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Thursday, December 30, 2010

The Return of the Ab Four

Wednesday was another day full of doctor stuff! I got thoroughly ultrasounded for literally an hour and a half. It actually ended up being rather uncomfortable, which I had not at all anticipated. I didn't realize how sore my ribs are from arthritis, so having a probe being pushed over and over them for a long time was not so fun. Also, I'm pretty tender in my lower abdomen, so I felt pretty beat up by the time they were through with me.

The ultrasound tech was really sweet, though, and like everyone these days, seemed rather shocked at all that I've been through. I got a chance to talk to her about what God has done in my life through this, which was neat. She didn't like what she saw, so she called in a doctor, and the doctor looked, too.

Next I went over to ID doctor. If you will recall, I was less than thrilled with the care I've received from him. I was pleasantly surprised today. He spent a lot of time with me, listened to what I had to say, and answered all my questions. He also spoke on the phone with the ultrasound tech about my pictures. I am very thankful for all of this!

Just like Monday's appointment, this was more news I didn't want to hear. First, the ultrasound confirmed that I do indeed still have a bit of colon or J pouch left. Again, this is highly concerning to me for a number of reasons. As far as the rest of the ultrasound is concerned... they are really not sure exactly what's going on. But it seems I still have the Ab Four (my abscesses). I have several areas of fluid collection in my abdomen and pelvis. The most significant ones are in the spot where I'm having pain. Based on my symptoms and the ultrasound, they believe, but aren't entirely sure, that there are also some fistulas (abnormal connections) between my intestines, whatever is left of my colon, and my uterus. If this is truly the case, these tend to be quite complicated and would require surgical repair.

The main concern and danger to my health is that it seems that the abscesses/fluid collections are being caused by a fistula between my intestines and abdominal cavity... basically a teeny, tiny leak. It's got to be a tiny leak, or else I would be WAAAY sicker than I am. But it's enough of a leak to cause the fluid to collect, keep my white blood cell count elevated, give me low grade fevers, etc.

So... for now, the plan is to go on a powerful antibiotic cocktail and reevaluate the fluid collections with another ultrasound in two weeks. It would be wonderful if the fluid would decrease or go away. If not, we will do more testing with all kinds of dyes and stuff and MRIs to try to determine where the abnormal openings and connections are. Then they can determine how to best go about fixing this. The ID Doctor thinks that this will take quite a while to figure out, and that I'll probably be stuck on antibiotics for some time. Also, as long as this persists, I shouldn't drop down on steroids or do any immunosuppressive treatments for my arthritis.

Please pray for protection for my body as I am going on antibiotics that are very rough on my system... after just one dose, my tummy began feeling upset. I'd really appreciate prayer that this whole situation would somehow resolve and it wouldn't even be necessary to do all the testing, treatment, and surgery. I truly never, ever want surgery again. On the other hand, it would be so great to get this resolved. Please also pray for my family and I to have a proper attitude and perspective as we try to process all the new information we've learned this week. We continue to try to make the wisest decisions possible about my care, and we really need God's wisdom to know the best things to do.

God is good, and I see His goodness in so many ways, even though Wednesday was a rough day. ID doctor's good care, the kind ultrasound tech, a family who loves me and cares for me, good friends who check up on me and listen to me... I could go on and on. But mostly, I am thankful for the hope I have that will never disappoint, as Romans 5:5 says. Hope for health, hope for good doctors, hope for getting better... all those hopes can and will disappoint me, because they will fail. But my hope in Jesus Christ, the hope I have that I have a restored relationship with God, that I have the Holy Spirit, that I experience the love of God, that Christ's death made all of this possible... that's a hope that will never let me down. It's a hope that I cling to in the midst of difficulties. It's a hope that allows me to rejoice even in my sufferings. And what a blessing that is.

Hannah ;)

Wednesday, December 29, 2010

Disconcerted

Hope everyone had a very merry Christmas! Yesterday I had an appointment with my GI doctor. It was rather disturbing and raised more questions than it answered... bottom line is, he does not think that the abscesses are the cause of my pain and high white count. He thinks I have some systemic autoimmune thing going on (hmm... I think I may have heard that before!). More concerning to him is that I continue to "poop" stuff from where my colon/j pouch/rectum used to be. He examined me, then dropped the bombshell.

Apparently, I still have a few inches of rectum left. This means that... my UC could come back at any time in that area of tissue. He was concerned that that was the cause of the bleeding, etc. I don't think it is, but the room was pretty much spinning when he told me that I could get UC again. We discussed this possibility in detail with Dr. A before surgery, and therefore decided to remove EVERYTHING down there to eliminate the chance of that happening. Evidently, however... Dr. A did NOT remove all that he said he would. I am beyond shocked at this... I really don't even know what to think or say. It is really just overwhelming to me to think that I could get more disease again in an area that was supposed to be removed.

Also, I have some other weird stuff happening in my pelvis. Tomorrow I'm having a couple ultrasounds to try to define my current anatomy and figure our what exactly is going on. I also will see the ID Doctor. Basically, a day of fun and games, haha!

GI doctor told me that he thinks all these issues may require surgery of some kind or another to mend. But I really don't want surgery and no one wants me to have surgery again! So we're going into all this testing knowing that I will probably end up choosing to just live with my issues rather than risk another surgery. I'm disconcerted and baffled by yesterday's news... it may sound trivial and silly, but hearing that there's a chance of my UC coming back AGAIN has really shaken me up. I am so thankful that God is in control of all of this, and that I can trust Him, and that He is doing everything right!

Spurgeon said, "The Lord's plants can and do flourish even when there is a drought. A godly man often grows best when worldly circumstances are daunting." I pray that through this, God will grow me closer to Himself and use me to impact others!

Hannah ;)

Wednesday, December 22, 2010

More Doctor Frustration

Okay, I reread my post from Monday... I'm sorry I was so grumpy! Things are all about the same - tired and really hurting, but still working! I'm going to try to drop down on steroids again tomorrow... we shall see how that goes!

Yesterday, I talked with GI Dr's nurse because I ran out of Zofran (magical anti-nausea medicine). Nooooo! ;) I LOVE that stuff; it's better than crack. It just makes my tummy feel happy all over. She promptly called me in a whole bunch of Zofran with three refills. It was a good day. She asked how I was doing. I was like, "Um... since you asked..." and told her about the continuing UTI symptoms and issues with the abscesses. She was all concerned and said she'd have GI Dr call me the next day. I reassured her that nothing acute is going on; nothing has really changed since November... but it hasn't gotten any better, either.

GI Dr called today. When I told him about the pooping stuff, he said, "Miss Hale, that should not be happening." Well... yeah. He was slightly aghast and wanted to know what Surgery thought of this. I told him that they are kind of shrugging it off. He kept emphasizing that this isn't normal and he's sorry that everything has been so messed up with me. He charted my labs, and it's pretty clear that my white count has been creeping back up since I got off antibiotics. Seems to me that the ID Dr told me he would call me if my white count was elevated... I am so not impressed with him. Anyways, GI Dr thinks that the abscesses aren't gone/are getting worse again, since I'm having pain and problems. But since I'm not running a fever, we're gonna hold off on doing anything for now. He did tell me I can increase my bladder numbing medicine for comfort until we figure out what to do.

I was supposed to return to see ID Dr again this week, but getting an appointment has turned out to be hugely challenging. I called several times over the last two weeks and they never got back to me. Finally, I talked to a lady yesterday... turns out he only sees patients on days when I cannot get off work. I really don't want to go back to see him, since he did not listen to me the last time I was in the office. And he keeps ordering labs, but doesn't actually look at them or treat me based on their results. It really seems like some kind of infection has been getting slowly worse over the last three weeks, but he either thinks I'm fine or isn't paying attention to the labs. Bottom line is that I still don't have an appointment with him. But I don't think that the appointment will actually be helpful, anyways.

I am still having a bad attitude about doctors in general, and the ID doctor and surgeons in particular. ;) Seems like they mess up over and over again and simply aren't providing good care. I am at a loss for what to do about it, but I am thankful for GI Dr keeping tabs on me and stuff. Mainly I just wish I were healthy and wouldn't have to deal with all this stuff... but that's just silly. I know that God has me in this circumstance for a reason - for His glory and my good - and I'm trying to rest in that.

Hannah ;)

Monday, December 20, 2010

Crash and Burn

Well... so... I was doing so amazing...

Unfortunately, I've sorta had a bit of a crash and burn.

On Saturday, I felt pretty shaky and dizzy during my graduation. Probably wasn't the smartest day to take the lower dose of steroids that day, but that was how it worked out. Sunday I was tired, but okay. Still, every night, my body starts hurting really bad and I can't seem to get back on top of the pain. Last night was no exception, and I couldn't sleep.

I was supposed to work over an hour away from home early this morning, so my dear mommy very kindly offered to drive me. Good thing! This morning, I was so dizzy and nauseated and hurting and lightheaded and exhausted that I couldn't see or stand up straight. Don't tell my endocrine doctor... but yeah, I totally took a bunch of 'roids to get my body going again. And literally ate salt. And then I felt MUCH better. Most amazing of all, God allowed me to survive a long day at work. Oh, and I also ate half a jar of green olives. ;)

So, it is not unreasonable to say that the steroid taper is just not working out so well. I'm going to try again in a few days, but now I'm scared. ;( I mean, I took 1/6th less of my daily dosage every other day. That is a miniscule change. But somehow, my body is not likin' it.

I'm also having issues with the abscesses, I think - feeling like I have a UTI, needing to "poop" stuff all the time, having pain where the abscesses are. But I have no idea what to do, since we are choosing to not treat the abscesses unless I spike a fever.

I am incredibly frustrated with this situation, especially the having to run to the bathroom part. As I've said before, I've had two huge surgeries that were supposed to fix this problem. The surgeons have taken a very relaxed attitude about this issue. They act like it's normal and no big deal that I'm pooping blood and pus from an orifice I am not even supposed to have anymore. I am very frustrated that they continue to minimize my concerns... Dr A just smiles at me patronizingly and says, "This is normal. We need to not freak out about this. It will go away on its own. If for some reason it's still happening after Christmas, then we can talk about it again." I know that this is not normal. It doesn't take a medical degree to know that. And now it's Christmas, and it's still happening. Can't we fix this, folks?!?

At the same time, however, I am extremely reluctant to let them touch me ever again for another surgery. This situation is really challenging, and it's hard for me to have the correct attitude about it. I can no longer trust the surgeons... they have been wrong about so many things, yet they are unwilling to admit that they don't know the answers. And they don't listen to me or trust my judgement when I tell them that something's wrong with my body...

