Tuesday, June 29, 2010

Hypochondriac? ;)

So last Monday morning, I awoke to an email from my GI doctor. I had emailed him on the previous Friday to let him know that the pouchitis was worse. His email suggested two different treatments he wants to try. Trouble is, he writes, neither treatment has been proven any more effective than a placebo in clinical trials. I was supposed to choose which treatment I want to try and call him.

Well, here it is, a week later, and I haven't called him back. After reading his email, I curled up in a little ball, cried, then went back to bed so I could start the day over again on a better foot. ;) While I really appreciate my GI doctor not giving up on me, I don't want to try more meds if they probably aren't going to help! And I'm just trying to decide - the pouchitis really isn't all THAT bad - it's been way worse. It's not driving me nuts. It's only uncomfortable some of the time. I am not bleeding a ton, just a little. So maybe I should just wait. On the other hand, the pouchitis has been slowly getting worse for the last couple weeks. Maybe we should get on top of it now, before it gets really bad again. I've been praying, and I think I want to hold off on starting anything new for now.

In other health news, I am close to giving up on the steroid taper. I've tried to drop down a little bit two days this week. It just makes me feel terrible. Shaky, dizzy, nauseated, dumping, tired, my pain gets worse... I just don't know if it's wise to keep banging my head against a wall - I've been trying to taper off since late October. Seems like I've hit my threshold and can't drop below the dosage I'm at. Every time I do try to drop, my body takes quite a hit. I've gone back up on the steroids for the last few days, yet I continue to dance dangerously close to that line of needing IV fluids. I see the endocrine doctor on Friday, so we'll see if she has any brilliant ideas or anything.

Dr. Pain remains my hero... I hadn't been sleeping great the last several days - the sleeping stuff helps, but I wake up in pain around 4. In addition to the joint pain, I'm having a lot of muscle pain, which he thinks is autoimmune and inflammation related, too, since it gets better the more steroids I take and is worse on days I take less steroids. He asked me, "How 'bout I mix you up a cocktail and shoot you up wherever you're hurting the most?" I told him I am not supposed to accept drinks from men unless I know what's in them... ;) It was a mix of short and long acting lidocaine, steroids, and toradol - he injected it in the muscles between my shoulders where I've been really sore. It's worn off now, but it sure made me feel great! We're also trying a muscle relaxant type med that will hopefully help me sleep better. Guess what? It works!!! Can't tell you how amazingly wonderful that is! Alas, this weather is like death to my joints, but it's summer in Texas, so I'm sure that soon enough, it will be sunny and dry.

I feel like such a whiny hypochondriac right now with soo many issues - my bladder stuff is acting up again lately, in addition to the pouchitis, adrenal stuff, and joint and muscle pain. I'm a mess, haha! Seriously, though, if I were making stuff up, I'd make up less embarrassing problems!

Hannah ;)

Saturday, June 26, 2010

Adventures of a Semi Colon: And Now, an Illustration

Just for you, Macall! ;)

Here's a lovely pic of what my guts look like right now. I wanted to put funny captions on the picture, but I couldn't, since I don't have photo editing stuff . ;(

So... these are the characters I live with every day. Squirt is the "temporary ileostomy" in the picture. Yes, my intestine hangs out on my stomach... That's where my poop exits my body. I eat, he squirts it out. Hence the name. ;) I wear a bag over Squirt to hold the waste. The bag has velcro at the bottom, so I can empty it whenever I go to the bathroom.

Twitchy is the "J pouch" - it's a piece of my small intestine (the ileum, to be precise) that they looped in a J shape and sewed in down where my colon used to be. He got his name because he is inflamed and bleeding (called "pouchitis"), which causes him to spasm and twitch. The point of Twitchy is to one day, after the "takedown surgery," serve as my "new colon." Squirt will be sewn up and put back inside. Then I will poop like the rest of y'all again. Since the colon is 6 feet long, and Twitchy is much smaller than that, I will have to poop more often than most of you, but that's okay, because I have stock in Charmin.

Hannah ;)

Friday, June 18, 2010

Steroids to the Rescue!

I'm still thinking about the scope results and the wanting to go ahead with surgery stuff. I haven't heard from Dr. A since the scope, which is fine. I need some time to think and pray and consider what the most prudent course of action is.

Well... since my scope, I've been having trouble with adrenal stuff again, even though I hadn't tapered off steroids at all. My pain has also been getting gradually worse and worse this week. I was supposed to taper down after the scope, but since I've been having issues, I waited a few extra days. Yesterday, I took a tiny bit less steroid, and I totally crashed. After a while, I ended up taking the rest of the dose, because otherwise I was gonna end up in the hospital. They quickly helped me be less dizzy and shaky (yessss!), but my pain was unbelievably bad.

