thankful for them! Thanks to my family for their love... Surgery went well, although the post op stuff has been exciting! Please pray that I am able to sleep tonight! Please pray for my fever to stay away. And pray for my poor mom, who has to "sleep" in a hospital chair... no fun!

I am so thankful for Jesus, who continues to hold me in the palm of His hand during tough times when no one else can help... He is truly all I need.

Hannah ;)

Twas the Night Before Surgery...

2011-04-04T21:11:00.002-05:00

Today has been a more challenging day... it began at 2:00 am. I woke up in a lot of pain from my muscles and joints. I couldn't go back to sleep despite pain medicine, so I just sat up and stretched and prayed. After a while, I opened my blinds - I have an awesome view from my windows. There was a ton of lightening and thunder! I watched the storm roll in! It also sort of explains why I was hurting so bad with the sudden pressure change! I wasn't able to go back to sleep at all, but I just kept praying for people and thinking on God's Word and singing songs to myself while watching the lightening!

Dr. Saturday came in and told me that my white count has gone back up again. I started spiking a fever this morning, and that has stayed with me for most of the day. The doctors are a little concerned that I'm having a high temperature while I'm ON powerful antibiotics.

So... the plan for tomorrow afternoon/evening is to do the "exam under anesthesia" - a small, exploratory surgery. That way, Dr. Saturday can see what needs to happen in my pelvis, and he can get cultures from the abscesses. Then, they can target my antibiotics better. It's a win-win situation... if I end up NOT needing more surgery after tomorrow, they can give me better antibiotics. If I DO end up needing more surgery, they can hopefully decrease the inflammation in my pelvis with better antibiotics before surgery. So tomorrow will help determine the next step: more surgery, different antibiotics....

Please pray for relief from pain... I've been off and on pretty uncomfortable today. Also pray for Dr. Saturday to sleep well tonight and to do a good job tomorrow! And pray for peace for my family! Primarily... pray that God will be honored through this situation! I have complete peace about tomorrow and I'm not at all anxious or worried, which I know is from Him! I will try to get my mom to update after surgery tomorrow night!

I've been thinking on I Peter 1 today... God has called us to be born again according to a living hope! Jesus is raised from the dead! I have an inheritance that will not fade away! Because of this, I can rejoice in my trials. I know that as I trust in God, my faith will bring Him glory and honor! And all that is news worthy of abusing exclamation points to express!!!

Hannah ;)

Sunday

2011-04-03T22:07:00.002-05:00

Today, Dr. Saturday came in and told me the plan (for now)...

On Tuesday, they will just do an exploratory surgery - not to fix anything, just to look and assess what is going on as best they can. This will be sort of similar to the procedure/scope thing I had a few weeks ago, but in the operating room with operative instruments. After that, we can make a decision about what next - more TPN and antibiotics, more surgery, all of the above, or none of the above! He is pleased with my progress and encouraged that my white count has gone down a bit, but he definitely thinks that I need to stay here for a while. I'm still having a rough time with belly pain and no appetite.

I told him I was a little concerned about not doing the surgery. I have typically felt better when I'm on the antibiotics. Then, when I go off them, I feel bad again. I would hate to go through all of this just to relapse a few weeks after I stop antibiotics. Then I'd be back in the same position I'm in now. He told me not to worry; he wouldn't let that happen. He has been more or less appalled that I'm in the state I'm in now; apparently I'm pretty far gone, haha! ;) Every doctor who comes in asks, "Are YOU the patient?" because when they read my chart, they are expecting someone who acts waaaaay sicker.

This afternoon, I felt the worst I've felt since coming to the hospital, but I still look and feel better than I have for several weeks. Hopefully feeling bad is just a fluke! Please pray for my body to adjust to the TPN... my blood sugars are still rather erratic (high, requiring insulin sometimes, sometimes being a little low), which I think may contribute to how I'm feeling.

Thanks again for all your encouragement, support, visits, calls, etc. They really help so tremendously! God has given me numerous opportunities to share the hope that is found in knowing Christ with others here at the hospital!

