I am pretty new to this website. I have been reading and noticed that many people have said that some of these things have worked for them for pouchitis and cuffitis. (VSL#3, Yogart, Culturelle, and Danactive). Some of these I have not heard of before. I have started taking 1 yogart a day and 1 danactive at night for 6 days and I see a little bit of improvement. I am also on diflucan 1 week out of every month (which has improved somewhat over the year). But unfortunately, I can still go up to 100 X a day. Every so often I have a few good days or weeks. Mostly, not good. I have been talking to some people about having per. ostomy and am pretty certain that is what I want to do (7 years of pouchitis and cuffitis). But, want to be certain that I tried everything before I do this. Does anyone have any feedback, doses taken, info. ect. on VSL#3, yogart, danactive, and culturelle?
My doctor also suggested having me try lactulose. This doubled my bathroom trips. Doc. said to at least try to get through 2 days but couldn't. It made me too sick.

Any thoughts?

kerianne

I tried PB-8 as well as VSL and found they made me worse. Some folks have said if you can get through the first 2 weeks, then you see improvement. Didn't work for me.

But, if you haven't tried this route yet, it's probably worth a try. The thing is that if you are on antibiotics, they will kill the good bacteria. Generally you have to be able to get into remission and off of drugs for the probiotics to do their thing.

Hi Kerianne,

I see by your public profile that your surgery was in 2001. Have you had such a difficult time all those years? By a "per. ostomy," do you mean a permanent one? I'm one of those folks who struggled for about five years and finally settled on a permanent ostomy. If you look for my older posts, you'll see that diet and VSL 3 did make a big difference for me at some points. In the end, adhesions did me in, although I resisted an ostomy for a long time. Perhaps you need to feel you've exhausted all resources before you make the decision, which I completely understand. Why do your docs think your j isn't working well? Have you been assessed for chronic pouchitis? I chafed at the idea that people over 50 don't do as well, statistically, as younger people do with ostomies, and I still think there are lots of exceptions. I was (and am again) a very active, physical, healthy person, so I went ahead with the J (after another failed continent ostomy), but I do wonder now whether I should have listened more to that info when I was 56 and having these surgeries. (You didn't indicate your age, and in some ways it doesn't matter - it depends on whether you can envision returning to a normal life with rerouted plumbing, not an easy decision.)

As for Jill's experience, it has been enormously helpful to me through making the decision and learning to live with an ostomy. I used to believe that probiotics aren't helpful until you're off antibiotics, but my primary care doc is now promoting probiotics WITH most antibiotics that traditionally upset the gut, based on a study she'd read and made available to her patients. When she prescribes an antibiotic, she also gives you the handout and tells you to take probiotics with the course of the drug.

Please email me privately if you wish: it sounds like you're spending most of the time in one room....a tough life right now.

Best,

Barbara