Saturday, December 31, 2011

2011 by the numbers

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 ;)

Friday, December 30, 2011

Wound Stuff & Happy News!

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 ;)

Tuesday, December 27, 2011

Steroid Woes

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 ;)

Wednesday, December 21, 2011

An Empty Cup

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 ;)

Monday, December 19, 2011

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

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!

Tuesday, December 13, 2011

Catching Up...

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 ;)

Monday, November 28, 2011

Honey Buns

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 ;)

Thursday, November 24, 2011

Happy Thanksgiving!

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 ;)

Tuesday, November 22, 2011

An Open Letter To ConvaTec

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.


Hannah ;)

Wednesday, November 16, 2011

Yeah, REALLY Sweet!

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...


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 ;)

Friday, November 11, 2011

Shootin' Meth on a Friday Night

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 ;)

Thursday, November 10, 2011


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 ;)

Tuesday, November 8, 2011

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

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 ;)

Saturday, November 5, 2011

What's in Semi Colon's Fridge?

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 ;)

Sunday, October 30, 2011


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 ;)

Friday, October 28, 2011

Scary Costume

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 ;)

Thursday, October 20, 2011

God's Goodness

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 ;)

Friday, October 14, 2011

An Open Letter to Squirt

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 ;)

Tuesday, October 11, 2011

Prayers for Laura

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 ;)

Friday, October 7, 2011

Happy Birthday, Semi Colon!

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!

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 ;)

Sunday, October 2, 2011

Wound FAQ and Rise & Conquer!

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 ;)

Tuesday, September 27, 2011

Chocolate Bunnies

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 ;)

Thursday, September 22, 2011

Pray for Nadia & Kendra!

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 ;)

Sunday, September 18, 2011

No Strings Attached

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 ;)

Friday, September 9, 2011

Wounds on Both Ends

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 ;)

Wednesday, September 7, 2011

Surgery and Good News!

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 ;)