Hannah ;)

Progress

2011-04-02T22:45:00.002-05:00

Today was a good day! I started TPN last night. Honestly, today I have had the most energy I've had in MONTHS. I walked around and visited with several wonderful guests (thanks so much to everyone who came!) and I didn't need to nap or anything. It was amazing. Dr. Saturday tells me it's incredible what getting nourishment for the first time in months will do! Basically, my body has been trying to use all its energy to keep the abscesses at bay. Now it's getting stronger antibiotics plus tons of nutrition to help!

On the downside, I have had quite a bit of belly pain and nausea today and consequently didn't do so well with eating food by mouth. But that's okay; that's why I have the TPN. And hopefully my tummy will start hurting less soon.

The scan showed that big cyst on my ovary again, so they had a OB/GYN doctor talk to me today. He was a strong Christian man and was pretty much the sweetest guy I've ever met. Basically, it's not big deal since it's not bothering me. He thinks it is somehow related to scar tissue and adhesions from my previous surgeries. It will probably rupture at some point, which will hurt, but clearly, I have other, bigger pain and inflammation issues in my tummy besides that, and nothing really needs to be done about this.

He did say something that really reassured me... he said, "Whenever God allows you to get married, you should really get pregnant. It would do wonders for your body. Your arthritis and autoimmune stuff would go in remission, and the baby would stretch out the scar tissue in your abdomen, so you'd have less pain." I thought that was awesome! But I've been told that the likelihood of being able to conceive would be pretty slim. He told me that, number one, God can do anything He wants to and nothing is impossible with Him, and two, I would be a great candidate for IVF. Then he told me that somewhere out there is the perfect guy, praying for me... ;) It was really cute. No idea what the Lord holds for my future, but it was nice to hear that I have options!

Please pray that God would make clear what path we should take - proceeding with surgery, or holding off! Let's beat these abscesses and get rid of the inflammation, pain, and high white count! Also pray that my body will tolerate the TPN well - I'm had some issues with blood sugar today, requiring insulin a couple times. Tonight they are upping the amount of TPN I receive, which will raise my sugars even more. Hopefully my body will adjust and my pancreas will kick in high gear to help me metabolize all this extra nutrition!

Thank you all for all your prayers and support for me and my family. I have been tremendously encouraged by you all. You help me keep my eyes fixed on Jesus! Please keep my family in your prayers as well.

Hannah ;)

Holidays at the Hospital

2011-04-01T21:16:00.005-05:00

Being in the hospital is tough.

You go from looking like this:

To feeling like this:

People stab your arm (Oops! Twice! And without giving the lidocaine time to work!) and thread lines from your arm into your heart:

And then people come and make April Fool's Day at the hospital (see my "visitor" staring out the window? Totally fooled nurses and techs!).

And people come and play games and sit and talk.

And people bring wonderful, brightly colored Bible verses to decorate your room.

And people bring pansies picked from their yard.

Although they haven't hung my TPN yet, I am well-nourished.

Hannah ;)

Answered Prayers

2011-04-01T08:30:00.006-05:00

So I'm all tucked away in the hospital... I came in yesterday afternoon. It was a little lesson in patience, as the reason that I came in was to get a line placed and start TPN. That didn't actually happen yesterday. But at least we got an IV in after only TWO tries and started some very powerful antibiotics and IV fluids. Plus, I decorated my room (thanks, Araenae!), read an entire novel, watched a few episodes of a TV show, and had a lovely visit from Emily! It was so good to see a familiar face! She works here in nutrition, so she gave me the inside scoop on how to get yummy food! Thanks, Emily! ;)

I did get that PICC line placed this morning! My whole arm was numb from for an hour or so afterwards, which felt so funny! It's like after you go to the dentist, but it's my arm instead of my cheek. Trying to put my hair in a ponytail was awesome! My arm kept flopping! ;) The lady did tell me that she used the last spot in my right arm. If I have to get a PICC line again, they will have to start on the other arm. But really, this should be my last PICC line ever, right?