I did some reading online about adrenal insufficiency. Turns out that I probably should have had an extra shot of steroids before my scope, then doubled my oral dosage the next day. Looking back, I've had major episodes in the days following every scope I've had this spring. So I think my body is still just trying to recover from that and has been running on empty for the last week or so. Taking a little LESS steroids just pushed me over the edge. Most peoples' bodies produce extra cortisol in stressful situations or when they are sick, but my body can't, so I can't respond to stress or bounce back from stuff like this without taking extra 'roids.

This morning, I was still in a lot of pain, so I took a double dose of steroids. Like a miracle, within 45 minutes, my pain was dramatically improved and is pretty much back at "baseline" - still not fun, but manageable. Yaaaay! Crazy to see how steroids affect everything! I still feel very tired and a little shaky and stuff, but so much better. Only problem is that I'm supposed to be trying to get OFF steroids, not doubling them. *sigh* I'm kinda losing hope that I will EVER get off them, but hopefully I'm figuring out the art of how much I need to take to keep myself feeling halfway decent. At this point, I'd rather be able to sit up without passing out than kill myself trying to taper off if my body isn't ready.

I'm a little concerned, because things had been going okay-ish for the last couple weeks, but every day this week has been a little worse. Twitchy is heading in a bad direction again. Joints have been stiffer and weaker. Pain has been worse. Adrenal stuff acting up again. Hopefully all this is just from a lack of steroids in my system, and the doubling up will get everything under control in a day or two!

Hannah ;)

Wednesday, June 16, 2010

Respect the Pouch

Today's another Humira day.

(Cue in brooding music).

As I feel the cool tingle of alcohol across my leg and hear the clearly audible "pow!" as the needle in the auto-injector penetrates into my subQ tissue (it's so loud it scared my brother!), I envision Twitchy becoming progressively less twitchy and more Super.

(Music reaches a heroic crescendo).

(I hijacked the logo from Capri Sun. But I think my use is appropriate.)

Hopefully they won't mind.

Here's to getting better.

Hannah ;)

Sunday, June 13, 2010

Does God Want Me Healthy? Spiritual Calisthenics

So... I've still been visiting the chiropractor frequently. We're operating on the principle that structure improves function - he may not know what's going on with my body, but he can straighten out stuff so that my body can hopefully function optimally and work on healing itself.

He keeps telling me to say stuff to myself: "I am getting healthy. God wants me healthy. I'm getting better each day," etc. I don't have a problem with positive thinking or anything, and I don't think it's a bad idea to look on the bright side, but... I do have a problem with the whole "God wants me healthy" thing.

What if God doesn't want me healthy? I'm not saying that I know His will or intention. I don't know if I'll be sick forever or if I'll wake up tomorrow and be healthy. I firmly believe He has the power to heal me completely at any time by any means. But I also realize He may choose to not heal me. He may not want me healthy. Let me explain...

Paul tells the church that it has been granted to them to suffer for Christ's sake - it's a privilege (Philippians 1:29). In suffering, we learn dependence on Christ, that His grace is enough, and His power is perfected in weakness (II Corinthians 12:9-10). Peter says we shouldn't be surprised at painful trials, as if something strange were happening to us, but to rejoice to the degree that we share in the sufferings of Christ (I Peter 4:12-13). Hebrews tells us that even Jesus learned obedience through suffering (Hebrews 5:8).

Let me clarify. Do I like suffering? Do I enjoy being sick? Honestly, no. God doesn't call me to be a masochist. He tells me to give thanks in all circumstances. It's interesting that He doesn't say "Give thanks FOR all circumstances." He says IN them. I do not really wake up and thank God that I am in a ton of pain. I'd be lying if I prayed that. But I am so thankful for the results. I'm thankful for what God is teaching me IN these hard times. I am incredibly blessed that He's walking me through this place, because I'm learning so many things I never would have learned otherwise. My relationship with Him is much deeper, and He is refining me and showing me my sin and purifying me. My perspective is so different and my love and compassion for others is much stronger. So I'm thankful IN this circumstance, but not necessarily FOR the hard things, if that makes sense.

