almost 2 years after takedown, I have been having chronic active pouchitis. Having BM 15times/day is pretty normal and sometimes even worse. It seems antibiotics do work, such as cipro and augmentin. But as soon as I stop them, diarrhea will come back.

Just wanted to know if anyone has been on antibiotic chronically?

I am also considering to see Dr. Shen. Any information or experience on/with him will be appreciated. (such as hotel information, the length of stay, etc).

Thank you all in advance.

Have you had pouchitis since takedown? I am 3 months out and am battling what seems to be chronic pouchitis with continual augmentin usage since 2 weeks before takedown. Please let me know how you make out. Sending you wishes for better health ahead.

I suspect that I'd had pouchitis even before ilioanal anastomosis because I constantly had anal pain and pus-like discharge. 2 years after takedown, I am still having 15times/day BMs. In retrospect, I should have asked my doctor to give me antibiotics before takedown like you did. But my surgeon dismissed my suggestion saying it was mucous.

So you have been on augmentin for about 3 months now?

Thank you so much for your good wishes. The same to you too.

Jwei,

I had the same issue...pus discharge after step 1 and was also told it was normal at first. But after I complained about it often and had nights of constant fluid leakage while sleeping and lower back pain, my surgeon admitted that it could be pouchitis and started me on the augmentin.

It has been over 3 months and the last 2 days are the first time I have been off it since I first started it. I am crossing my fingers than I can stay off it.

Have you tried imodium/pepto combinations to help with the diarrhea? Fifteen bm's a day does sound high but if I were to add my day and nighttime, I am somewhere around 10.Also less sugar/wheat/flour seems to help me and lots of water and metamucil wafers.

My GI was concerned about c-diff from the long term antibiotic use and really wanted me off them. My surgeon was not as concerned and had me start florastor while on the antibiotic to help prevent c-diff. I am still having some issues with possible cuffitis so I am treating that with canasa suppositories.

Best of luck and let us know how you make out.

Good luck to you. I have been on antibiotics for over a year - cannot get off them - and I suspect that I will be on them for the life of my pouch. My quality of life can be fairly good on the antibiotics when I follow a very strict diet. I also thought about Dr Shen, but then thought he may not be able to offer anything else at this point. If antibiotics stop working then I might seek his opinion before going back to a ileostomy. I know some people have been on antibiotics for years and years. Augmentin is safer than Cipro so I am trying to stick with that.

Twice I've had points in my life where I couldn't get off antibiotics. The first time I controlled it with a low dose cipro routine for many months and finally very slowly tapered it off. Several years later it happened again only I couldn't get off. I was on a rotating cipro/flagyl routine and eventually both stopped working. I tried rifaximin to no effect. It was actually a 2 week course of amoxicillin that finally cleared me out and I've been maintaining health for about 6 months now with twice daily VSL DS. Expensive, but I got partial insurance coverage and since it's working I gladly pay it.

There have been people on here that are on constant rotating antibiotic schedules. flagyl/cipro/rifaximin/amox or augmentin is a common rotation. There's also several other antibiotics that can be taken. If you have to do it, it can be done with a good quality of life.

i hope i wont have chronic pouchitis, im almost two years out since my surgeries and i just had my first case of pouchitis. high frequency, some blood, and muscle spasms down there which i had mistaken for popcorn getting stuck... i felt great on the antibiotics, i could go hours without a bathroom and felt good and stools were formed, but now, about a week after finishing antibiotics, im feeling almost the same, acidy feeling and burning, going to restroom alot and gurgling. ive never tried immodium, should i try and see if it helps or should i figure out if i need antibiotics again? thanks =)