I have had pouchitis for 6 1/2 years now. Been in full remission 2 x. All confirmed by scopes.
What are your stories and what have you done to keep yourself in remission. Looking to hear especially form long term pouchitis suffers. Just seems that I'm reading a trend on this board for pouch removal. Maybe I'm freaking out since I've already gone thru 2 meds and this attack is the worse so far-bleeding ulcers. Ok, I am freaking out.
Susan

Hi Susan...you know my story I think. 3 1/2 years pouchitis, rarely off Cipro, tried all the alternative therapies, probiotics, grapefruit seed extract, diet changes, etc...

Finally decided on pouch removal, got talked into just disconnecting. Got worse, 18 months later, pouch out and life has been great since. To be honest with you, based on what I've read, many people are having much worse issues than I had and are still hanging in there.

So, pouch removal doesn't have to be the answer. I just think for some of us the time and sacrifices spent trying to save something that never worked particularly well anyway aren't worth it and life with an ostomy looks good. For me it has been great and I don't regret the decision at all.

I had pouchitis for all of 2007. I was on Cipro 1000mg and when I tried to very gradually get to either 500mg or 250mg or even 0, the symptoms came back. In the beginning of 2008, I switched to Augmentin, increased my VSL dosage to 2x VSL-DS, and took fish oil. I have been antibiotic free ever since.

I wish you best of luck and hope things heal for you really really soon!!

Quick question NY-Pouch:

My understanding is that Augmentin is an antibiotic. How long did you take it before you became antibiotic-free? Was a seven- or ten-day course enough?

I believe I was on Augmentin for 10 days (full dose) and then went on half dose for 2 weeks, and then just stopped.

I've had pouchitis for at least 7 years (probably a lot longer). It does seem to get better and worse of its own accord. I basically stay off antibiotics unless it's getting particularly bad. Then I go on flagyl for a week (or two, if I can bear being on the stuff that long). It all comes back as soon as I stop but it helps to get me through worse patches. I also regularly take VSL#3 which doesn't stop it but does seem to improve things (I often suffer with bad bleeds and it seems to cut down on the number of these). My quality of life is generally still good though (as long as I'm not bleeding heavily) - sometimes it hits my sleep if I'm up a lot in the night but generally it's all managable and it's still a lot better than a UC flare-up because I don't suffer with the same (agonising) abdominal cramps I had with my UC flare-ups.

I've had pouchitis pretty much since I've had my Jpouch and thats been a little over 10 years.

I take a low dose of cipro and xifaxin, and bump up the doses when not doing well. Also take VSL3 and like MikeH said, it doesn't stop the pouchitis, but seems to help the symptoms.