I'm 3 or 4 months into the Cipro / flagyl routine and am having fair results. I did 2 weeks of cipro, was much better and then crashed. Turns out I was invaded by c. diff. Did a 2 week course of flagyl to control the c.diff.and was somewhat better but deteriorated yet again. Had a flex sig done and was diagnosed w/ pouchitis. Surgeon put me back on cipro (reduced dose, 500mg once per day as opposed to twice daily during first course) and a probiotic regimen.
I've reached an equilibrium of sorts. Every 2-3 days, I have a spell of urgency and moderate cramps. these spells last about 4-8 hours. They're annoying, but not catastrophic. The real problem I'm having is with fatigue. I can get myself going, but never seem to be able to get out of second gear and need at least 1 nap a day.

I'm hoping to benefit from the group's experience on 2 questions. What have people found with the sorts of symptoms like I'm having and what have you done about them? Second, at what point have any of you gone from seeing your surgeons to seeing a medical doc, either an infectious disease person or a GI?
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I empathize with your situation as I am a chronic pouchitis sufferer. After a year with a jpouch the only real drug recommendation I can offer to help with pouchitis is what I have been on for over a year that seems to work wonders....augmentin. It is the strongest antibiotic out there and works like magic on my chronic pouchitis.

I moved to a GI about a two months ago as I felt I needed a doctor closer to me (my surgeon is in NY) and I moved past the surgical consult period. I also needed one who accepted insurance as my surgeon did not.

My GI, who is always thinking outside the box, recently started me on xifaxin with terrible results (pouchitis worsened). As others will tell you on the board, pouchitis is like a moving target and often many different drugs/regimes are tried..some with success..others not so much. I also have chronic fatigue and muscle aches with joint pain that I am being told goes part and parcel with IBD, but is also a manifestation of pouchitis.

At some point, your surgeon usually feels his job is complete unless you need additional surgical intervention. Mine helped me for the first 6-8 months as he promised he would help console me through the surgery and adjustment period and he did. I had an incredible surgeon with no surgical complications except for a minor stricture that worked itself out over time. My ostomy scar is amazing. I was so lucky and thankful that I chose such a skilled surgeon, and yet I have had chronic pouchitis and cuffitis over the last year, nothing which can be contributed to the fault of my surgeon. I just happen to be one of the less fortunate jpouchers and sometimes I wonder if having the disease for an extended period of time, as I did (23 years), may increase your odds of developing pouchitis more so than those who have surgery earlier in their disease...just a guess on my part.
I am having problems now after two years since my j-pouch take down with pouchitis. I was put onto Cipro twice daily for two weeks and then when I came on the infection came right back. I am exhausted and feeling very ill. I went back to Dr and she talked with local Surgeon and he said to put me back on Cipro for another week. I didn't improve as well as the first time I was on the cipro and felt so bad today I went back to Dr. (trying to work as well but took today off as too tired and feeling too sick). Dr. phoned local Surgeon who has put me onto Sulofalk suppositories - anyone heard of that for pouchitis? Anyways I have slept around the clock basically and am feeling a bit better and hoping I will be able to work tomorrow as I can't afford any more time off! I don't have a fever and no muscle aches but so exhausted that I can hardly think straight! Also movements were going through me so fast I was dehydrated the first round and in hospital for a couple of days and output was green (not due to diet) just going through too fast. When I came off the cipro I knew I was in trouble again because output increased dramatically and turned green again. Wish Dr. would leave me on the cipro longer and see if it clears up before taking me off again. I am going to introduce probiotics but not sure just when would be good.....anyone with any suggestion on this one? Should I wait until finished the cipro? Thanks
You can also have inflammation throughout your body not just from the pouchitis but from IBD. This can cause this horrible fatigue. Just because your colon is gone, doesn't mean IBD is gone. Some antibiotics in certain people can cause fatigue. Cipro has always worn me down tremendously.
For those with pouchitis.. make sure you are staying hydrated. Dehydration can also cause fatigue.

And Linda.. many jpouchers have antibiotic dependant pouchitis. Maybe you should discuss this with your doctor?
Have to agree re the Augmentin. It has worked the best so far out of any other antibiotic. However, I find I need to rotate it.

The fatigue for me means that it is not under control. When the pouchitis is bad I feel awful and exhausted and cannot function. Consider electrolytes if you are dehydrated from frequency.

My surgeon was a cipro flagyl only kind of guy - but I asked him outright to try these other drugs and because we were so desperate he agreed, and they worked! All thanks to this board.

Good luck to you!

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