I have had pouchitis for 15 years, since my surgery, and have tried most meds for colitis/pouchitis/crohn's disease. These include Lomotil, Cipro and Prednisone. Nothing seems to make a difference. Does anyone out there have any suggestions??????
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Have you tried a biologic like remicade? That may be a good discussion with your GI doctor.
Would definitely agree with Remicade, stelara, Humira, etc.
It might be worth trying Flagyl, or Cipro and Flagyl together. You’ll know in a few days if it’s doing the trick. If that fails then trying a biologic medication makes good sense.
Has anyone tried entocort/ Budesonide?
I used antibiotics (many) for over 20 years to treat pouchitis, mostly successfully as far as dialing back symptoms. Entocort also helped when I got really bad flares. What was observed over the course of 20 years was that while the antibiotics consistently dialed back the symptoms, I was gradually losing the battle against inflammation. And you can't think everything is fine if antibiotics dial back your symptoms and the inflammation isn't being controlled. Because what will happen eventually is you will end up with a stricture, or a fistula or some other issue. It usually happens at the J Pouch inlet because there is no backsplash valve and fecal pooling can happen right above the inlet as a result.
Because I was losing the battle against inflammation as shown on my scopes demonstrating attritional changes, I went on Remicade. Remicade cleared up the inflammation in the J Pouch. More resistant to treatment, but at least being held in check, is the stricture at the inlet and the inflammation in the neoterminal ileum above the J Pouch. I think my course of treating pouchitis is a common one. When antibiotics work they may work more on symptoms than on inflammation. Watch the scopes year to year for the attritional changes. It's really important for the long term to monitor how your inflammation responds to the treatment. If you think your symptoms being better/cleared up that means game is over, then you are wrong. It's a long term battle. Scope every year for chronic inflammation and keep an eye on the pattern and location of the inflammation.
Be careful with staying on antibiotics for long periods of time, it can cause CDIFF, just be sure to get probiotics in you but spread the probiotic and the antibiotic apart at least 2 hours 
I take Entocort for 7 years now to treat my chronic pouchitis / ileitis, usually a dosage of 2x3 mg per day. It reduces inflammation, but does not clear it up.
So far none of the biologics and other recent meds have helped. In the past 6 years I tried Remicade (Infliximab), Entyvio (Vedolizumab), Azathioprine, Stelara (Ustekinumab), Xeljanz (Tofacitinib) and currently a biosimilar to Humira (Adalimumab).
Antibiotics (Cipro & Flagyl) have the best effect for me. During the last 18 months I took them approx. once a month for 5...7 days. (A trial over 4 weeks got me a C.-diff. infection, so I try to keep off them for some weeks after usage.) Even that way my overall health and blood levels have improved over that time.
But also antibiotics do not heal my inflammation. My last scope in December revealed a little inflammation in the pouch and some more in the terminal ileum, although I had taken those antibiotics for ten days before.
Has anyone tried short chain fatty acids for pouchitis? They are a nutrition for the bowels mucus. Sodium butyrate (mainly as supplement, few times as an enema) helped me to wean off Entocort for several weeks some years ago, but the effect vanished after I got an intestinal infection.
I never had CDiff in 20 plus years of taking antibiotics continuously. If you rotate antibiotics periodically - every 2-3 weeks- that should help and also avoid building up resistance. I typically went with a 4 antibiotic rotation, sort of like a 4 pitcher baseball rotation that used to be in vogue at one time (but now it's usually 5 and sometimes even 6 in baseball). At times, I went with a 3 antibiotic rotation, but usually 4. My best 4 were cipro and flagyl in tandem, xifaxin, augmentin and keflex. Never rotate from one antibiotic to another, if they are in the same antibiotic family. This would be incestuous. For example: never rotate from cipro to levacquin. They are both in the floraquinalone antibiotic family.
Antibiotics do not cause C diff. Some *specific* antibiotics (e.g. CIpro) can make it easier to develop a C diff infection, but only if you’re exposed to C diff or never fully recovered from it. Other antibiotics (e.g. Flagyl) treat C diff. I’ve been on Cipro for 13 years without a hint of C diff.
I would recommend to do your own research on the internet and make your own conclusion, its proven that antibiotics can cause CDIFF, not always though, just a possibility.
I would just recommend probiotic and prebiotic food like oatmeal and greek yogurt but to spread it out by 2 hours from the antibiotics.
Scott is correct. Antibiotics do not cause C. difficile. However, they facilitate the infection. C. difficile is an opportunistic pathogen that causes a colitis-like infection when the normal flora is reduced because of antibiotics. The C. difficile flourishes in the absence of the competing normal bacteria.
This is why avoiding antibiotics is best if your can. Flagyl is safer than Cipro, but there are C. diff strains that are resistant to it. There are even strains resistant to Vancomycin, which is supposed to be the main treatment.
As for my pouchitis, I have had good luck with Remicade + Imuran.
Jan