Okay, sorry. Rant is over. I want to be wise and make good decisions to take care of the body God has given me, but I don't want to have anger in my heart towards my doctors. And I am really struggling with that. So, my answer for now was to cancel my January appointment with Surgery. It conflicted with work and I just can't deal with them right now... we shall see what happens and what comes out of this ugly mess. My trust is in God, not my doctors... good thing, or else I would be pretty bitter! I was promised a cure when I started this surgery journey in October 2009... God has certainly taken me down a much different path than any of us would have anticipated, but it has all worked out for His glory and my good.

Hannah ;)

Saturday, December 18, 2010

18 December 2010

Five and one-half years.

Eleven semesters.

Over 20 hospital trips.

14 weeks spent in the hospital.

Innumerable doctor visits.

Dozens of missed classes, tests, assignments.

Several "Incomplete" grades.

One change of major.

Three classes dropped due to illness and surgery.

3.884 GPA.

18 December 2010: One graduation ceremony.

I am so thankful for everyone who has helped me get here today! Primarily, I am thankful to Jesus Christ! Without Him, I can do nothing. And I truly mean that.

Then, to all my professors, coaches, advisors, and staff whose constant encouragement and flexibility made this possible! They were willing to let me think outside the box and be creative to fulfill course requirements in unusual ways and at different times than the rest of the class. They accommodated me in innumerable ways and cared about me as a person, not just a number or a student.

Next, I'm thankful for my family, friends, roommates, and teammates for their help and support. I never would have made it without you all.

With equal parts of joy, relief, and thankfulness,

Hannah ;)

Friday, December 17, 2010

Prayers for Bryan

This week has proved to be challenging. I'm still really hurting, but I'm able to stay on top of it okay with my meds. Except at night. I'm having trouble getting comfortable at night. It's just so weird 'cause I can't even really pinpoint what exactly is wrong - just my whole body hurts. I dunno what it is, but I sure wish it would stop! ;) I went to the chiropractor, which helped a little bit, but not much.

My tummy is still doing so well! It hurts off and on some days, and I have a bit of nausea, but it is so much better!! I am really, truly eating at every meal, which is an accomplishment! Honestly, I still feel weird eating sometimes. After eating sporadically for the past several months, it seems like pure gluttony to eat three times a day. Often, I don't feel hungry even when I know I need to eat, which is weird. I'm still working on trying to get my body to tell me these things. ;)

I also WENT DOWN ON STEROIDS this week!! Just a quarter of a pill less - and I'm only taking the smaller dose every other day, but this is the first time that my body has felt ready to drop since August. I am sooo happy that my body is handling this okay so far! I still have unbelievably far to go until I'm on a "normal" steroid dosage, but hey, progress is progress! Praise God.

Please pray for my friend, Bryan Kervin. I've mentioned him before, I think - he was a fellow TCU athlete with UC. He had the J pouch surgeries. This week, he got pouchitis and wound up in the hospital for several days. He plays in the Blue Jay organization. He was supposed to go to spring training next month, and I don't know if this setback will rule out spring training for him or not... UC is a terrible disease. I know that life isn't fair, but this just so wrong. Bryan has worked so hard and overcome tremendous odds, only to have disease flare up yet again. It just breaks my heart for him, and for everyone else whose lives have been changed by UC. I know that God has used these circumstances for good in all of our lives, but we have simply GOT to find better medications for this disease. And we've got to find some way besides radical, life-altering surgery to treat us when medications fail.

I don't shamelessly plug very often, but please visit www.riseandconquer.org to see how Bryan is using UC to help others. I've been blessed by Rise and Conquer with hospital visits, flowers, and financial support to help me buy my meds. This is a foundation Bryan started that's dedicated to helping people with UC and Crohn's, a sister disease. I'm proud that I've been able to participate with them by raising funds for research and to send kids with these diseases to camp, and I've been personally helped by Rise and Conquer. Maybe one day, people won't have to suffer from these terrible diseases...

Hannah ;)

Sunday, December 12, 2010

Called by name, I am His

So... this week has been very tough. I've been really hurting - to the degree that I get very shaky. And I have not been sleeping well. When I can't sleep, I have a very difficult time functioning. And it was a long week at work. So... yeah. Tough week.

I went to the pain doctor on Wednesday - my appointment with Dr. Pain got rescheduled, so I was seeing a different doctor. He was a slightly bitter, middle-aged guy in cowboy boots. Cowboy Dr walked in and said, "Golly, girl, I was reading your chart... whatcha got left in your guts that they haven't taken out?" ;) We talked for a while, then he said, "Why're ya shakin' so much?" I told him I was really hurting this week for some reason. He gave me "a lil somethin' to get you through the holidays:" some VERY strong meds. I've never taken any pills that are this strong! Then he asked me if I'm on any meds for stress and anxiety. I told him that I wasn't particularly stressed or anxious. He replied, "Well, I would be if I were goin' through what you're goin' through!" I'm thankful that God has blessed me with supernatural peace, as well as such amazing support from my family and friends - without Him, I would not be able to handle this. And without y'all, it would be much harder.

Anyways, this week has been a challenge on a lot of levels. My stomach is doing well, which is wonderful, but I am so frustrated that I'm having so much pain again. Thankfully, my "holiday treat" meds help, but they are so strong that I can't really function if I take them. And it's hard because I was doing so well and not really needing my pills, and now I'm getting worse again and needing stronger stuff. Thankfully, next week will be much lighter, work wise, which will be helpful.

I'm also struggling mentally and spiritually with some stuff. I've been meditating on Isaiah 43:1-3- "Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, the Holy One of Israel, your Savior..."

It's amazing that I am God's - that I'm His child, that He redeemed me. But knowing God doesn't mean that our lives will be perfect. Being God's child does not protect us from having to face terrible and hard things. God acknowledges that we will have to walk through waters and rivers and fire. None of those things is pleasant to experience. But He promised that He will be with us. We will face troubles, but God will not allow them to overtake us, define us, or destroy us. We will emerge from the waters and the fire, and we will not be burned or drowned. We will remain His children, because He who called us is our Savior.

Why don't we need to be afraid? It's NOT because God won't allow anything bad to happen to us. He says "WHEN you pass through the waters," "WHEN your walk through the fire." He is essentially promising that very bad things WILL happen to us. The reason we don't need to fear is because of who God is. He is the God who redeemed us - bought us - and is our Savior. We are His, called by name, and He is with us.

Hannah ;)

Monday, December 6, 2010

Monday Morning Musings

This weekend has been a bit of a "crash" weekend. As you well know, everything I do must be done in the hardest way possible. So of course, in true Hannah form, I got a sore throat the night before my final, haha, so I've been trying to get rid of this little cold. Actually, it's kind of wonderful to be sick. Because I know that it will soon go away and I'll feel better!

Since Friday night, I've been hurting A LOT, which is not so fun. Makes it hard to sleep through the night. I've been pretty miserable. So, I've just been laying around with my heating pad and fuzzy blanket! Sadly, I have to go to work...ugggghhh it will be tough while I'm hurting this much. But I am thankful that I GET to go to work and that I'm able to do so.

Now that I'm done with physics, I'm going to finally start tackling the list of thank you notes I need to write from my hospital stuff. Gosh, you people are just so nice and send me cards and flowers and books and all kinds of stuff that it's gonna take me forever to catch up! ;) What a wonderful problem to have - I am so blessed!

The doctor appointments are finally starting to slow down... maybe 3 every two weeks, and I only have two more appointments between now and Christmas! I'll have just 3 doctors to see in January! Woot woot!

Hannah ;)

Friday, December 3, 2010

Thanksgiving

Aah... sorry it's been a while since I posted! ;) And sorry that the last post was sorta grouchy. Although, really, this blog is about honesty, so I figure if I'm not "real" on this blog, no one would read it! ;)

I had a WONDERFUL Thanksgiving. Truly wonderful, surrounded with every member of my family. And I ate. A ton. That was good, too. ;) I feel kind of weird saying how thankful I am to be able to do normal stuff like get up, get dressed, walk down the stairs, eat, sleep through the night, not be in the hospital, etc. This makes it sound like I wasn't thankful when I was not able to do those things. But I was still thankful even then, and being able to do all those things is just icing on the cake! God never changes. His love for me never changes. And He is still good, even in the hard times. He is just giving me extra things to smile about right now. ;)

I'm doing okay! My mom commented that I'm kind of having one symptom at a time. She's right. One day, my stomach won't empty all day. The next day, my stomach will be fine, but my joints and muscles will hurt really bad. The next day, that pain is better, but I'll be shaky and dizzy. It's really wonderful that it's not everything at the same time! But I do feel kind of like a hypochondriac since it's something different every day! ;)

Today I followed up with the ID doctor. I was a little frustrated. He types the whole time I'm talking but didn't actually listen to anything I said. I know that he is charting. Believe me, I understand computer charting. But you should still take time to listen and answer questions. He ordered new labs without looking at the old ones. Our entire interaction was only 5 or 6 sentences, then he left. Basically, the abscesses SHOULD be gone at this point, but we really can't know for sure without doing another CT scan (which we are hoping to be able to avoid, since I'm at serious risk because of the radiation exposure thing). Since I'm not spiking high fevers, he thinks I'm fine to be off antibiotics (YAY!). I have been running low grade fevers several days a week -like 99.5 - not a "real" fever, but enough to make me feel a little crummy! But this often happens to me when my autoimmune stuff is flaring, so it's hard to say what, if anything, is going on. And ID doctor really didn't answer any of my questions, which was annoying.

Happiest news of all and huge giving of thanks: today I finished the last final of the last class from last semester.

I am done with college.

I have finished my degree.

I wasn't sure that God would allow me to accomplish this goal!! I'm so incredibly thankful for His grace and perseverance and strength that He's given me to complete this last course. This spring was so humbling as I was completely unable to make it to class, focus, or study most of the time. I realize that this degree is truly a gift and provision from Him, not something that I did. I am so thankful to God and to everyone who's helped me get where I am now.

Not being one to sit still.... Up next: teaching myself Organic Chemistry II and studying for the MCAT.

Hannah ;)

Wednesday, November 24, 2010

One of Those Days

"For we know that the whole creation groans and suffers the pains of childbirth together until now... even we ourselves groan within ourselves..." Romans 8:22, 23.

Several people in my life are going through tremendous difficulties right now and I am just so sad for them.

