I normally post on the Crohn's forum-but lately have been symptomatic of UC. Right now indeterminate IBD you could say. I just saw some new doctors who did their own testing and I have severe rectal/lower bowel inflammation. I'm told I have an 8 in section that was bleeding badly with a lot of mucous present. I am on humira, cortifoam, pred, imuran, protonix. They also found a hiatal hernia-haven't been too hungry and nauseous which they said could cause this. Dropped maybe 7-8lbs
I had the procedures 12/6 and heard back last week that the biopsies confirmed the severe inflammation and also that I tested positive for JC virus-so the option of tysabri is out i'm assuming. The doctor was also testing for antibodies to humira but he didn't have all the reports back at the time. Its been almost a week more and I haven't heard anything. I'm assuming these are Prometheus tests-so it could take a while? Should I call/email again?
Also-its weird I either have bouts of constipation or hours long episodes of diarrhea. I also have bloating, bad night sweats and overall pain, fatigue, and the rectal and lower belly soreness along with urgency. Sometimes I get outbreaks of mouth ulcers and leg nodules which he said were erythema nodosum. However, what more can they do? I'm trying rectal meds along with everything else.
The doctor said how poor my quality of life must be right now and yes its hard to get up and try to work everyday..also becoming anti social as the only people I can tolerate are my family and my fiancee.
What should my next step be?
24 year old female. Severe Crohn's diagnosed 11/06.
Meds- Humira, pred, imuran, protonix, zofran
Post Edited (kix2989) : 12/18/2013 9:55:26 AM (GMT-7)