Expectations the first year

Pouchitis needs to be treated; diet alone will not cure active pouchitis so if Cipro and Flagyl don't work you might need another antibiotic. Or is it possible that he doesn't have pouchitis at all? Has he been scoped?

The function of the pouch should improve every year out from surgery.

Sue

We aren't treating pouchitis with diet just trying to prevent flares with dietary management. He was scoped in Feb and diagnosed with pouchitis. We had been monitoring his improvement with calprotectin levels and things were going great. We were getting great results with the VSL enemas. Unfortunately we had to stop them for 2 weeks and his diet was poor so things got bad again. We are trying to get it under control again with the VSL enemas again. Not sure we will be able to. May have to try antibiotics again.

out of curiosity how long does he retain the VSL enemas?

What concerns me is that not only did Cipro and Flagyl not work, but actually made it worse. I am also concerned that this is possibly C. difficile pouchitis, not your run-of-the-mill pouchitis. If this is C. diff, Cipro by itself usually is a poor choice (can cause it or make it worse if used alone). Flagyl is usually effective, but there are strains that are resistant to it and only Vancomycin works (and a new antibiotic fidaxomicin). C. diff is especially suspect, in my mind, since probiotics are more useful than antibiotics.

Since the pouchitis was confirmed and this was many months ago, he may need to be scoped again to be sure there is not a new process going on. Or maybe MORE important is to get testing for C. diff done to diagnose or rule out. Even with all the news about C. difficile, many, many doctors underestimate this infection, and there still are those who do not believe it can flourish in the small bowel.

Just something to consider and discuss with your son's doctor.

http://www.cghjournal.org/arti...8%2900132-8/fulltext

Jan

Most of the time 60-90 mins. Wasn't that long in the beginning. He always empties his pouch first too.

Thanks for your input. He has been tested several times for C diff on my request. All have been negative. The calprotectin levels have been a good non invasive way for us to monitor his inflammation and response to treatment. Ultimately he may need a new scope to see how things look depending on whether he improves or not. With the VSL enemas the calprotectin came down from 1750 to 450. Unfortunately we didn't get to test him when he was at his best before things got active again. I am sure it would have been lower. We may consider FMTfor his pouchitis before a new antibiotic but not sure. We want to try to avoid ending up with either chronic antibioitc usage or an antibiotic resistant pouchitis. Right now we are hoping the VSL will start working again but not sure we will get that lucky again.

I agree. Seems like a good way to monitor the intestinal inflammation. On the C. diff testing though, not all methods are reliable. I believe only the PCR is reliable, and other toxin tests can have false negatives.

I guess the next thing to worry about is if this is actually Crohn's...

Either way, if it can be controlled ith probiotics, all the better!

Jan