Some days I am shocked and saddened at the sufferings of this world.

~Today is one of those days. ~


I'm in a lot of pain. I'm not sleeping. My white count is back up, my body is freaking out. Doctors are playing ping pong with me.

Some days I just want "out" of my body.

~Today is one of those days.~


"For I consider that the sufferings of this present life are not worthy to be compared with the glory that is to be revealed to us... 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 8:18, 28

I know in my head that God is working for the best.

Some days I just don't feel it, though.

~Today is one of those days. ~


I'm clinging to hope.

"For in hope we have been saved, but hope that is seen is not hope; for why does one also hope for what he sees? But if we hope for what we do not see, with perseverance we wait eagerly for it." Romans 8:24-25.

Hannah ;)

Tuesday, November 23, 2010

New Plan: Avoid the Rheumatologist!

Still reminding myself of what I said at the end of my last post... clinging to Christ and following HIS plan, not mine! I'm really tired, shaky, light headed, and hurting. I am feeling pretty awful, but I know He is good! ;)

My doctor's appointment yesterday was not so great. I am going to have to stop seeing Rheumy! Every time I do, she wants to send me to the ER! Don't worry; I said no. ;) I was super shaky when I was in her office and she was rather concerned about that. I tried to explain that this just happens sometimes and we don't know why and going to the hospital doesn't do any good, but she did not really get it, unfortunately. No, it isn't right, and it stinks that I have to live feeling like this, but they haven't found anything that helps when I feel this way!

I do appreciate that she takes my concerns so seriously. She told me that I know my body, and so if I know that something is "off" right now, we need to deal with it. Unfortunately, we're sorta at a loss for what's wrong and how to deal with it. The most obvious likely culprit is that the abscesses are flaring up, so she drew labs to check on that. If my labs come back looking bad, they will either add in another antibiotic (and it's one that makes me sick, sadly) or put in a PICC line and do more IV antibiotics. Not excited about either of those options, so hopefully the labs look okay!

So... Rheumy and I agreed that if I didn't go to the hospital that I had to touch base with the endocrine doctor, since the shaky/dizzy/sweaty thing seems to be endocrine related. So I called her today... it was quite unhelpful. Her response was basically, "You're fine. You've been shaky before. It's not an endocrine problem." I knew that she would say that, and I know it's not her fault... but it's frustrating enough to feel real crummy. It's even more frustrating when each doctor either points their finger at another specialist to say that it's their problem or won't address the problem since they don't think it's in their specialty.

The good thing from the appointment is that Rheumy gave me the green light for taking the anti inflammatories that help so much with my joints. She's always been super hesitant and frowned on any use of them for me, based on my history of UC. I guess now she figures I'm so messed up that NSAIDs can't really do much more damage, haha. ;)

I was reading one of my (many) favorite Psalms, Psalm 37. I was just reminded that I do not need to worry or fret, but instead I need to trust in the Lord! He is in control, and me getting worked up about things I cannot change is wrong! "Delight yourself in the Lord, and He will give you the desires of your heart. Commit your way to the Lord; trust in Him... Do not fret -- it leads only to evil." I also LOVE verses 23-24 "The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His hand." David, who wrote this Psalm, doesn't deny that we may face trouble. The Lord may allow us to struggle and even and stumble. But it is God who holds us up and supports us so that we never fall.

Hannah ;)

Sunday, November 21, 2010

Bunnies and Surpassing Value

My shirt today about sums it up...


This was my FAVORITE (if mildly obnoxious/borderline inappropriate) shirt to wear anytime I was in the hospital during my battle with Twitchy's pouchitis. Twitchy was was both literally and figuratively a continuous pain in the rear. In case you were wondering, the shirt was a gift... I'll letcha guess who gave it to me... Anyways, my doctors seemed to always get a kick out of it. They'd come in, ask how I was feeling, and I'd tell them, "Read my shirt!" ;)

Today I'm frustrated and sad... this weekend I've been really uncomfortable. ;(
***GROSS ALERT - you may wish to skip the next paragraph.***

Remember how I've had TWO major surgeries to make it so I wouldn't poop blood? Well... that continues to be a fail. ;) I feel like I have to have a bowel movement - or rather, an accident - every few minutes. You see, one of the abscesses has formed a fistula (connection) with what's left of my rectum and with other stuff down there, so nothing can heal up. The result is that I continuously have the feeling that I have to go to the bathroom as the abscess continues to drain. It's uncomfortable and annoying and gross. Dr. Sidekick called me this week, and we talked about it... unfortunately, there's really nothing that they can/want to do about this until they are sure that the infection from the abscesses is totally gone. Then, we will wait a few months and see if the connections close off on their own. If not, then we'd consider surgery to fix this. So it's gonna be a while before this goes away, and it will probably involve more unpleasant procedures.

In other news, we've officially decided that I will do the rest of my surgery follow ups with Dr. Sidekick instead of Dr. A. Dr. A has a sort of relaxed, hands-off, "let's see how you do on your own without any intervention" approach that I initially appreciated very much. But it hasn't really worked out well for me, since my body is so "different" and responds so unexpectedly to things. Between his philosophy and my body's wackiness, we haven't had very good chemistry. It just seems like he repeatedly has not taken my concerns seriously until things got very out of hand. I feel strangely guilty about making this small change, but I know it's the right decision for me to be a good steward of my body.

I'm also continuing to have adrenal issues and my pain is pretty bad. I just feel so yucky and tired and out of it. Tomorrow I am going to see the rheumatologist. It's good that I'm seeing someone. I feel like I'm starting to crash again, so I think our best plan is nipping this in the bud somehow before I really crash. I don't know how the nipping should take place... but maybe she will know! She is really good at coordinating all my doctors, so I'm hoping she can call the appropriate ones and they can come up with some sort of plan together. She also knows that I am frustrated with falling through the cracks with doctors. I was supposed to see her again this week, but her next available appointment was in the middle of January. A few days after I made that appointment, her nurse called and said Rheumy didn't want me to have to wait that long, so she's squeezing me in tomorrow. I appreciate that quite a bit! Hopefully she will have some brilliant ideas for how to fix me, or at least get me feeling a little bit better again! ;)

So, overall, I'm a little bit sad today. I'm getting a little nostalgic thinking about this time last year, when I was so hopeful about the future and about getting healthy. If there's one thing I've learned this year, it's that my hope simply cannot rest in this life or this body! If my hope were in those things, you should feel very sorry for me, because honestly, this body I have is not that great!

But this life is not an end unto itself. It is merely a means to know Christ. In Philippians 3, Paul says that he counted all things to be loss in view of the surpassing value of three things: knowing Christ Jesus, gaining Christ Jesus, and being found in Christ Jesus. How does that happen? God calls us to devalue everything this life has to offer. Jesus said that everyone who wishes to follow Him must deny himself and take up his cross - an instrument of death! That's scary. As you think about your own life, if God asked, would you really willingly to give up -- live contentedly without -- all the things you have? Possessions, luxuries, abilities, dreams, family, health, job, your life itself? Paul lost everything for Christ - his job, his respectability, his freedom, and eventually, his life. He wanted to know Christ in the fellowship of his sufferings, being conformed to His death. That's not a pretty picture. But it is so worth it to know, to be found in, and to gain Christ. And if we can only know Christ by losing our grip on things we have or want in this life, that loss is so insignificant in light of what we gain. How could I really want something God doesn't want me to have? Isn't He worth so much more? Although I would rather not be hurting and sick, I pray He continues to chip away at me and my desires until His will becomes what I want!

Hannah ;)

Friday, November 19, 2010

It's Friday!

Whew! Made it! ;)

It's Friday night, and it's been a long week! I was in SO MUCH pain all week... the chiropractor helped some for a little while, which was great, but my body has just been freaking out because I'm hurting - like heart racing, shaking, sweating, seeing spots. Not fun. My joints are hurting a lot and I'm having that weird all-over pain - I dunno if it's muscle pain or what, but it's unpleasant. My tummy has started dumping off and on again, too.

In happy news... the stomach pain from this weekend is much, much better. I have the pain on occasion, but it goes away after a little while. My nausea is, like, almost gone!! Today I didn't even take my nausea meds because I just didn't need them!! WOW! I have been eating a lot better (almost normally!!) and my weight is going back up, which is great!

I think that this week has been so bad because of the missed steroid dose... I know that sounds silly, but it really messes with my body! I took (shh... don't tell my endocrine doctor) an extra dose of 'roids today, which helped some. I'm frustrated because my body was doing SO WELL and not having adrenal issues until this week. Oh well...

Hannah ;)

Tuesday, November 16, 2010

25 Days

Well, it had been almost month since I had been in the hospital. I missed being there so much that I had to go back! Not really, but I did end up in the ER this weekend... oops.

On Friday, I went to the Infectious Disease doctor. He asked me to "tell my story, beginning with my diagnosis." I gave him the Reader's Digest version, but it was still a LONG story! Poor guy! Basically, the plan is to continue on antibiotics for a few more weeks while monitoring labs to ensure that everything is continuing in the right direction. He hopes I can get through these abscesses without doing more CT scans - I like that idea! He did more labs, and they all looked great!

Unfortunately, on Friday night I started having stomach pain. I think I had an obstruction. It continued on through Saturday afternoon, then improved as things started moving again. Then... it came back again. I was at my dear friend Heidi's (check out her excellent blog here) and realized I was going to need some medical attention. Elizabeth very kindly followed me to the local ER and sat with me til my mommy came. The ER doctor wasn't the sharpest scalpel in the OR, so to speak, but we both knew I just needed some pain relief and hydration, not a full work up. He did some labs, and my white count had jumped back up a bit. Nothing terribly high, but higher than it had been the day before. After some pain meds and fluids, I started feeling very drugged but much better, so I went home. I spent Sunday in the fetal position with my heating pad, bottle of pain pills, stuffed puppy from the Links, and fuzzy blanket from Melinda!

I had to work on Monday and today, which was interesting, but I started to feel better by Monday afternoon.

Monday was made even more interesting by a little surprise experiment to see how I would do if I skipped my 11 am dose of steroids. I forgot to bring that pill (one of three daily doses) to work. I did okay, just was a little tired and dizzy. I think the missed dose had a delayed effect, as this afternoon at work, I had a full blown adrenal episode, complete with shaking, sweating, dizziness and very clouded thinking. Bummer. Thankfully, it only lasted an hour, but it was extremely tough to work through and I remember how bad this stuff stinks! ;)

Tonight I'm having incredibly bad muscle and joint pain. My joints have been flaring up (and the new thing is that my entire rib cage hurts - not just my sternum), but this is even more than that. When the adrenal stuff gets worse, my pain goes way out of control. All this from one missed dose!! Hopefully it settles down soon. This makes me VERY nervous about the steroid tapering I'm supposed to to soon.

