So... on Wednesday, the day after my appointment, my GI's PA called to let me know that they were calling in a few meds for me, and not the ones we'd talked about the day before: Cipro and Canasa, an anti-inflammatory UC med. Unfortunately, I can't take Canasa because that class of medications gave me pancreatitis, and I've done three rounds of Cipro. She paused and transferred me to GI Dr.
GI Dr pondered, and told me his thoughts:
He is not convinced I have pouchitis. It's very, very rare to get before takedown. He thinks there are three possibilities, all of which have made-up sounding names that make me giggle:
1. I do have pouchitis
2. I have something called "Irritable Pouch Syndrome," so basically my nerves are messed up, causing the pouch to spasm and peristals for no reason. This doesn't explain the bleeding, though.
3. I have something called "Backwash Ileitis" which is ulcerative colitis in the ileum (the end of my small intestine that makes up Twitchy).
Don't you think that those names all sound fake? Who came up with that? Um, excuse me, we need some fancy Latin names over here in the GI Department!
My scope showed a lot of inflammation and bleeding, but no ulcerations. Dr. A didn't take any biopsies when he scoped me (which surprises me, since they've done biopsies the other 9 times I've been scoped). Apparently, without the biopsies, GI Dr. can't differentiate between the three possibilities. So yeah, scope # 10 (eleven if you count the cystoscope) will be taking place in the near future. I was so, so naive when I posted that the good thing about no colon was no more scopes. Oh, how very wrong I was! ;)
In case it is IPS, he prescribed me a med to help with the spasming. Only problem is, it inhibits bladder function. Mine is already really screwy, but we decided that bladder issues are the lesser of two evils at this point. The med isn't really helping a lot, though.
He should be calling in the antibiotic we discussed on Wednesday, too.
The main problem this week has been the dizziness/blacking out thing. I'm really shaky all the time. For about an hour a day, I get really lightheaded and literally can't put a sentence together, I'm so out of it. When the dizziness passes, I get a horrible headache. My back is really hurting and my joints are incredibly stiff and sore. I'm nauseated all the time, have no strength, and my heart is racing. If you Google "adrenal crisis"... I'm in one. I have every single symptom, down to the salt cravings! Kind of crazy! At the advice of TCU Dr (still haven't heard back from Endocrinology), I upped the 'roids to 10 mg yesterday. I've worked SOO hard to get down to where I was... I was at 10 mg around Christmas and I've been slowly coming down since then. So this is very frustrating. And I still feel horrible. My body really hurts a lot (the best way I can describe it is that it feels like I belly flopped from high dive into an ice cold pool - that every-fiber-of-your-being-on-fire feeling), but I'm so nauseated that I don't want to take any meds, and I won't take my really hard core pain meds when I'm lightheaded because I hate how that makes me feel. So the past few days have been extremely rough. If I get dizzy one more time, I'm pretty sure I'm going to the hospital. I'm just very worn down and in a lot of pain, for some reason.
I started an internship last week and a work study this week, in addition to several tests in school. Not really sure how I made it through all this. TCU Dr. was rather disbelieving that I could function, since I'm so shaky and hurting. It's been really hard. I got real dizzy in class yesterday and just put my head on my desk and sat there visibly shaking for the rest of the class... the professor and a friend came up after class and were like, what's wrong with you?? and made me come to his office til I felt okay. I wanted to die. It was sooo embarrassing. :( Then I went to work... somehow I've been pulling that off. ;) I did postpone a test I was supposed to take today. Hopefully the extra steroids will kick in and I'll start feeling more human. Every day as soon as I walk in the door, I pretty much literally collapse into bed and lie there shaking. So hopefully this weekend is a good respite!