Dr. Saturday wanted to get another CT scan today... I've been trying to avoid these, but figured they would need one more before they cut me open. They did it WITHOUT contrast (remember, I had a bad allergic reaction to the contrast in October), so the only risk to me is cancer from the cumulative radiation from having 8-9 CT scans in the last year or so. ;) I did have to drink some yucky stuff first, though. I was super nervous/minorly freaking out about drinking it. The last time I drank it, I had some of the worst belly pain I've ever had. And for me, that's saying something. I texted several people asking for prayer because I was not excited about going through that again! And... God answered! Thank you all so much!! ;) I drank it real slow and only got about 3/4 of it down... but it did NOT make me sick or hurt me! They gave me nausea and pain meds after I drank half of the stuff to help prevent any bad reaction. God is so good in those little things! ;)

The report on the CT is actually... IMPROVED! Praise God! This will make surgery much simpler and more likely to succeed! In fact, there is a small chance that I may not even need surgery or I could just have a more minor surgery! This could be possible if I show tremendous improvement on antibiotics alone after several days. I would need to have my white count go back to normal and my belly pain go away. This is just a very small chance, but God can do it! Honestly, though, they are keeping me on the schedule for surgery on Tuesday. But all in all, this scan was such good news. It showed very large amounts of inflammation throughout my pelvis, explaining the pain I'm having, but the abscesses are a bit smaller than they were in October, at any rate! This makes the situation much more straightforward - things aren't as "messy" as they were.

Dr. Saturday teased me about having to twist my arm to get me here... everyone who has seen me says I look perkier... I really do feel more energetic! Whether it's the fluids or antibiotics or both, I have more energy than I have in a few weeks. The doctor hopes to see even more improvement once my nutritional status is improved. My stomach is hurting worse and worse, though, which stinks, but really, I've been through much worse. And he told me that I'm not crazy; there is a very legitimate reason why my stomach hurts so much and why I have trouble eating, so he told me to not sweat it. This is silly, but those words were good to hear... sometimes I start thinking I'm being dramatic or something.

So today, I'm just hanging out! Hopefully starting TPN. I met a lovely lady, Pat, on my floor today... she has Crohn's disease and, although we are 50 years apart in age, we have basically led parallel lives with surgeries, ostomies, TPN, pain, treatments, abscesses... we also share a love for Jesus! My verses and comics on my door (thanks again, Araenae!) caught her eye, and we started chatting. She told me to hang in there and never give up! Between hospitalizations and surgeries, she is a competitive skiier and tennis player! She lives in Colorado, but comes all the way down here when she needs surgery so she can have Dr. Saturday operate on her.

I had some lovely, lovely guests today... bearing games and April Fool's jokes and wonderful brightly colored verses!! I'm thankful for the company and encouragement! I'm thankful for all the prayers God has answered today: getting that contrast down, improvement on the scans, encouragement from visitors, opportunities to share the hope I have in Christ!

Please pray that God will make it very clear the path we should take, and that my stomach will start feeling better!

Hannah ;)

Tuesday Turnabout

2011-03-29T21:59:00.004-05:00

Today is Tuesday, so of course that means it's time to see more doctors! ;) I took my films in to Dr. Saturday to see what he thought. He and another doctor loaded in the films... and as they came up, there was a collective groan and "Oh. My. Goooooosh" as my sick little guts filled the screen. They apparently look quite bad. I heard this a few times yesterday, but the reaction today was pretty dramatic. I'd rather receive special attention for doing something cool besides growing a veritable garden of pelvic abscesses. But I digress.

Once he finished looking at the scans, Dr. Saturday turned to me and pointed to my bookbag. "You packed?" he asked. He wanted to admit me to the hospital on the spot. I looked at him with terror in my eyes. He modulated and said he'd allow me a few days to get mentally prepared (See? I like this guy. He understands me). He really did want to admit me on Saturday for a PICC line and TPN.

When all the dust settled, this was the plan:

Thursday at noon: Get admitted.
Get a PICC line inserted.
Start TPN (IV nutrition) and IV antibiotics.
Thursday - Tuesday: Get plumped up and juiced up and full of antibiotics while watching movies, entertaining millions of guests (PLEASE COME AMUSE ME!), attempting to catch up on thank you notes from August surgery (impossible), studying for the MCAT, decorating my room, attempting to eat a lot, harassing the staff, etc.
Tuesday night: SURGERY

Surgery will be what I've discussed previously - basically removing the (here it comes again!) anal canal and cleaning out the pelvis as much as possible through that hole, packing the wound with stuff, and seeing how it turns out! Of course, they don't really know for sure what they will find or what they need to do until they actually open me up, but that's the best guess.