Hebrews 12:11 says it better: "All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness." As an athlete, I went through practices that were painful and tough and hard and not at all enjoyable. But the result was that I became stronger. I became a better athlete. My coach didn't put me through intense workouts because he enjoyed watching me suffer and sweat, but because he, in his wisdom, knew it would make me better. And the end result was well worth the effort, even though it wasn't fun at the time. God, who is infinitely wise, puts things in our lives that are hard and unpleasant, not because He wants us to be miserable, but because He knows it's necessary for our growth, so that we can become more like Him.

Finally, historically, does God typically give His people easy, pain-free lives? Think of the prophets - the people who had such a close relationship with God. Their lives were pretty awful. They suffered tremendously - and they were doing exactly what God told them to do. God's own son, Jesus, had a pretty tough life, if you think about it.

What if I were healthy? Does that bring God glory? Would He be greatly glorified if He healed me? Absolutely. But maybe it brings Him more glory if my life is hard, yet I'm still trusting and praising Him. Maybe it's a better testimony to the world and to others following Christ if I suffer. So, that's why I say that God may not want me healthy right now.

Now how do I explain that to my chiropractor? ;)

Hannah ;)

Friday, June 11, 2010


I had my scope today... I was really hoping that today would be the unveiling of SuperPouch in all his healthy glory, but alas, seems Humira needs more time to kick in, wipe out the pouchitis and transform Twitchy. There's still some inflammation there, sadly. And of course, now Twitchy is HURTING from the poking around and biopsies (although I was completely under anesthesia for the procedure, thankfully).

While I am so thankful for all the, on the whole, excellent care I receive as a patient at a teaching facility... there are some completely unnecessary things that simply try my soul and overly poked and prodded little body. So here is just a word to myself so I remember years from now... to be repeated as necessary... "I will NOT be a rude, awkward medical student. I will NOT be a rude, awkward medical student." That's all I'm going to say. ;/

So... right now, you'll recall, I'm "diverted" - contents of my guts just go through Squirt, theoretically. But it seems that I'm not as diverted as I should be - stuff is apparently ending up in my pouch. This is a new development since the last time I was scoped. Dr A's thought is that it could maybe possibly (many qualifiers, haha) be a contributing factor to the inflammation at this point - having waste hanging out in the pouch that's not really goin' anywhere. I know, sorry, yucky.

Based on these findings, Dr A wants to talk to GI Dr and weigh the pros and cons of going ahead and doing the takedown surgery in the near future, despite my multiple risk factors with the steroids and inflammation. We're not looking to make a decision tomorrow or anything, as they will have to wait for the pathology on the biopsies, and a lot depends on what they show, too.

Please pray for wisdom for the doctors to know what's best to do. Having inflammation in Twitchy before takedown is virtually unheard of, so there's no clear consensus or protocol on what should be done. Please pray that the inflammation will go completely away and not return. Please continue to pray for relief from pain in my joints, GI and J pouch. Thanks!

Hannah ;)

Tuesday, June 8, 2010

"Quiet weekends, holidays/ You come undone/Open your window and look upon/ All the kinds of alive you can be..."

Ugh, well, as soon as I wrote about making progress... I've had a couple bad days. Guess I shouldn't have said anything, haha! ;) My joints all swelled up and have been really hurting, fever came back, nausea came back, tummy's quite unhappy, feel like I got hit by a truck. It's kinda frustrating to have such bad days and be hurting so much. I'm just not sure what I'm doing wrong...

The good news is that I have been sleeping better! Yeah, it's a drug induced sleep (my mom enjoys watching how fast the meds kick in after I take them), but I'll take it. I can deal with life much better when I sleep. ;) The bummer is that the meds make me feel groggy and slow all day. I tried just taking half the pill, but unfortunately, I'm still in too much pain to sleep without totally knocking myself out. It's a little frustrating, but for now, the choices are feeling stuck in slow-mo all day or being awake all night in a lot of pain. I choose slow-mo, and I'm being thankful that we've found something to help me sleep, although I'm really not a fan of how it makes me feel.

I have a scope on Friday to check my J pouch out. Since I'm not having surgery for a while, they will have to do this periodically, both to keep an eye on the pouchitis and to, um, make sure that the pouch isn't closing off. How do you think they'll bill that one to insurance? "Rear end dilation"? Haha... no one would ever believe my life!! ;) Dr. A said either he or GI Dr could do the scope. I told him that they could play rock, paper, scissors for the honor after I'm out cold. ;)

So.. I've been off school and work for about 4 weeks now. And I've learned a lot about myself. I don't do nothing well. It has been convicting to see how quickly I got depressed and bored. If God is the central most important thing in my life, then my circumstances should not matter at all! God's been showing me that I've been filling my life with things - school, work, friends, activities - and deriving my sense of meaning and purpose from them. When He takes them away, I'm discontent and longing for more. That's been a painful realization. And I'm striving to change and have Him occupy His rightful place at the center of my life. I want Him to fill my life and heart and flavor every moment of my day and every activity I do!

