Indeterminate IBD-what's the next step?

Hi everyone,

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?

Thanks.

Hopefully some veteran posters will hop on your thread soon. Sounds very complicated and terrible :(

Hope the recitals help! Thats my next addition too.

Can't tell how far your disease goes into the colon. Do you have any small bowel involvement?

I don't want to be depressing, but you are on a wack-ton of meds, two of them steroids. My first step would be to ask the doctor for a taper plan for getting off the Pred. Humira takes about 8 weeks to kick in and Imuran 12 weeks. Not sure how long you've been on them for, but you should aim to be off the Pred by the time the other meds have (hopefully) reached full effectiveness.

The steroids might be causing the constipation. Otherwise there is no obvious reason why the bowels sometimes seize up the way they do, but that used to happen to me quite a bit. Like you, I found the constipation worse than the diarrhoea. Miralax helped to keep things soft enough to prevent faecal impaction. In times of desperation, try a glycerin suppository.

Hmm. No small bowel involvement is good. Being on Humira for 6 months is less good. Keep pressing for the antibodies result, because if that shows you haven't built up antibodies, then there might be some mileage left in increasing the Humira dose. Apart from that, if Humira hasn't worked after 6 months, it's never going to. But you can try another biologic.

Honestly, I think you should start finding out what your surgical options are and getting used to the idea that surgery may be needed if medical therapy fails. There are still other avenues for you to explore first if you so wish: diet, experimental therapies, clinical trials.

Oh yeah, and I was serious about tapering off the Pred.