It sure sounds like pouchitis to me. Flagyl doesn't always work - it didn't for me.  If it were me I'd ask about trying Cipro, which might fix you right up. It also might be a good idea for your doctor to take a look with pouchoscopy.

I think it does sound like pouchitis, and I think Scott's advice is good.  Cipro and/or augmentin and go from there. If it's pouchitis you will have relief within 48 hours after starting the antibiotics. Entocort takes a while to work.

Thank you, Scott and CT!

My gastroenterologist, (head of the dept at Kaiser no less), didn't think Cipro would help and wasn't very forthcoming with the prescription, but eventually put the order in.   I seemed to feel better the very same day and am now feeling like my old self again!

Actually only had to get up once during the night, somewhat formed stools, no more accidents... wow, I just may be able to leave the house and actually do something!  ; )

Hoping this lasts.  Thanks so much for your help, you guys!

mrwizzer

Same symptoms.  Surgeon scoped me and said I had mild inflammation of the J-pouch.  Sure didn't feel "mild"!  Prescribed Flagyl and told me to start taking Citrucel daily.  One more week to go of about three week's worth of Flagyl.  Symptoms are still there.....somewhat.  They have improved, however, just not gone yet.  I dislike Flagyl for two reasons.  One is nausea and the second is I have to give up my daily martini...or any other alcoholic beverage...while on the drug.  Opened the refrigerator yesterday and zeroed in on a lone bottle of beer.  (Not my preferred adult beverage, by the way!)  Anyway, I obsessed over that beer most of the night!  One more week!!!!!! 

I'm so glad it helped, mrwizzer. I worry about getting attached to pouchitis treatments that aren't working. Ceeeceee, if the Flagyl doesn't clear it up you'll simply have to start a different treatment, but at least be able to have that beer. If I were in your shoes I'd ask my doc to try something else now, since Flagyl isn't really working.

I agree. Two weeks should be plenty to get back on track. I never abstain from my wine or occasional Manhattan when I'm on Flagyl. But, that is just me because I know it is OK in my case.

Jan

I also don't have any problems drinking alcohol while on Flagyl, although I take my flagy early morning and late night after the beverages are consumed.  Recently while on Flagyl I had "Pimm's Cup", featuring a gin-like beverage called Pimm's and fresh lemonade, and I washed that down with a Mint Julep, which was prepared as essentially straight bourbon with a few mint leaves and ice tossed in.

CT, you're crazy!  The gin and lemonaid sounds really good except I'm allergic to both gin and lemons!  But have one for me!

Meh, I've used wine to wash my Flagyl down, no problemo. I consider myself fortunate there is no reaction for me.

Jan

Ok, the Cipro worked like magic for the ten day course I was on it.  Unfortunately, the positive effects started slowly waning as soon as I finished the course.  Now, six weeks later, I'm feeling like I've got my old UC friend all over again.

Has anyone had more long-lasting benefits from Cipro?   Anyone have any bad side effects from the Cipro?  I'm wondering if I should try to order another course.

Also, while I was "feeling good" and having solid bowel movements (a rarity), it took some effort to push all that solid waste out.  Is that normal, or might I be experiencing a stricture or narrowing?  Scott mentioned (above) that my doc should do a pouchoscopy... come to think of it, none of my docs have ever scoped me since the surgery.  Is that something I should insist on?

It's normal for it to be less automatic to poop solid stool than soft stool. It's normal for Cipro to thicken things up, so people may need to back off Imodium or Lomotil, drink more water, and (this is controversial) try soluble fiber, like psyllium. I'd recommend *discussing* a pouchoscopy, but I think insisting is rarely constructive. If I get to the point of insisting, I probably need a different doctor. Lots of people go many years without a pouchoscopy, and most do just fine.

I'm sorry the Cipro benefit went away. You might need a longer course. VSL #3 DS has been shown to help prevent pouchitis recurrence. Maybe give that a try?

I am struggling right now andI had bad indigestion from taking Flagl.  I am experiencing diahrea again after getting off of it.   I'm never sure what brings on the onset of it, whether it is something I ate or the vitamins my primary doctor put me on.  Constant butt burn and using lots of calmoseptine.  My surgery was 12 years ago after UC for 40 yrs.  

Mary

I get pouchitis so seldom that my experience taking Flagyl to get rid of it doesn't seem to fit any particular pattern.  This last time I actually didn't begin to feel better until about a week after I had finished the entire prescription of Flagyl.  Then....everything was just fine (including my nightly martini or two)!  Glad to hear some of us can tolerate liquor while on Flagyl.  Guess the only way I'll know if I am one of you is to try it......next time I'm on Flagyl.  Meanwhile, it does feel good to feel good!!!!

My daughter has somewhat the same issue. She had a pouch revision in December and her take-down in May. 

She has been getting pain & spasms they believed to be pouchitis. sonce she is allergic to Flagyl, they put her on Cipro. She did very well while she was taking it but the symptoms quickly returned after she finished the prescription. 

She started feeling bad about a week ago and she was just admitted to the hospital with acute kidney failure they believe was caused by Cipro. They said it is a side affect and it seems she won't be able to take it anymore. They are still running tests to find the cause. 

I hope you feel better soon!

Good grief, as if things weren't bad enough. I mentioned somewhere that I set up an account on Drugs.com and I'm now entering all the drugs I have used or heard about so I can have a digital record of various issues. Just a suggestion but it may be worth trolling this forum and getting  a list of what people have tried for various issues. I will do this when I have more time.

I hope your daughter's kidneys recover and please keep us informed.

all the best wishes to you all

Liz

mrwizzer, to your questions about being on the antibiotics for a longer period.  typically, your GI will prescribe you antibiotics over the phone based on your symptoms with your first bout of pouchitis.  if it comes back, they will generally have you stay a slightly longer course.  if then, symptoms still return, it'll be time for a pouchoscopy.  from that, that can tell if you have a more chronic issue going on.  i do have chronic pouchitis and have to treat it every day.