Hannah ;)

Friday, June 4, 2010

Adventures of a Semi Colon: In Which Squirt and I Inadvertently Scar An Innocent Mother And Child For Life

I just don't blog often enough about the many adventures Squirt and I have. It's like carrying a concealed weapon 24/7. The parallels are many, and I'll let you draw them in your own mind. But I'm pretty confident we could hold up a bank together.

Last week, after polishing off some ice cream (if surgery's only benefit was that I can now eat ice cream without getting at all sick, it was worth it! Okay, there were a couple other benefits, too, but this is one I enjoy greatly!), I headed over to the ladies' room in the somewhat decrepit Braum's. The bathroom door seemed a little wobbly, so I made doubly sure that the little button lock was deployed.

So I'm sittin' there, calmly emptying Squirt's bag when...

... it becomes apparent that the lock doesn't actually work, as lo and behold, a mother and her four-year old daughter are now standing in the doorway.

I guess Squirt made this bathroom intrusion a bit more disconcerting to them than the typical "oh I am so sorry let me shut the door oops" moment.

Have you seen those cartoons where a character opens the door to something terrifying and unexpected, and his eyes bug out?

Did you know that real people can make that same face?

Hannah ;)

Tuesday, June 1, 2010

Making Progress

Please pray for my little friend, Julia! She started having a ton of severe pain yesterday morning and is in the hospital. Please pray for her pain to stay under control, for wisdom for the doctors, and for her to heal up quickly. Please keep her whole family in your prayers - for God's provision and grace and peace to be with them.

Round three of Humira is tomorrow. Over the past few weeks, I've been seeing improvements in some areas, so I think it's working!! I had been running a fever constantly, but I've been fever-free lately, I have an appetite and I'm not nauseated, my joints are less stiff, and my stomach doesn't hurt at all! And, I'm absorbing what I eat, so I've even gained some weight. All these things are very, very good. I'm making progress and taking baby steps towards getting healthier!

GI Dr and I talked about the worsening pouchitis. Really, it's not super inflamed or bad at all right now. Twitchy is just living up to his name. ;) But we really don't want it to get bad again, and we're trying to avoid antibiotics right now, if possible. The other options are ridiculously expensive, so I don't want to fill the new prescription for them. I have a couple days of medicine left over, so I'm just using that. Hopefully it will beat down the pouchitis until Humira fully kicks in.

I saw a new doctor - an internist, who theoretically is supposed to kinda oversee my care at UTSW. It was, alas, a total waste of time. Basically, I listed my issues, she asked a lot of questions without being able to answer any of mine, then shook my hand and said, "Great to meet you. I'll see you again in three months." Like I feared, instead of being able to look at the big picture, she answered any question I asked with, "I don't know. You need to ask your X specialist about that." It doesn't even seem like I would be able to get in to see her quickly if I got sick (like normal person sick - strep throat or something). So I'm not really sure what the point of this doctor is... oh well. Didn't really think adding another doctor into the mix would help. The worst part was that I didn't even get a lollipop at the end! Sad day.

I'm still having issues off and on with the adrenal stuff, but it's not terrible. My pain is still bad, but the new sleeping med plan is helping, so I've been sleeping a little better, which is great!!! Most mornings, it literally takes me a couple hours to be able to get out of bed and get moving, but it's summer - I don't have to be anywhere, so it's not a problem! I just take my time (and a lot of drugs). ;)

Overall, I truly believe that things are finally starting to move in a positive direction! I am so thankful. Seems like every week since January, I've been hitting rock bottom. Then the next week, when I thought it wasn't possible to feel any sicker, I'd hit an even lower rock bottom as something else would go wrong or get worse! Now, I'm seeing improvements and starting to slowly climb out. I still feel crummy, and I still have a very long way to go, but I really think things are going to get better. It's just gonna take a lot of time and patience. I'm trying so hard to NOT be frustrated or disappointed on days when all I can do is lay in bed. I used to see this as personal failure, me not being strong enough, instead of seeing it as God revealing that His will for me for that day. So, I'm learning to not fight God - to honor Him by submitting to the limitations He gives me. I'm choosing to be thankful that God is giving me the opportunity this summer to be still and pray and listen to my body and rest when I need to. And I pray that this will bring Him glory!

Hannah ;)