Hopefully, about 2 days after this, I would be able to go home. But we all know how well I do after surgeries. So no real conjectures on this.

Last night, I was praying that God would give clear direction as far as the "when" of surgery. He certainly did that! He, once again, shows Himself faithful...

After getting all this news, I felt a little weird. Agreeing to another surgery was tough. I went up to see my brother at church for a hug... and ended up also having Tom and Rocky and Mrs. Bone and Dusty all pray for me! It was very special, and I'm thankful for the fellowship of God's people who are so faithful to pray for me and my family! Please keep us in prayer as we prepare to embark on a new adventure (sounds like a tag line for a new movie)!

Hannah ;)

Monday Doctors

2011-03-28T21:17:00.006-05:00

My prayer over the weekend was that God would make it very clear which doctor I should choose. I was worried that it would be a tough choice...

Monday morning I went back to see Dr. Sidekick. He explained that I have basically two choices: one, surgery to remove the (wait for it... favorite phrase ever....) anal canal and clean out the abscesses through that incision only, then packing that wound. This is the conservative surgery. The more definitive surgery would be to open me up and really clean everything out, possibly necessitating plastic surgery and stomach muscle flaps transposed into my pelvis to reconstruct things. HUGE surgery with several WEEKS in the hospital. I elected for the conservative approach... ;) The problem is, of course, that it might not actually work. It might not heal, they might not get all the infection out, etc. It was sobering.

The interesting thing is that he gave a name to the weird pain/body freaking out episodes I've had after both my surgeries and after my drain placement procedure. It's called SIRS, Systemic Inflammatory Response Syndrome, basically a form of shock. My immune system is just so reactive that it causes inflammation everywhere after it gets "assaulted" by surgery. And it makes my heart rate soar, blood pressure plummet, oxygen levels bottom out, incredible pain, etc. So we would be hoping that my body will NOT do that if I have surgery again...

Next I went to Dr. Second Opinion.

Pros:

He gave very detailed explanations.

Very caring and helpful, and experienced with the surgeries I've had.

His office building is snazzy and mod with comfy waiting chairs.

This picture was in the exam room:

Cons:

He definitely thought of himself as a second opinion only. He did not really want me as a patient.

He told me to stick with my current doctors, since they are "doing their very best for you."

Not Really a Pro Nor a Con But an Interesting Side Note Worthy of Blogging:

His nurse had an honest-to-goodness mullet. No joke.

In conclusion, God made it so apparent that I should go with Dr. Saturday. All three doctors have essentially laid out the same choices and possible surgeries for me - they are all saying the same thing. So that consistency is good. Dr. Saturday had the most holistic approach and was willing to take me with all my millions of issues. The only thing that makes me nervous is being at a different hospital that is not familiar with me. God is so good and I'm so thankful for His clear direction!

Hannah ;)

Dr. Saturday

2011-03-27T21:46:00.000-05:00

So... Saturday bright and early found me trekking to the doctor's office to meet with a new surgeon. I was undecided if he was a sick workaholic masochist or just incredibly devoted to his patients to see me on a Saturday morning!

Since I'm getting 2 opinions besides Dr. Sidekick, I started making a mental list of Pros and Cons for Dr. Saturday...

Pros:

His waiting room has two fish tanks! My pediatrician's office had fish, too. This is a good sign.

His exam room has slightly dirty colon jokes on the wall

He is seeing me on Saturday

Cons:

His building smells like mold

His building was hard to find

His exam room has antiquated scoping tools and such laying on the counters. This is a major turn off.

The appointment went well. He seemed to instantly grasp the entire situation, knew exactly why I was having the problems I'm having, he saw the big picture... it was pretty amazing.

