Well, it is complicated. And I am back to being fairly irritated about it.
I finally got back in with my GI because (although I felt great on the flagyl and had no problems) I developed symptoms again immediately when I finished my week long dose. I am actually considering making another post asking for advice, but hopefully you guys can answer here and help...
My GI wanted to test me for C-diff. I'd had it before my colectomy, and it had been successfully treated with a lot of Vancomycin. I was tested in the hospital before surgery (to rule it out) and that test was negative, so I did not have it directly preceding surgery.
So, at first, my surgeon (and I) assumed pouchitis because the flagyl treated it. But when I went back to my GI again with symptoms, he tested me for C-diff and the test (I just fount out) came back positive. I'm really upset for multiple reasons--1. C-diff is contagious and my j-pouch is leaking so much right now, I feel so bad that I may have accidentally exposed people to C-diff. I didn't think I could really get C-diff without a colon? 2. My doc prescribed Vancomycin again to treat it, and the vancomycin hasn't worked at all. I'm immune to it now. Or the C-diff is, so I'm back on flagyl.
But the flagyl isn't working as well now as it did before. So I'm horrified and really concerned that I'll lose the pouch because of untreatable mutating C-diff.
Also, I'm leaking a lot now, all the time. Not just liquid, but bits of mushy crap. I can't feel it when it happens, so I never know when or why it happens. I assume it is the C-diff, but I'm not having cramps anymore. Just horrible, disgusting, demoralizing leakage. I'm really upset about it. I never leaked with UC, even when I had C-diff. I take Lomotil, but it doesn't help. I'm worried that (on top of the C-diff) the surgery messed up my sphincters somehow and now I'll be incontinent forever...or maybe the leaking isn't the C-diff, but a diet thing? I have been drinking one cup of coffee/day. Could that cause leakage like this?
Really not feeling good about the J-pouch right about now.