I'm sorry you seem to be having such a frustrating course. When was your last pouchoscopy? If it was recent, did your doctor rule out cuffitis? If it's been over a year since your last scope, I'd recommend asking your doctor about getting an updated one before you ramp up the antibiotic usage even more.

Xifaxan is a good one to try. It is extremely expensive, but hopefully your insurance will cover it. Augmentin is another good one that has helped many people, provided you're not allergic to amoxicillin. Bactrim DS worked extremely well for me, but it is a sulfa drug so stay away from it if you are allergic to sulfa. These three are good ones to ask your doctor about.

Hope that helps somewhat.

Thanks so much for your help. I am somewhat ignorant of what cuffitis is and what symptoms and treatment are. Can someone shed some more light on this subject for me. I was thinking of Xifaxin to try next based on what I read from this sight.

Be careful with xifaxin. I have chronic pouchitis and it made my symptoms worse. Augmentin works very well for me. Cuffitis can mimic pouchitis somewhat but you often have accompanying bleeding with it. Standard treatment is Canasa suppositories or anucort suppositories if inflammation is severe. Good luck

Sure. When the surgery is performed, the surgeon typically spares about the last 2 cm of the rectum. This is called the rectal cuff It is an area that is highly concentrated with nerves related to continence, sexual function, etc., so there are benefits to leaving that little piece of colonic tissue behind. Unfortunately, it is still colonic tissue! Inflammation may recur there, just like UC, and it is usually treated with the standard UC drugs as jeane referenced in her post. Symptoms of cuffitis are very similar to those of pouchitis, except in cuffitis there may also be visible bleeding, but not always.

A pouchoscopy would shed light on whether you're dealing with pouchitis, cuffitis, or both. Pouchitis is generally treated with antibiotics, but at least in my case, I've noticed that antibiotics help my cuffitis as well. Unfortunately, when I come off the antibiotics, the cuffitis often flares pretty quickly, hence the need for maintenance UC drugs for that.

As jeane highlighted, there are risks with any of these medications. Some people have adverse reactions to certain ones. One of the advantages of Xifaxan is that it only acts locally in the intestines (very little is systemically absorbed). If you look up the drug conformation on Wikipedia, you'll see how huge the molecule is. The large size of the molecule largely accounts for its inability to diffuse into the systemic circulation.

Thank you so much for the explanation and for your help. I learned a lot.

Whenever I am on Cipro I always feel better but at the end of 10 days it seems like the symptoms come back. Would it be wise to try Cipro again and stay on it for longer? Is the problem that I don't give it long enough to work? I am always hesitant to stay on to things too long.

I have been on antibiotics continuously for 17 years. Rotating cipro, flagyl, and others. I don't have any choice as I can't get off. Pouchitis is not eliminated but merely kept in a "simmering" state. Rotation is key. If you stay on one antibiotic too long it will lose its effectiveness.

Is Xifaxin used more for maintenance therapy?

I don't know if it's used more often for maintenance therapy per se, but there is certainly literature out there saying that Xifaxan may be an effective maintenance therapy treatment.

In my case, Xifaxan wasn't effective when I had active pouchitis. I had to take another antibiotic to get it under control; however, once that was achieved, I went on Xifaxan as maintenance therapy and did very well on it.

Every single antibiotic I take is maintainance therapy since in my case I have chronic pouchitis kept in check in a "simmering" state by taking antibiotics.