One of his first comments was about my size... he wanted to admit me to get a PICC line and start TPN (IV nutrition) to get me plumped up a little. I balked, so he said I needed to do 2 cans of Boost/Ensure per day in addition to what I'm doing now. I told him I had talked to a dietician and was trying to do the 6 meals a day thing. He looked at me and said, "Honey, it ain't working." So I got some shakes and I will be trying to incorporate them into my diet... yuck. I am losing weight again, though, and I definitely want my body to be better nourished for this surgery, so now is the time for action! ;)

He said that I still have my (least favorite phrase ever coming up...) anal canal present. He says that he usually takes that out because... get this... leaving it in tends to cause pelvic abscesses that can't drain and can't get better. So yeah. It needs to come out.

His plan would be something like this: Get me admitted for 3-4 days to get some IV nutrition going, re-run some tests, and then do a small surgery or "exam under anesthesia" to see exactly what is going on in my pelvis. Then, the next day, he would do surgery to remove the last remnant of my J pouch and try to clean out the abscesses as much as possible. Then, he'd put in this foam WoundVac stuff to suction out the infection. After a while of this, they might replace the foam with a drain like I had before. This could all be done, hopefully, through my, um, bottom. Hopefully, eventually, the infection will all drain itself out, and the wound will heal, and my bottom will one day heal itself shut.

This would be an unpleasant, uncomfortable (drains and wound vacs in my bottom) experience, but it is much less invasive than my previous surgeries have been. And hopefully, it will work to get rid of the abscess!

He couldn't really say anything for sure (and I still haven't seen my other opinions) until he saw my actual films, not just the reports, which was all I had. So he asked how soon I could get them. I told him that I could probably get them on Monday... and his response was, "Okay, I'll need to see you again on Tuesday." He definitely is responsive! The only thing I didn't like was that he didn't do a ton of explaining... He did explain everything, just wasn't super in depth. Hopefully was just because he didn't have the actual pictures to look at yet. But I liked him and had a good experience and would feel comfortable with him. He saw the complete picture of all my weird symptoms and problems and didn't just focus on my stomach issues. That's a good sign...

The day ended on a somewhat awesome note. The building across the way was having this party... on every floor, there was a different catered buffet line. There were 10 floors. In keeping with my desires to follow Dr. Saturday's instructions to get in some nutrition... we crashed the party and hit up every single floor. No joke.

On Monday I will meet with Dr. Sidekick again and another opinion. Fun fun!

Hannah ;)

The Rest of the Week

2011-03-25T18:46:00.000-05:00

Well, Tuesday ended up being very tough! I had to leave work early because I was hurting so badly that I could not concentrate at all and none of my meds were helping. ;( I've NEVER left work EVER, no matter what, so this was a big, big deal. I felt so horrible and I felt bad that I let the folks at work down, but it was for the best, I guess.

Dr. Pain's office worked me in, 'cause they are just awesome like that. ;) The nurses told me that I was their favorite patient. He gave me some different pain meds to test drive. You see, I have really, really strong pills - I call them my "ABORT, ABORT" pills, because they pretty much knock me out. Obviously... I cannot take these at work. ;) So he gave me some of the same drug in 1/3 the strength, so I can try to see if I can achieve functionality - hurting little enough that I can think straight, but not so drugged that I can't see straight. Oh my life... ;P So far, the plan has worked. And once I got the pain under control, I actually took quite a bit LESS medicine overall for the rest of the week.

He also talked to me a lot about the mental side of things... just asking questions about how I think about my illness, and stuff like that. I thought that was an interesting question, and I've been pondering that. He also talked to me about some natural stuff that I'm trying. He does the absolute best job of treating me holistically.

The rest of the week got a little bit better each day. It was definitely a rough week, and my energy is pretty low, but I was functional again, thankfully! I'm thankful for God allowing me to make it through the week... I was afraid, after Monday and Tuesday, that I was going to have to just throw in the towel at work.

Hannah ;)

Up and Down

2011-03-21T20:59:00.001-05:00

Thank you for your prayers - I know SOMEONE must have been praying, because Friday and Saturday and Sunday were BETTER! I took extra steroids on Friday, and it was a much better day as far as pain and energy and nausea were concerned! Praise God!