My GI doctor called me last night. He's concerned about scar tissue and adhesions in my intestines as well as in my urinary system. I continue to have pain and troubles with urination, which is concerning to him. Hopefully it's nothing serious and I'm hoping it's just nerves healing from surgery. He said, "I really hope we do not have to do more surgery on you." I told him I sure hope not; I don't ever want surgery again! My body seems to really hate surgery, and he agrees that I've had an incredibly rough time. If the abdominal pain I had this weekend returns, he wants me to text him (no kidding... who texts their doctor, though? Oh my life...) and he will set up some tests that need to be run. Instead of CT scans, we will do abdominal ultrasounds in the future.

I'm a little concerned that I am having problems again. I really hope that the abdominal pain was just some freak episode that won't ever return. I hope that the adrenal stuff and the severe pain I'm having tonight are related to the missed pill and will resolve. Tomorrow I'm going to see the chiropractor, so hopefully he can help with the pain... I know that God is in control of my life and this situation, so I'm not worried, but of course I hope that I will feel better again soon! And I'm thankful for my 25 hospital-free days!

Hannah ;)

Thursday, November 11, 2010

It is Well!

Well, another week is nearly gone! I've been super busy, so I haven't been on the computer much. Sorry! ;) I took another physics test... all I have left is the final, then I'm DONE WITH MY COLLEGE DEGREE! I will hopefully take the final just after Thanksgiving. It is so amazing to be able to focus and study and stuff. My brain is working much better these days. I am so thankful.

This week has been okay. It's been harder. My arthritis is definitely flaring, so my joints are really stiff and achey and I am very tired. I've been a little more nauseated. But I still made it through work! It's amazing. It's hard, but God is allowing me to keep going. In good news, my abscess pain is much improved. I had labs done on Tuesday (and there's a really good story that goes along with this lab draw, but that's for another post)... and guess what? My white count is NORMAL!!! This is an excellent sign - means the antibiotics are working and I'm beating the abscesses! Praise God.

On Sunday, I barely made it to church. It was one of those mornings where I just couldn't get moving (side note: pretty every morning was like this all spring and summer! So no complaints!). I finally was able to limp to the tub and soak for a while and that loosened up my joints enough for me to make it to church! As I sat there, the pastor asked us to open up our Bibles, and he read "my" hope passage - Romans 5:1-11. Talk about full circle... I thought of all those long nights of pain in the hospital when I'd quote those verses over and over again in my head. I thought of all of you who have memorized with me.

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." The word "perseverance" is the same word "endurance," used in James 1, one of my other favorite passages. It says, "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing." Our trials produce endurance, which completes us and equips us with greater faith, like I Peter 1 says - "You are distressed by various trials, so that the proof of your faith, being more precious than gold, which is perishable, even thought tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ."

Romans 5 continues, "And hope does NOT disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Nothing we can do will change God's love for us, because nothing we did made God love us in the first place! What a blessing to know that God's love for us will NEVER change, since he loved us when we were helplessly lost. And what joy to read these verses along with so many brothers and sisters who've prayed for me and memorized with me... SO COOL!

Then, later that morning, we sang the hymn, "It is well with my soul." The lyrics say, "Whatever my lot/ Thou hast taught me to say/ It is well, it is well with my soul." How incredibly true that is... What God asks me to face each day is irrelevant in light of what He has already done for me: "That Christ has regarded my helpless estate/ and has shed His own blood for my soul."

Hannah ;)

Sunday, November 7, 2010

More Drs... But Good Ones ;)

So... I love the name suggestions for my abscesses... keep them coming... so far I like the "Ab Four" the best, although it's hard for me to choose! ;) The abscesses are still there... the pain is better, but I'm bleeding and stuff and I'm worried they will eventually have to do some surgery to fix all that, but I don't have to cross that bridge til after Christmas! Hopefully the ID Dr will have some good ideas when I see him on Friday.

I saw Dr. Pain on Thursday. Actually, I saw his resident, Skinny Dude, but Dr. Pain still came in and gave me a big hug. They were all super happy that I'm doing well enough to be working again, and I sometimes even feel like myself again! Although I'm still in pain, it is so much better, so I'm taking less and less of the narcotic pain meds. ;) Yay!

I am having a lot of muscle pain, so we're tweaking meds to make it better. Last time, Dr. Pain started me on anti-inflammatories, which have been AMAZING for my joints. I know the GI guys really want me to NOT take NSAIDSs, but this one is supposed to be safer on the GI system. And they make a huge difference in my ability to function. To minimize any long term side effects, Skinny Dude suggested that I try doing 5 days on, 2 days off. I skipped a day, and my joints are letting me know about it - I am SO STIFF and achey now. I feel like I have the flu and I haven't been able to straighten my knees since Friday. Boo. I think that the joints are flaring up from the weather anyways (and... I wore heels at a wedding on Friday), and skipping didn't help. He told me to see if I could tolerate not taking it... maybe my answer is no... but I will try again next week!

We also talked about the gastroparesis and narcotics issue. My nausea has improved quite a bit with the antibiotics and anti fungals, leading me to think that the problem was bacterial/fungal overgrowth, not gastroparesis. But anyways, I asked about it. Skinny Dude thought that since things are going better with the nausea and I'm doing well from a pain perspective that it wasn't necessary to make any changes. I'm taking a reasonable amount of pain meds and the nausea isn't affecting me nearly as much anymore. So, basically, I can keep taking the meds as needed because it seems like the nausea issue is getting better.

Overall, my pain is under waaaaaay better control most of the time and I am living without thinking too much about it. This is the most wonderful thing imaginable. It has been so unbelievably bad and so unbearable for such a long time. It is the most amazing relief to NOT be in horrible pain all the time. So I raved to the Pain Drs a little bit and they beamed with joy. They are the only doctors I actually get excited to go see. Any day you walk out of a doctor's office with prescriptions for anti-inflammatories, muscle relaxants, and sleeping medicine is a good day in my book. ;)

Then, I saw Endocrine Dr. I hadn't seen her since July... so I had to fill in a lot of gaps for her! So much has happened since then! I was worried she'd make me taper down again on steroids. Obviously I want to get off them, but I finally am doing well and feeling okay, so I'm super hesitant to make any changes! Don't want to rock the boat! She agreed that we should not make any changes until the abscesses are gone and my white count is normalized. Then, we will cut back a tiny bit on one of the three doses. I will alternate, taking the smaller dose one day, and my normal dose the next day. After a few weeks, if all goes well, I can take the smaller dose every day. Long term... she indicated that she does not think that I will be able to get off steroids entirely. That was disappointing to hear. But she would like to try to get me down to half the dosage I'm at right now. This is a very long term sort of thing. It will take years to see where my body will settle out. I don't really care... I'm just happy to NOT be having adrenal issues right now! When my adrenal stuff is acting up, my pain is so much worse, my GI tract stops absorbing, I get so dehydrated and sick and shaky and literally can't move. If I have to take steroids forever to prevent that, so be it!

Right now, I still feel okay - sometimes I even feel good! I'm still nauseated and hurting, but it's at a level where I can handle it. I had issues with blockages three times this week, which is a big bummer, since that problem had gone away for a while after surgery. But they haven't been too painful, and they always pass on their own after a few hours. BUT - I am functional almost all the time. It is so incredible to be able to shower and get dressed and not have to rest for an hour or two afterwards. It's amazing to be able to do multiple things in one day - like run errands AND go hang out with friends. Sometimes I just feel like a normal person and don't have to think about how I'm feeling!! I'm eating really well. This is incredible. I am so thankful for all these huge blessings! I cannot take them for granted.

I am a little frustrated with keeping track of all the pills I have to take - I'm on 11 different meds, most of which I have to take three times a day - but they are all WORKING to keep my body up and running and comfortable, so it's really a small price to pay to be functional!

Hannah ;)

Wednesday, November 3, 2010

A Dilemma

Today I had my appointment with Dr Sidekick (in surgery). So... over this weekend, I started having all my "abscess symptoms" again. It started to really hurt when I would pee... then Monday night, my stomach started to hurt really bad again. It hurt all day Tuesday and was awful this morning - like considering leaving work and checking myself into the ER awful. Thankfully, it started feeling much better, but I figured it was a good thing I was going to see the surgery people today!

It was kind of a sad appointment. To quote, I am in a "bad and complex situation" with my abscesses. Since my white count is still elevated, and especially since I am feeling bad again, I have to continue on antibiotics. The abscesses are still there, we guess. I got to see my scans today (Side Note: It is always mildly disconcerting and uncomfortable for your doctor to show you your insides. "See that right there? Those are your ovaries!"). The abscesses aren't really big enough and they are too deep in my body for them to be able to do anything to them (drain them or something), but my immune system is having a very tough time cleaning them up, apparently. It seems this is going to take a really long time and a ton of antibiotics to resolve... And antibiotics may or may not do the trick. Therein lies the dilemma.

We discussed re-scanning to see if the abscesses are growing or shrinking or what, but I REALLY want to avoid more scans because a). I don't really want cancer from all these CT scans, b). I don't really want to have the contrast dye again because I'm now allergic to it! and c) I don't want to mess up my poor body by taking all the steroids that would be necessary to keep my body from reacting to the dye. We talked about other scanning options and treatment options. We could do an MRI, but it's not as helpful for a number of reasons. If I continue to get worse, we may have to consider IV antibiotics or even surgery, but we really don't want to pursue ANY of those right now. ;)

So, I ended up with a referral to Infectious Disease. They are the best people to decide what antibiotics I should take, and how long I should take them. And they may have new ideas for treating the abscesses. In the meantime, I am supposed to go to the hospital if anything gets worse. Booooooo. Let's pray nothing gets worse!!

I'm still doing pretty well! My stomach has been killing me for the past few days, and I had some adrenal issues on Sunday, but really, overall, I feel so much better that I can't complain! I have energy and stamina like I haven't had since... just after surgery #1! I'm eating really well, which is so incredible! I am feeling more and more comfortable around food and feeling hungry most days! I still have nausea, but it is well controlled when I take my medicine.

