Hey all,..Ive had my pouch for over 3 years ,had pouchitis 3 times and all because of sushi(raw fish),.. my Dr now has me on xifaxan (3 a day) and rowasa enemas (2every other day) for the past 3 months.I am doing just fine ,no pain or symptoms. Here is the problem,if i stop either medication,I start to flare back up within 2-3 days. I do not take Probiotics anymore bacause they bother me. Any suggestions? Do i need these meds for life?
Thanks,..Drew

You may want to try oral mesalamine, such as Asacol or Pentasa, or the old precursor, Azulfidine (if you tolerate sulfa). They make for better maintenance drugs than the enemas. They don't work better, but they just are more convenient and easier to be compliant with. Obviously, I'd stay away from raw fish in the future. You may like it, but it definitely does not like you.

You may well need lifetime maintenance therapy. If it works for you, then it is worth it I think.

Jan

hi..i do not think the verdict is in necessarily..you might just need longer term usage..this operation is so different for everybody..i know of some folks on this site who were on antibiotics for 14 months and has not needed them since 3 years)then there are folks like me with what appears to be chronic pouchitis and cuffitis..my guess is i will have to be on drugs because if is not one thing it is the other or maybe both happening..

just go with what works..thats what i am doing with the hope that some more knowledge will be obtained..new things out to deal with both those issues..

rebecca

Drew, I had pouchitis a couple of times that I blamed on having a GI bug. Every time I took antibiodics and than came off of them I had the pouchitis reoccur. I did a three month term on flagyl, tapered it slowly and now am on a maintenance dose of 250mgs every day or everyother day depending on how I feel or remembering to take it. This is the only way for me to keep it at bay. I am now thinking of stopping it again to see what happens. This isn't to say this is what will happen to you but at least I am down to 1 pill every other day or so. Good Luck, Scott Mc

Drew,

Seems to me you may have recurring pouchitis. I had the same problem and what seems to work for me is a course of suitable antibiotics, and once it settles, i need to stay on a maintainance dose or else it flares back up.

I'm maintaining it (at the moment that is) with vsl#3. I understand this is not an option for you.

But another thought is try to introduce vsl#3 gradualy. Some people respond well to that.

Cheers
Jerry