I did get into trouble with my endocrine doctor. She is upset that I have not been able to taper at all on my steroids since... August. Ugh. Trust me, she's not as upset as I am! No one wants to be off steroids more than I do! It just isn't working. Every time I drop down, I feel so awful. I've tapered off steroids before. It's been hard at times. It has made me feel crummy at times. But I've ALWAYS been able to keep tapering. Until this time... I don't know what's different, but I really think my body just can't do it! Anyways, please pray that God will give Endo doc and I wisdom to know how and when to taper, 'cause whatever we're doing now isn't working. I dodged a bullet, though, since Endo doc decided it would be unwise to taper until after I'm better from my upcoming surgery. At that point, we will regroup and figure out a new game plan. I am already dreading that day. The attempts to taper followed by complete crashes just destroy me. I've tapered off steroids many, many times since I got diagnosed with UC, but for some reason, my body just can't do it now! Anyways, that's a battle I don't have to face until after I am completely recovered from my upcoming surgery, so I'll leave it in His hands!

So, like I said... the weekend was GREAT! I went HIKING on Saturday... that's right! ;) I could hardly walk a few weeks ago, and now I'm hiking... yesssss! Praise God! Sunday was great, too, until the evening. I totally crashed - lots of pain, lots of nausea, too tired to move. I fell asleep around 5:30, got up briefly to take night meds, and went back to bed. But whatever - I had a wonderful couple of days and I fully enjoyed and lived up every second of feeling good!

Getting out of bed this morning was HARD. Today was HARD. My belly is just really painful. Wearing a seatbelt hurts, because that's right where the abscess and my pain is. Going over bumps or sitting down hard causes waves of pain. I'm also having that all over pain again - my whole body just hurts. Work was tough today. I am having a hard time working. Usually no one can tell when I don't feel good, but this afternoon, my stomach was hurting too much to hide. ;( After work, I had to curl up in my car for over an hour until I felt okay enough to drive home.

My GI doctor and I talked tonight. He is going to talk with ID and see if we can perhaps change my antibiotics to something that will cause LESS overwhelming nausea (I drove to work with a cup beside me because I feel like I'm about to toss my cookies. It seems to be bad in the mornings and evenings, but okay during the day... He is also going to talk to Interventional Radiology about my most recent MRI on the remote chance that I could temporarily delay surgery/be more comfortable until surgery by having another drain placed.

I am so thankful for the temporary reprieve this weekend! I felt so good that I thought maybe I was fine and beating the abscess... Sunday evening and today were "back to reality" for me! I'm back to feeling pretty miserable. Please pray that I would be a light for Christ!

Hannah ;)

Trust and Obey

2011-03-17T20:12:00.000-05:00

Thank you all for your prayers and encouragement to me... it is a huge blessing and greatly needed! Please keep it up... I am so thankful for the encouragement.

I went back to work on Wednesday, and I was okay, but went to bed soon after getting home. I did talk to GI Dr on the phone yesterday. He reiterated the scope findings - basically, that there is some intestinal tissue that should have been removed in August that is still present and is causing problems - possibly that is setting off my systemic inflammation (arthritis, etc). This needs to come out! Also, the abscess is causing my other pelvic organs to be "reactive" - everything is inflamed and angry. The abscess also needs to come out and my abdomen needs to get cleaned out. We discussed surgical possibilities again... he is working on sending my records to some other folks, too. Basically, I will be seeing THREE surgeons next Monday (in a little over a week).

I'll be seeing Dr. Sidekick, and also two other surgeons... each representing different hospitals. Just to get three opinions on what is going on and what needs to happen. Maybe three is excessive; I don't know. My GI doctor and I don't think that I have anything to lose by getting opinions from other experienced doctors. It was totally divinely ordained how all three of these appointments fell into place so amazingly yesterday and today. The hard part is going to be choosing between the three doctors - I really don't think that there is a bad one in the bunch.