Dr Sidekick may think I'm in a bit of a pickle, but really, my dilemma is... should I name my abscesses? I've named everything else so far... Honestly, though, it's always weird to go to the doctor and hear that there is no timeline or schedule or anything for if/when things will get better. I appreciate Dr Sidekick's humility to admit that they don't know how long the abscesses will take to go away, or that they don't know if my body will be able to beat them on its own. He also commented that, for whatever reason, my body just doesn't follow the rules. No one wants to hear that kind of stuff. That's why it's so reassuring and comforting to know that God knows me, inside and out. He knit me together. And I can totally trust in Him to do what's best in His perfect time.

Hannah ;)

Saturday, October 30, 2010

STILL Good Days! ;)

Well, it's the end of another good week! ;) I'm so happy! I am still feeling tired, but it's just "normal" tiredness, not unable-to-get-out-of bed, bone deep fatigue. I am going to work and just being a normal person and stuff... it's so wonderful. I don't know how people take this stuff for granted. I've gotten out of bed every single morning this week, no problem. IT'S SO AMAZING! God is so very good. Not just in the "good" times. All the time. But He's so very kind to bless me with these good times!

I still have really bad nausea from time to time, but it's not constant and my meds are actually helping. I still have pain from the abscesses, but it is definitely better than it was. My joints are stiff and hurt, but it's not terrible! It's all pretty manageable!

I had a grand total of ZERO doctor's appointments this week, which was FANTASTIC. Although I got a break from the doctor this week, I did have to go get labs. My white count is still remarkably elevated, but it is improved from when I was discharged last Monday. They will probably recheck it in a week to make sure it's headed in the right direction (that would be down). Of course, to make up for this week, I have 3 doctors to visit this coming week, but the "time off" was nice. ;)

Please be in prayer for wisdom... my family and I have some questions that need to be answered regarding who is in charge of my care... I have a couple 5 or so specialists, all of whom are very good, but very specialized and only treat a narrow window of problems. My unique issues sometimes fall outside of their areas or encompass multiple areas, so it's really tough to get a doctor who will give me a straight answer or actually treats my problems. What often happens is that Endocrinology sends me to GI for this problem, which GI thinks is an endocrine problem, and therefore won't treat. Since endocrinology sent me to GI, endocrinology won't treat it either. Basically, I get "ping-ponged" back and forth without ever getting any help, because no specialty will claim me. The seemingly obvious solution, getting an internist, a sort of general doctor, has been less than helpful. My problems are beyond their scope, so they don't treat me either - they just bounce me back to the specialists. This is a huge headache and even gets dangerous for me, since no one is actually addressing major issues. So this week we are hoping to sort of define who is in charge/will take responsibility for me. I mean, hopefully, this will become a moot point, as ideally I'll continue to get better each day, but to be wise, we need to figure out a better plan than the current bouncing around.

Hannah ;)

Monday, October 25, 2010

Yes, Better Days.

No question mark this time... I am feeling the best I've felt since January.

I still don't feel "good," but I don't want to die, either, so I'll take it!! My nausea and stomach pain are definitely better. Instead of constant nausea, I'm eating MUCH better and only need my nausea meds after I eat. My joints and muscles are unhappy, but it's manageable! I'm very tired but my body isn't shutting down or anything. NO adrenal issues lately. None. I like this. I am functioning. It's amazing!! I am so thankful.

Not being one to let better days go to waste, I worked something like 35 hours last week between Tuesday and Friday (okay, I did NOT do this on purpose. It was NOT my choice. And I was exhausted to the point of tears every day). But, here's some other proof that I am feeling better:
  • Squirt made his diving debut this weekend as I threw on a swim suit and launched myself off the diving board a time or 5 at the alumni meet. Side note: fellow ostomates of the world: you can dive, even off a 5 m platform, with your bag on. And it will not come off. Although my teammate kindly offered to take the blame and say he'd had an accident in the pool if something happened. ;P Also, if you're skinny, and wear a patterned swim suit, your stoma and bag are virtually invisible. Even the few teammates who know Squirt's there came up to ask me if I still had the bag, 'cause they couldn't see it! I can't jump at all (heck, I can barely climb up the ladder), but I did some line ups (basically falling off the board and landing head-first) and Loud and I did our world-famous falling back flips off 5 m. I loved hanging out with the divers and remembering what good times we had. Diving was such a huge part of our lives. Ostomy supplies: $110.00/month. Swim suit: $35.00. The feeling of ripping an entry (hitting the water just right so that you make no splash and make a "POP" noise when you enter): priceless.
  • I made it to church yesterday. It's been a while! The kids look so tall! There are new buildings and rooms! ;)
  • I made up one of my physics tests today. One down, two more to go... then I will have the most expensive piece of paper ever.* I am thankful to be able to do all this stuff, although I may totally crash here in about three seconds. This last week has been more action-packed than the whole summer put together. I am absolutely thankful for every single moment I have of feeling decent, and I don't want to waste a second of it!
In short... I cannot believe that this is happening. Last week, for the first time, the thought entered my mind that maybe, just maybe, this last surgery WAS actually a good idea. That maybe I will get BETTER! I still don't feel good or normal, whatever that means. I know my body will never be the way it used to be. If nothing else, I'm down 7.5 feet of tube. I'm told I will continue to have chronic pain and nausea and fatigue. BUT... right now, everything is at a level where I can function! Yaaaaay! Yeah, I have to take at least 11 different meds more than 6 times a day to keep it that way, but heh, whatevs.

Hannah ;)

*upon further reflection, my discharge papers from the 4-week long surgery/hospitalization are gonna be much more expensive than my college diploma.

Wednesday, October 20, 2010

Better Days?

Happy news: my abdominal pain is, like, waaaaay improved. Pretty sure the majority of it is related to the abscesses, so it's getting better as the infection dies! I still have some amount of discomfort, but it's so much less and I think it's primarily from the antibiotics. My nausea is also improving. I'm still taking my anti-nausea stuff all the time, but it's actually working and I am starting to be able to eat a little more!

Okay, about the eating thing... I think I have a weird mental block about eating. Eating isn't really pleasurable for me anymore. I just associate it with nausea and pain, and I don't ever really feel hungry. So even when I'm feeling good (not super nauseated, not so much pain), it's still hard for me to eat. I have to distract myself and not think about what I'm doing while I'm eating. And if someone comments about the fact that I'm eating or asks me how the food is "going down," I start overthinking it, get totally psyched out, can't eat, and start feeling sick. I know. I'm a nut job. But I'm working on it, and I think it's improving. I just have this weird love/hate relationship with food. I love to think about food and I remember how fun cooking and eating can be. It's such a social event, and so when you don't want to eat, it's very isolating. Long story short, eating is not fun right now. But hopefully I'll get back there one of these days! I do get very proud of myself when I can/do eat, and this whole UC experience has given me a much greater empathy and understanding for people with eating disorders!

I'm really, truly doing better overall! I am just so so worn out from the last two days at work, but I'm making it and functioning! My joints are flaring up. They aren't horribly painful, just really weak, so they randomly give out, which is amusing (or not). Despite being so tired, I am having trouble sleeping because I'm hurting, which is a real bummer. But during the day, my pain is so much better overall, even though I'm cutting back on my pain meds (sorry, GI doctors, maybe I'm destroying my gastroparetic stomach, but I haven't stopped them yet. It's this weird thing I have where I'd rather not be incapacitated by horrible pain). The improved pain is truly wonderful, and I am so thankful! Hopefully this is an upward trend that will continue!

Hannah ;)

Monday, October 18, 2010

Home Again... Think it Will "Stick" This Time?

So... I'm HOME! Just got here. ;)

My white count jumped back up this morning, so there was some talk of keeping me there or sending me home with my PICC line in and on IV antibiotics, but Infectious Disease came up with a high-powered antibiotic cocktail for me to take. Of course, those designer antibiotics are approximately equivalent in cost to putting a down payment on a house, but what am I going to do? Not take them and let the infection kill me? ;)

I'm struggling right now with my "reality." I started this new job about two weeks ago... but if you'll recall, I've spent a fair amount of those two weeks in the hospital. They are willing to work with me, but are not so impressed with me so far. I'm not so impressed with me so far. I just don't know what to tell them. They have shifts to cover, they have a business to run. I can't say with any certainty that this will be the last time I'll be in the hospital or have "sick days." And that isn't fair to them, but I can't do anything about it. I know that me being unreliable makes them unreliable, and they can't run a business that way. So I don't know what to do or what to say. But I'm sad. I hate that I put everyone around me out with my disease: people at school, family, friends, people at work. I'm frustrated with letting people down... with my body letting me down.

Honestly, though, I am not in control of any of this. God is. And His plans will succeed.. whether I am able to keep this job or not, I know His plans will be accomplished. It's truly outside of my control, and I just need to trust Him! Last night, I was reading one of my favorite passages, Matthew 5 and 6. Such a great reminder that God honors meekness, humility, brokenness... things we tend to dislike and truly try to avoid. God calls us to not worry about tomorrow. He takes care of even the birds and the flowers... how much more will He care for us?

Hannah ;)

Saturday, October 16, 2010

Barrel of Monkeys

I'm still in the hospital... but hoping to go home Sunday or Monday. My room, therefore, won't be as festooned as it was, but I did put up a few comics (thanks, Araenae!). I also received a barrel of monkeys from the Trevetts, which are now hanging on my blinds, much to everyone's amusement.

Thank you so much for all your prayers about the doctors... there has been considerable doctor drama. Please keep them up... I continue to hope for the day that I won't have to deal with doctors and the politics of hospitals.

GI Dr came and saw me on Thursday. He is truly wonderful and I'm very thankful for him and all his compatriots, who are fantastic. His take was that maybe I have a surgical problem, maybe I don't, but at any rate, clearly something is very wrong, and he wants to find out what it was and how to make me feel better. I can work with that! ;)

Most of the testing is for the nausea and inability to eat issue. Certainly my pain can cause nausea, as well as whatever's going on with the abscesses. They are also running tests to check for different infections right now. But basically they think that my problem is gastroparesis. They diagnosed me with that this summer when I had a test to see if I had an obstruction. Essentially, they think my stomach does not churn or empty properly - it's very slow. This can be caused by an infection, medication, or autoimmune issues. So there's lots of reasons why I might have it.

