I don't post often - I'm more of a lurker in search of information. However, since I'm sitting the hospital right now I thought I would post about
why I'm here so that hopefully someone else doesn't end up like me. Just as a note, I was diagnosed with severe pancolitis in Nov 2007 so I was in bad shape to start out a little over a year ago.
I was recovering from my second flare (started on pred again in Nov 08) and got a cold which caused the flare to get significantly worse. I upped my pred to 15mg (per my doc) and was getting better but was still extremely tired although I was losing a lot less blood (note: I had my period when the flare got worse). I was tired and easily fatigued but I chalked that up to UC and being sick. I finally decided that I must be getting anemic and went to the urgent care doc on Thursday night for a blood draw to confirm. I got there and my heart rate was 157 (very bad from what the docs tell me) and they couldn't find a vein. They sent me to the ER. My hemoglobin was 4 (it's supposed to be 12+) basically I was walking around w/ 25% of the blood that was supposed to be in my body.
3 days later I now am hanging out in the hospital with an IV line in my jugular vein (they couldn't get a line in anywhere else, even a PICC(sp?) line - trust me - they tried - even using the ultrasound machine). They still want blood tests - even when you're trying to build your amount back up. I've had a CAT scan, ct, endoscopy, colonoscopy, mri, and chest xray. My colon looks like it's been though a meat grinder/shot with a machine gun throughout (I've got the photos to prove it). I have a blood clot in my pelvis which is evidently caused by my uc being so bad. I'm hooked up to an IV of Heparin while they get Coumadin to build up in my body (to break down the blood clot) so that I can go home. Also, I have to decide if I want to go on Remicade (doc says Imuran isn't an option anymore) or get my colon out.
Lessons learned (so far):
1. There's a difference between being UC tired and being anemic. If you're not sure which it is - get tested - better to know for sure.
2. When you lose blood slowly you can walk around with 25% of the blood in your body that you're supposed to have and not realize how low you are.
3. I really hate being attached to an IV!!! It severely limits my mobility.
4. I need to not chalk things like daily exhaustion up to UC and need to keep a closer eye on my body.
5. Feeling ok and not bleeding doesn't mean that my colon is anywhere close to healed.
If one person gets useful information out of this and saves themselves a trip to the hospital or improves their life it was worth the posting (besides - what else is there to do in this place??)
NOTE: Ignore my sig - I haven't updated it since I've entered the hospital. Things are changing on a daily basis and I can't keep up.
BONUSES (NOT) : During my CT scan the docs think they saw a polyp on my uterus...so now my ob/gyn is involved too. I can't take my birth control pills anymore because of the blood thinners so we have to figure out an alternative that doesn't involve estrogen (have to check w/ the hematologist about
progesterone - it may not be approved either).
Ducridr - 34 - female
Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day,
Xifaxin 2 (200mg) 2x/day
, Prednisone 15mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)