I'm feeling sort of miserable... I'm having that all-over body pain, and my abdomen is really hurting. In speaking with my doctors, the consensus is that I will likely just feel awful until they get the infection out. Although I'm not convinced that all of what I'm feeling is from infection. Plus, the antibiotic cocktail I'm on is infamous for being very harsh. They make me pretty nauseated. I'm SUPPOSED to be working on eating well and gaining weight, but I've been feeling too sick to do a good job. If I'm going to have surgery, I really really need to be better nourished going in so I have a better chance at healing this time. Please pray that my tummy settles down so I can get in some good nutrition!

I am still trying to figure out what to do about work. I had today off, which was great, since I barely got out of bed! I am having a hard time getting comfortable enough to be functional and my energy is pretty shot! ;)

Please pray for wisdom and strength and peace. God has given me a lot of peace, because I can't really do anything else until after I see the surgeons. I can't make any surgery decisions or plan my life or anything until then. So, on a purely pragmatic level, I have nothing to worry about! On a spiritual level, God calls me to NOT worry about tomorrow. He is in control of this whole universe, and whatever He calls me to endure is really just a drop in the bucket. And He always has a reason, although He does not have to explain it to me! My job is just to trust and obey. We used to sing this hymn all the time as kids - how Sarah and I learned to harmonize ;)

"Trust and obey,

For there's no other way,

To be happy in Jesus,

But to trust and obey."

Simple words? Perhaps. But what deep truths. Do you practice this every day?

Hannah ;)

The LAST Scope

2011-03-15T21:24:00.002-05:00

The title of the post reflects my heart's desire... ;) and I am BELIEVING that this was the last scope I will EVER have to have!

I just have to have a big shout out to everyone who cared for me today... each and every person, from the check in lady to the anesthesiologist, was exceptionally kind, caring, and so wonderfully nice and tender and sensitive... the great people made it a much more pleasant experience than a scope should be! ;) God is so great to provide such sweet folks to take care of me.

I talked to Dr. Sidekick before the scope. Basically... I need surgery. The abscess, based on the MRI report, has actually spread to involve my left ovary, my uterus, my vagina... it's spreading throughout my pelvis, and he thinks it could spread to my bladder and my pelvic bones, which would be NOT. GOOD. AT. ALL. What he is recommending is surgery to go in, remove all my remaining anus/rectum (which, if you recall, Dr. A was SUPPOSED to remove in my August surgery), remove the abscess, clean out my pelvis, and attach a WoundVac to literally try to suck out the infection and suck the wound shut. This may also call for the involvement of plastic surgeons to basically reconstruct my pelvic area. He HOPES that this would heal and that they would be able to get all the infection out. I asked him about watching or trying more antibiotics, but we are past that at this point.

The actual scope was a pediatric scope, using CO2 gas instead of O2... they were scoping in all my, um, holes down there to see if there were connections and what was unhealed. Basically, they could not really see much and couldn't get the scope in very far.

I woke up in quite a lot of pain. Usually, I wake up feeling fine (if totally druggy and loopy), but not this time, alas. The recovery nurse asked me what I wanted... fentanyl, morphine, or dilaudid! Haha - not a bad choice in the bunch! I went for my personal fave, dilaudid. Then a chaser of my other favorite, Zofran (for nausea)! It took a few rounds, but I eventually started to hurt less and felt more comfortable. I was totally loopy for the rest of the day. The recovery nurse was awesome and my number one hero, because she also gave me a bag and a half of IV fluids. She (correctly) figured I was pretty dehydrated. She was so smart. A Semi Colon going without water all day so she can have anesthesia gets pretty dry! Getting the fluids was fantastic!

I am struggling with the unfairness of this whole situation... it's not fair that I need another major surgery to remove stuff that I was told would be removed in August. But then I have to stop and think... it is not fair at all that I lived in rebellion towards God, hating Him and doing my own thing. It is not fair that God punished Jesus for MY sins. It is not fair that God counts me as having His Son's righteous life.

This does not mean that I don't hold my doctors accountable for their mistakes. But it definitely changes my perspective and shows me that I have no right to hold anger in my heart against them!

Please pray for me and my family as we seek (at my doctor's counsel) a few other opinions about how to proceed. Please pray that all this can be worked out in a timely manner. Please pray that we will find the right surgeon for the job. Pray that I will be able to make wise decisions about what to tell my bosses, since I will need to have time off for all this...

Hannah ;)