So, to treat it, they want me to stop all narcotic pain medicines...which I would love to be able to do, and I will try, but I take them because I'm IN PAIN! My pain has gone out of control several times this spring and summer and landed me in the hospital. It really does a number on my body and I feel like I've just gotten to a point where I am sleeping and functioning well with the pain. I don't wanna mess up my body now. But, we will have to find other things I can do to help with pain. I am not supposed to take NSAIDs (anti inflammatories like Advil) because of my UC history. So I'm not sure exactly how this will play out. Also, they want me to start a medicine that helps with stomach motility. I already took it for a while this summer, and it didn't do anything at all. I will try it again, but I have no confidence that it will actually help. I realize I sound super negative about all this, and I'm trying to have a good attitude. I want to give the treatments a fair shot, but I'm really worried about putting myself in a lot of pain... and that it won't actually help my nausea. And honestly, if I had to choose (which I may have to!), I'd rather never be able to eat than be in that much pain again.

The surgery people think the abscesses are causing the high white count and making me feel bad. I've been on IV antibiotics, which are starting to knock the WBCs down and making me feel less "run over." All the doctors (except for Dr. A) think that the abscesses are causing my abdominal pain, since it's the worst in the exact spot where the abscesses are. I continue to have some frustrations with Dr. A not taking me seriously and acting like I'm blowing stuff out of proportion... but I keep reminding myself that it's my body and I know when things aren't right. I also remind myself that he dismissed my pouchitis symptoms for three months before finally agreeing to scope me and then was shocked to see that I had terrible pouchitis.

I'm still bleeding, but it's been a little bit less. The scans show that my body has formed a fistula between one of the abscesses and my bottom, so it's not healing. Dr. A said that I could expect that to continue for 2-3 more MONTHS. He told me to stop freaking out if I'm bleeding a little bit. I told him I'm not freaking out; I've been bleeding internally since 2006! I'm just downright irritated that he's operated on me twice and still can't fix the bleeding problem. I know it's a completely different cause now, but it still feels annoying and uncomfortable and shouldn't be happening. He wants to give my body a chance to heal itself and not do more invasive stuff unless it's absolutely necessary. I absolutely agree about not doing invasive stuff unless needed, but I am NOT excited about putting up with this til Christmas at least.

I know I sound grouchy in this post... it's because I am. I feel like a jerk because I question the doctors and have stopped being okay with the mistakes that have been made. I know I didn't do anything sinful or wrong and it's all done without meanness, but I still feel bad. I'm trying to decide what the right attitude in all this should be. I know that in my heart, I am very angry and bitter about some of the stuff that's happened. I'm trying to forgive them from my heart. However, they need to be held accountable for their errors... Please pray that I will love them like Christ loves me and find the balance to unapologetically ask for the care I need. Life right now is like wrestling a barrel of monkeys, but hopefully things will get better... I feel like we're on the right track.

Hannah ;)

Thursday, October 14, 2010

Why I Love Squirt... On His First Birthday

WARNING: A POOP POST.
YOU MAY WISH TO JUST COME BACK TOMORROW FOR A MORE APPROPRIATE POST.


One year ago today, I had my colon removed due to a severe flare of Ulcerative Colitis that was not responding to outrageously high doses of Remicade or steroids. They removed my colon and appendix and created a J pouch out of the end of my small intestine. The J pouch was an internal pouch sewed down into my pelvis and attached to my anus where my colon used to be. The J pouch was supposed to serve as my "new colon" one day. To divert the flow of my poop while the J pouch healed, I was given an ileostomy. An ileostomy is when they pull the end of your intestine through your stomach wall. My poop flows more or less continuously into a bag I wear over the ileostomy, who I christened Squirt (for obvious reasons). Of course, you all know the end of this story... the J pouch unfortunately got very sick, and was removed on August 23, and Squirt was with me to stay...

I wrote this list back in January... and on this day, Squirt's first birthday (the anniversary of my first surgery. We won't even talk about my colon. Haven't missed THAT worthless organ for a single day!), I want to honor the little guy with a post all about him. Yes, he's weird. Yes, I'd prefer to not have him. Yes, he can be inconvenient, gross, and... noisy. But all in all, he can't help any of those things, and I regard him with mixed respect, disgust... and a weird sort of affection. So here's why I love Squirt:
  • I get packages in the mail! Yeah, sure, they are just bags and stuff I have to mail order for Squirt, but it's SO fun to get a box in the mail! I love it.
  • I get to choose when I go to the bathroom to "poop" (empty Squirt's bag). I used to almost have accidents multiple times a day since my colon was so inflamed and worthless. I had this weird radar thing where you could have blindfolded me, taken me to any public place, spun me around, let me go... and I would still have been able to find the bathroom within 15 seconds. This is a skill I've heard most people with UC develop. My radar is fading now, as the urgent need is simply not there anymore!
  • Also, pooping hurt. A lot. No longer! I don't feel a thing!
  • I don't have to reach behind me to wipe. It's all conveniently located in front. I can see what I'm doing when I empty the bag, unlike you "back poopers."
  • It wasn't me that passed gas. It all collects in Squirt's bag. ;) So no one can blame me.
  • If I wanted to, I could be a terrorist and blow up planes by breaking the whole "3 oz" liquid rule by filling my bag with explosives.
  • I have a built-in excuse out of every situation. "I need to go play with Squirt" - no one wants to ask more. ;) Haha.
  • No chance of: hemorrhoids, constipation (although, not that that was EVER an issue for a UC sufferer!), colon cancer, colonoscopies, or rectal exams...
Happy birthday, Squirt. If I'm the motorcycle, you're the side car. You're the slightly annoying constant companion I couldn't live without. Many happy returns.

Hannah ;)

Wednesday, October 13, 2010

Home, Sweet Home (?)

So... after Sunday night, I spent all day inpatient Monday with doctors coming in and out telling me that they didn't know what to do about my abscesses and stuff, but my options did not look good. Dr. A would make the final call. Finally, that evening, Dr. A came in... and told me my CT looked fine. The abscesses were too small to do anything about, and he didn't plan to treat my high white count with antibiotics. He would keep me overnight and see how I was in the morning, then send me home. Since there didn't seem to be a point in staying, I asked if I could leave, and he agreed. So off I went!

Tuesday I went to work in the afternoon, and God orchestrated an appointment with my Rheumatologist. Her office called kinda out of the blue to move up my appointment (which was at the end of this month), since I wasn't doing great. I didn't want to have to ask off of work, so I declined. Then, I prayed about it and decided that seeing her was probably more important, so I called back and accepted the offer! The Lord truly worked through this appointment and she wins the Wonderful Doctor of the Year award!

She saw me today. First, I made her nurse cry (on the forms you have to fill out, you have to write about any hospitalizations since your last office visit. So... yeah. She's a wonderful, grandmotherly type of nurse, wanted to hear the whole story, and was so sad for me). Then the Rheumy came in and started looking at my CT and labs from this weekend. All I really wanted to know was if I could restart my superwoman shots, but she was highly concerned with the sky high WBCs and said NO WAY, and we need to figure out what infection is causing this. She stayed in the room with me for over an hour. She referred me to Infectious Disease. She spoke with GI Dr. Finally, she paged Dr. A and let him know her concerns. She also hugged me and told me things were gonna get better. She was very concerned about how I looked and that I'm having increased abdominal pain in the exact area where the abscesses are.

So... she sent me back to the hospital. I've also been bleeding more (which is probably the abscesses trying to drain). She said that the abscesses are not going to go away if I ignore them and that it's better to deal with them now, as opposed to waiting until I'm terribly ill.

So, get this: I'm back on 3 North with "my" nurses... in MY exact room!! So you know where to find me. If I have to be in the hospital (and believe me, tears were shed over this decision), there's no other place I'd rather be. The nurses have already brought me a six pack of Sprite and a few have come in just to give me hugs. ;) I'm getting spoiled.

Please, please pray that this hospitalization leads to some answers. Please pray that my parents and I would be wise and firm and kind without compromising on what's acceptable and what's not. This is an incredibly tough situation that has become quite political. Since I have such a complicated history and "different" anatomy, most doctors don't feel comfortable treating me, so they defer to Dr. A. Dr. A is a rather hands-off guy who doesn't really want to treat anything if there are no surgical problems. So... that's why I ended up getting sent home Monday night without any resolution of my problems. I do not want this to happen again. I know that something's not right with my body. I should not have constant nausea and worsening pain. We need to get this figured out. If Dr. A is unwilling/unable to treat the issues, then I need him to call in someone who can. I'm truly not trying to be bratty or seek attention... I just wanna feel better!

So... the Romans 5:1-11 challenge is still goin, since I have turned out to be the world's slowest memorizer! I still do not have verse 11 down, so I figure God still has a lot for me to learn from His words in this passage! Please continue to memorize, or if you're done (and huge congratulations to you!!), continue to practice saying these verses. Share them with someone at work. Say them to a friend or family member. God's word is so powerful! And what amazing truths about our great God - who has justified and given peace and hope to His enemies.

Hannah ;)

Sunday, October 10, 2010

Life Was Just Getting Too Boring

Remember the end of yesterday's post, about how I had this high fever? About that... last night I felt pretty crummy, and today I woke up with a 102 fever and started bleeding a LOT from my backside. By late afternoon, I called the doctor, who told me to come to the hospital. Yeah... so here I am, back in the hospital. Dr. Sidekick very nicely came in on a Sunday night to see me. He was concerned that the fluid collection was back.

We did a scan to see what's up. I've had a million CT scans; over 7 in the last YEAR, so we've been trying to minimize them, but it is always for a much-needed reason, so we keep ending up doing more and more scans. Anyways, if I don't die of all my autoimmune stuff, I'll probably die of cancer from all the radiation I've had. Today while I was in the scanner, my stomach started hurting just terribly. Then my tongue started itching. Then the scan was over. They pulled me out of the scanner, and I started screaming because my stomach hurt so much. The CT guy called my nurse to see if I could get some medicine. Then my lips started swelling up, I broke out in hives, and started throwing up. So they gave me a bunch of benadryl... it was an exciting time. Thankfully, the benadryl worked quickly to get the reaction under control. A few rounds of pain meds, and my stomach pain settled down, too. I think the contrast or the reaction irritated my tummy. Add IV contrast to my list of allergies, please!! I was just trying to keep the CT people on their toes!

The CT showed several abscesses/areas of fluid collection. My white count is very high. The admitting doctor thought they might have to put in more drains, do surgery, or possibly do more antibiotics - although the antibiotics were not effective for my abscess. Hmm.. is there another option? None of those sound that fun to me! ;) In a way, though, I am thankful... maybe these abscesses are the reason for my nausea and stomach pain. Maybe they can be treated, and then I'll feel better!! I am not happy to be back in the hospital (especially since I'm not on my favorite floor this time), but I pray that God will use me as a light here! Please pray for patience and strength for my family - that they would entrust this situation to the Lord - and for wisdom for the doctors. And hopefully, for rest and less pain for me!

