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Saturday, March 27, 2010

Home...

I just got home! While I'm glad to be out of the hospital, I really feel like it was a waste of time, and I feel awful.

Overall, they didn't find anything that could be causing the weird episodes. There are a few theories, but no definitive answers. So I'm supposed to call GI Dr's cell phone any time I get one of them. I don't know how that's supposed to help me feel better, but he said it will make him feel better. ;) It's really frustrating to feel so yucky and they can't figure out why or how to fix it. But at least we know it's nothing life-threatening, which was GI Dr's fear.

On a happy note, the biopsies were totally clean - that means NO inflammation in the upper part of my GI system. This is great news! GI Dr thinks the weight loss/weird issues are due to Dumping Syndrome - basically, my body "dumps" all the food and water out of my system before I can absorb anything. He gave me some tips for slowing things down a little. I've been having some serious issues with Squirt that apparently require surgical intervention, but I don't want to do any surgeries before graduation, so I think I can just live with the discomfort til then.

I'm starting about a million new meds for pouchitis and arthritis and pain and sleep. I feel really emotional and weird today from all these chemicals (I'm now on 14 different meds, not counting ones I can take as needed), so we're tweaking dosages.

I have between 3 days and a week to respond to the new meds for Twitchy. If I respond, I will remain on those meds indefinitely - for as long as they work, possibly forever. If I'm not doing better, we will step up to biologics.

Hopefully all these new meds will be able to keep things under control and keep me more comfortable until after I graduate. Once I do, I'm supposed to meet with Dr. A and GI Dr to decide where we go from here - trying more meds, trying surgery #2 plus more meds, or taking out the J pouch and having a permanent ileostomy.

I am very discouraged right now. I just feel awful, and even in the hospital, they can't make me feel better or understand what's going on in my body. I'm really hurting, and nothing seems to be helping. There seem to be no more good options.

Even though a huge team of doctors can't pinpoint what's wrong, or explain why I'm not getting better, I know that the One who made me does know what's going on, and He's allowing this to happen - it's not outside of His control. Even though I'm honestly very tired of living feeling like this, I know He will keep giving me the strength to face whatever He asks me to handle each day! I'd really appreciate your prayers for peace and calm for my family, and perseverance and trust for me.

Hannah ;)

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