Hannah ;)

Saturday, October 9, 2010

BUH-Bye, Mr. Clean!!

Notice anything different about me?? That's right; Mr. Clean bit the dust yesterday! I am no longer trying to hide two feet of tubing and a bulb under all my clothes. Now I'm just hiding some wicked awesome scars and a bag of poop and a bandage where Mr. Clean used to be.

I almost didn't get Mr. Clean out. I drove an hour to the clinic, only to find out that Dr. A had been called into emergency surgery! Of course, I didn't want to bother him with a little thing like a drain removal while he's cutting on someone to save their life! So I said I'd wait. The nurse asked if I could come back on Tuesday morning to have it removed. I reassured her that that wouldn't be necessary; I could just pull the drain out myself. She started singing a different tune and agreed to page Dr. Sidekick (Dr. A's sub, who I saw in the hospital and who ran the CT that found the abscess to begin with. Elizabeth carbon dated him and found him to be about 13 years old. She's right, but he must be a little older, since he has a wedding ring and is a "real" doctor [this is as opposed to the "fake" doctors - the interns and residents who wouldn't know an ileoanal anastamosis if it hit them between the eyes]).

Dr. Sidekick, thankfully, was free and came up to the clinic for me! Mr. Clean came out (which felt... weird) and Dr. Sidekick told me to watch out for fevers and stomach pains that would indicate that more fluid is accumulating. This would be very bad. He also explained to me what's happening when I'm "pooping" blood (sorry, not sure how else to put it). They sewed me shut, but since I had that massive fluid collection and infection in my abdomen, nothing has closed up and healed properly yet. My slightly immunosuppressed state also is likely contributing to this. The abscess is basically also draining down through the not-healed area. So long story short... I can expect the bleeding to continue for several weeks. Awesome. But I was very thankful to finally get a satisfactory explanation for what is happening.

Here's the irony to me: why did I had this surgery? Hm... To make it so I wouldn't poop blood. Guess what? 6 weeks, one major surgery, an ICU stay, several blood transfusions, 3 weeks on TPN, 1 jumbo-sized abscess, and 1 drain placement later... I am still running to the bathroom to poop blood. I'm supposed to be all sewed up down there! This should be impossible! Only my body would find a way to do this... I personally think it's hysterical in theory, but it is admittedly slightly less than hysterical in practice.

Dr. A finished being a hero and came up to the clinic. He looked tired. Dr. Sidekick was writing me a note for school about my hospital stay (It's a long story, but I need the note for school even though I'm not in any classes right now). I had to give him the dates... it was a lengthy stay. I asked Dr. A about that. If you remember, he promised 5-10 days in the hospital. He told me that the blood loss thing definitely contributed... and then he dropped the winning phrase, "And, Hannah, I think we've established that your body does not respond normally to surgery." That's one way to put it, Dr. A! ;)

Dr. A is nice, but I don't think he quite gets it. When I saw him last week, he instructed me to get off steroids and pain meds, eat more, gain weight, and exercise more. Kind of like in James... ""Go in peace, be warmed and filled," and yet you do not give them what is necessary for their body, what use is that?" These are all things I want to do and am trying to do... but I CAN'T yet. And I don't think he knows how I can get there, either. His genius advice on eating: "Try to eat foods you like." How many years of med school do you think it took to learn THAT helpful pearl of wisdom? ;) Really, though, I do not blame him; I'm just beyond his specialty. He's a Colorectal surgeon (although I'm not sure if that's how he introduces himself at social events. Kinda a conversation killer, don'tcha think?), and I don't have a colon OR a rectum! So there's really nothing more he can do to me (ahem, sorry, "for me"). I have to see him one more time, in January, then I sincerely hope we shall part ways.

Of course... this morning I woke up with a high fever and stomach pain. Hoping and praying that this is just the flu or something, not the return of an abscess!

Hannah ;)

Thursday, October 7, 2010

Happy Birthday, Semi Colon!

One year ago today, I posted the first ever entry in this blog! Originally intended as a convenient method for me to communicate how surgery and recovery was going, Semi Colon has evolved into much more! I also had no idea I'd be keeping this blog going for so long. I assumed (we sort of all did) that I'd have surgery #1 in October, #2 over Christmas break, recover, and be all healthy again in a year!

Mainly, this blog is a sort of weird therapy or outlet for me. It's easier for me to write about my struggles than to talk about them. Writing allows me to process through everything and God typically uses that to tweak my attitude and perspective as is so often needed. ;)

A lot of unexpected things have happened in the last year, many of them very painful and not fun, but I say with complete honesty that God has used them all for good.

I'm so thankful for all you readers, for those who follow and pray and comment... You all encourage me so much, and I hope that somehow Semi Colon helps you in some way... even if it's as simple as, "Wow, glad I'm not Hannah!" Just kidding!!!! ;) Anyways, to all of you who read these long-winded ramblings... sometimes I wonder why you read the gross stuff I write about. You people need new hobbies! ;) But really, truly, I appreciate you all quite a bit, and I do apologize for the oversharing and venting here on Semi Colon.

One of my nurses was from the Philippines. As I told him my story, he commented that I would be dead if I lived there. Now I have a bit of a guilt complex about being alive, ;) but really, it's quite true. There is no way I would have survived everything if I weren't here in the US, and even here, I've had a brush or two with death. Additionally, I didn't have health insurance until college, and without the amazing insurance God provided through TCU, I would never have been able to see the specialists I needed or have some of the treatments and medicines that gave me a few good months. God has so clearly preserved me and saved me numerous times.

Sometimes I do honestly wonder why me... but not "why do I have to suffer?" I wonder, "why am I alive?" Why has He chosen to bring me through to the other side of such sickness and suffering? Why am I able to live when so many other people don't even have clean water or basic medical care? I am not sure why He's blessed me so much. But the most important way that He saved me wasn't physically saving me from death from UC or pancreatitis or surgery complications. You see, even though I'm alive and I know God has saved my life, I also know that I will one day, in fact, die. So the most important way God saved me was when He saved me from my own sin. I was enslaved to sin, a worse disease than UC. I was living for myself, I couldn't even live up to my own conscience's standards, much less God's standards. I didn't have the power to turn to God. But Christ died for me when I was still a sinner, and by faith in His death and resurrection, I have peace with God and I'm free from the terrible disease of sin. Now, instead of facing eternal separation from God after I die, I look forward to an eternity of worshipping Him. On that day, I will be entirely free from sickness, suffering, and sin. I will be free to worship God perfectly without any of the imperfections I have now.

Happy Birthday, Semi Colon...

Hannah ;)

Monday, October 4, 2010

Drumroll, Please....

I am doing BETTER! I'm trying really hard to actually eat food... and it's working... I still feel nauseated all the time, but it's not as bad. I am still just eating pretty pathetic amounts, but it's a huge improvement over eating literally NOTHING! ;) Also, my joints are actually feeling not so bad! They are still stiff and sore, but it's on a far lower plane of pain than they've been on for the past several weeks. My energy is definitely not normal, but I am not totally comatose 20 hours a day, which is nice. ;) I'm very thankful and I hope that I'm turning a corner!!

I did see some doctors on Friday. Dr. A very nicely came to see me although he is not supposed to be in clinic on Fridays. I think we can safely say that the drama surrounding the drain is winding down, and I have a Mr. Clean-ectomy scheduled for Friday! So I think that the "Epic Fail" story will have a happy ending. I appreciate them going above and beyond trying to right the wrongs, although of course I'd really prefer to not have suffered through the "wrongs" part. ;) I also saw a new internist... for the last internist experience, click here. It was okay, definitely much better than the last one, but sorta similar (what is their deal with pushing pneumonia shots on me?!?). She was not very familiar with the J pouch procedure, but she was willing to ask questions and listen, which I really appreciate and is a good sign, I think. I need an internist for all the general stuff, like if I get a sinus infection or something, and hopefully she can help with the specialist juggling, but she's not gonna be breaking any new ground or curing me.

I was in the beautiful wedding of two very dear friends this weekend... congratulations to Daniel and Claudia!! Claudia is an incredible friend. We've stuck it out in good times and bad. On my fun UC journey, she's been with me every single step of the way and has done more for me than I can possibly describe! When I started seeing a GI doctor, I had no car, so she took me to every single appointment (and also to the ER more times than I can count on one hand). She's cooked for me, takes me out so I feel normal, encourages me, laughs at me, and is simply an amazing friend. I had a great time and my body started this whole upswing thing just before the wedding started, which was AMAZING!

I also started training for my new job today... that's right... I got a job! I'm nervous about keeping up with everything, as my body still is rather finicky and fickle. But it will feel wonderful to have things to do and places to go and be a productive member of society again. ;)

I am so thankful for feeling a bit better the past few days. I can't even express it. My mind starts going all nuts cause it's so excited and happy and I feel somewhat like myself, not like someone who got backed over and then run over again... ;) Whether God allows me to keep improving, or whether I don't, I know that He is and will continue to use me wherever He has me for His glory. I can't begin to describe all that He's taught me and all that I've learned and how He's changing me through this trial... but I will try very soon to condense it into a post. Look for it soon on Semi Colon! ;)

Hannah ;)

Wednesday, September 29, 2010

Remember the Scope

The latest chapter in the Mr. Clean Saga is that Dr. A has yet to return my phone call. I'm not exactly holding my breath. ;) I'm in the process of obtaining saline syringes from my GI Dr's office - they have been great and are taking care of me even when it's probably outside their umbrella of responsibility! In the process, however, is the search for an internist who can oversee my care. I'm not excited about gaining another doctor (see here for a glimpse into my last experience with an internist), but I understand that it's necessary for me to have a general doctor.

I had a sort of last-minute scope of my stomach today. My GI Dr wanted me to have the scope ASAP, and his counterpart (who is smart and nice and I really like - he talked me through the Remicade decision when I was inpatient one time) agreed to fit me in today! Wow! This is amazing, as it can literally take months to get in for a scope. I feel like GI Dr. really went above and beyond for me, which I do not take for granted and truly appreciate.

For those of you who are interested, I think this was either scope #15 or 16... I've totally lost count at this point, but suffice to say I've been around the block a time or two with the whole scoping nonsense. You know, the receptionist greets me, first and last name. See, she has a granddaughter named Hannah (who lives in England. She buys gifts for her through eBay and amazon.com and has call her husband every time to help her convert dollars to pounds). Every nurse on the floor said hi, since they all know me.

This was, however, only my second time with a scope down the throat... The other time I had an EGD, it was no biggie and they also scoped in Squirt while I was out. The only hitch this time was that my GI Dr was NOT doing the scope. See, at this point, I'm such a druggie and they've sedated me so many times that I probably need enough drugs to put down a large animal to make me yawn. Since I look so small and innocent, ;) doctors usually have a hard time believing this and tend to think that a tiny amount of sedation will probably knock me out cold. GI Dr forgot to pass this information on to his counterpart. I told Dr. Counterpart that sedation doesn't actually sedate me at all. To his credit, he offered to bring in an anesthesiologist and have them put me totally out, but they were already running way behind, and I didn't want to make my poor mom wait any longer than she was already going to have to wait. Plus, he told me he'd give me a little extra sedation, and the test was only going to last about 5 minutes. So... in what was probably not the best decision of the year, I opted to just go for the sedation.

The test did only last a few minutes, but it was unpleasant and the extra drugs unfortunately did not really phase me, as I was pretty well aware as they shoved a camera down my throat. I coughed and gagged and retched through the whole thing, but the good news is that my tummy looks okay. The bad news is that we therefore have no clear idea as to why I'm so nauseated and stuff. And my throat is really sore now from my body's (unsedated) reflexes fighting the scope. ;)

The plan is to try a special antibiotic for GI infections as well as some antifungal stuff and probiotics. The line of thinking goes something like this: I'm immunocompromised, have been on long-term antibiotics for pouchitis, then had hard-core antibiotics for the infection after surgery. So I may have some bad bacteria/yeast in my GI tract. There are some holes in this theory... they were hoping to see evidence of this infection in the scope, but they did not. Also, the drugs that are the typical mainstay of treatment for this sort of problem are ones that I have been taking consistently since November. So I think they are just treating so they have something to try... but it's worth a shot, I guess. I am nervous because in the past I've had a run-in with the antibiotic they want me to try... and the antibiotic won. So please pray that the rematch will go to Semi Colon. ;)

The other issue is that we are aware that my stomach simply doesn't work properly. I've been told I have gastroparesis... balanced out with dumping syndrome. Basically, my stomach, at times, decides to NOT empty, causing nausea and pain. At other times, it empties way too rapidly, causing a drop in blood sugar, stomach cramps, nausea, and malabsorption. It's apparently unheard of for these conditions to coexist (but since when has that stopped my body?), and the medicines to treat one issue will make the other issue worse, but either issue can cause nausea. Since my body can cycle from not emptying to emptying too rapidly within a few days, I have no idea how we can treat both. But, at some point, the doctors would like to do a test to see how my stomach empties. I'm not really sure how that will be useful... they could do that test every day of the week and come up with that many different answers for how my stomach empties!

Anyways... I think that my GI system is just totally traumatized from all it's been through since I got sick in 2006. All the little nerves are a little bit freaked out. Once they get over their PTSD, hopefully they will get their act together and start working properly. That's my theory, and I'm sticking to it! ;)

Please continue with the Romans 5:1-11 challenge!! Hopefully you are through verse 10 by now... but if not, don't lose heart! If you never actually started, that's okay, too - but why not start now? If you're too intimidated, why not at least read through these verses every day? It will take you less than 5 minutes. God is using these verses to help remind me to keep things in perspective. I was God's enemy! My sin makes me repulsive and offensive to God - there's such a huge contrast there between my sin and His perfection purity and holiness, yet He DIED for me! Wow! How can that not make you feel amazing? What a tremendous blessing that I am totally unworthy of receiving... puts a little thing like being awake for a scope seem pretty insignificant. I think that's what Paul was talking about when he said in Romans 8:18: "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us."

Hannah ;)

Monday, September 27, 2010

Epic Fail: The Saga of Mr. Clean

~Part I~

The Discovery of the Larger-Than-Softball-Sized Mass

After Hannah spent several days post-operatively literally screaming in pain and complaining that it was difficult to even breathe due to the swelling of her belly, her white count skyrocketed. She felt as though she had a UTI, but tests were negative. A CT was finally done, revealing a huge fluid collection or abscess or something in her abdomen, indicating that perhaps the doctors should have listened a bit sooner when she said it hurt.

Subsequently, a drain (Mr. Clean) was placed. You can read about it here; it was an interesting experience Hannah hopes to not have to repeat. It was just super weird. After a very painful first night, things seemed to be on the right track.

~Part II~

Hannah is Sent Home

On the day of discharge, it becomes clear that Mr. Clean is going home with Hannah. As there is some care involved with the drain (flushing the tube out with a saline syringe twice a day), Hannah asks the six surgical residents if she needs to continue this care at home. She is assured by six surgical residents that, no, she does not need to do anything at all with the drain. Hannah questions this. She is condescendingly reassured that, no, nothing needs to be done. Hannah asks a third time, not to be rude, but to be certain. She receives the same answer, and is instructed to make a follow up appointment with Dr. A for Tuesday (three days following discharge), at which point he answer any further questions she has about the drain.

~Part III~

Hannah is at Home

Hannah spends all day Monday trying to make the Tuesday appointment with Dr. A. Finally, around 4 pm, the appointment for the following day is confirmed. At 6 pm, Hannah receives a call letting her know that Dr. A has cancelled her appointment; after all, she just got out of the hospital three days ago. Okay... Hannah receives a call from Interventional Radiology, the people who placed the drain, wanting to see how she's faring at home. Hannah says she's fine. IR asks if she's having any trouble flushing the drain. Hannah remarks that she was told not to flush it. IR seems a little uncertain about the wisdom of this. At this point, so does Hannah, so she calls Dr. A's office. Dr. A's office seems aghast that she is not flushing the drain. Hannah also mentions that she was told by the same people to make the Tuesday appointment, and she doesn't want to come in if it's not necessary, but she would like to know what the plan is with the drain. A staff member calls back, confirms that she should flush the drain twice a day and she will give supplies to the GI Dr's nurse, who Hannah will see on Wednesday. Dr. A would like the drain removed next Tuesday, and then for Hannah to see him 2 weeks following.

~Part IV~

Hannah Attempts to Procure Supplies for Mr. Clean

Hannah attends GI Clinic and asks GI Dr's nurse for the supplies to flush Mr. Clean. This turns into a huge fiasco, as no one anywhere has documented what needs to be done with Mr. Clean, and Dr. A's office did not, in fact, contact her to let her know that Hannah needed supplies. Poor GI Dr's nurse has to run around and get approval from someone, as no one knows what Hannah is supposed to be doing with Mr. Clean, as it is not documented anywhere. Hannah gets supplies, after a long period of waiting and much hair-pulling by GI Dr's nurse.

~Part V~

Hannah Has Difficulties

So... as you may recall, Hannah's rear end has been permanently sewn shut. In theory. On Thursday, Hannah begins to experience pressure in her abdomen and goes to the bathroom... blood comes out the theoretically sewn shut backside. As Hannah flushes the drain, she experiences the same pressure and the same issue. Monday (today), Hannah calls Dr. A's office. She politely inquires if this is normal. She encounters a nurse who not only does not speak fluent English, but is totally unfamiliar with the surgery Hannah had and Hannah's anatomy and Mr. Clean. The nurse encourages Hannah to go to the ER because of the bleeding she is experiencing. Hannah says, "No, the ER doctor will not know what to do. I need to talk to Dr. A." The nurse says she will relay the message to Dr. A and call back.

~Part VI~

Hannah Bangs Her Head Against a Wall (Figuratively)

The nurse calls back a few hours later with questions about the drain. She spoke to Dr. A and neglected, it seems, to ask him about the whole bleeding from the theoretically closed backside issue. This causes Hannah to wonder what the nurse did talk to Dr. A about. Hannah answers the questions about the drain. It seems that Dr. A wants her to cancel the appointment with IR. Dr. A now revealed to the nurse that he doesn't want the drain out until it is draining less than 20 cc a day. Hannah is not sure how this is ever going to happen, since she flushes Mr. Clean with 20 cc a day... so the output is always going to be at least 20 cc. And if that is the case, Hannah also wonders why Dr. cancelled her appointment with him and instructed her to have the drain out this week. Is it bad if her drain is still draining more than 20 cc almost a month after it was placed? The nurse has no answers, but clearly does not have an understanding of what they did to Hannah during surgery. So Hannah tries unsuccessfully to explain. After being asked to loudly repeat three times the embarrassing phrase, "THEY REMOVED MY ANUS" without the nurse comprehending, Hannah requests to speak directly with Dr. A, as this telephone game was clearly not working. The problem remains that Hannah is bleeding out of an orifice she no longer has and she needs to know if this is normal or if it's a problem. The nurse tells her to just watch it and she's sure it's fine. Hannah requests again to speak directly with Dr. A. The nurse finally admits, "I not know the surgery you have. I not know what is the drain you have. I leave message for Ducktah A call you tomorrow."

~Part VII~

IR Saves the Day

There is a sort of happy "ending" to this story... Hannah calls IR to cancel her appointment and tells them she has several questions. They immediately have a PA on the line who is equally concerned about the backside issues, but took the time to answer all her questions concerning the drain and was extremely knowledgeable and helpful. She made a plan for the drain (flush with less saline, she will call in a week, Hannah can call at any time with additional questions, whenever the drain output minus whatever is being flushed in equals 20 cc, Mr. Clean can come out). Why can't SHE be Hannah's doctor? Anyways, IR is the hero of the day. But Hannah would STILL like answers about the bleeding thing... She is pretty sure the blood is from the fluid collection/abscess that Mr. Clean is supposed to be draining. But really pretty sure that this should NOT be happening...

~To Be Continued...~

I'm confident that there will be a Part VIII and probably more, as I realized that I do not have enough supplies to keep flushing Mr. Clean indefinitely. So I'll have to acquire more supplies, somehow... I am extremely disappointed with the way communication concerning this surgery and Mr. Clean's care have been handled. No one seems to know what's going on, everyone has a different story, and Dr. A is not doing so hot on communicating with me, but will cancel appointments I have! As a Christian, I want to be gracious and kind and understanding... but at what point do I put my foot down and say, "This is NOT OKAY!" At what point does this miscommunication and phone tag rigmarole become dangerous to me?

Sorry you had to read this whole epic adventure... congratulations to making it to the bottom!

Hannah ;)