Since getting my jpouch in 1987 at age 6 I've struggled with chronic pouchitis. Liver had an adverse reaction to antibiotics (which I've taken since surgery). Now no more antibiotics, probiotics don't work, even prednisone doesn't seem to be making things better. Seriously considering ditching the pouch & going for the bag. Tired of fighting it. Any advice?
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Has Remicade been attempted? I have been told it is the last line of defense against pouchitis.
No remicade but did Humira & Cimzia for a few years each 
You've been through a lot, and probably tried a lot of things. I'll offer some possibilities I didn't see in your post, just in case they were skipped over, or not tried aggressively:
1) Most antibiotics are entirely different chemicals from one another. They do not all have a propensity to affect the liver. Are there perhaps some good, safe candidates you haven't tried simply because they're called "antibiotics?" Xifaxan, for example, would be a very different choice.
2) I take a *lot* of VSL #3 DS (4 packets/day). Have you made serious use of probiotics?
3) Have you tried a very low carb diet, for at least a few months? A low FODMAP diet?
4) CT Barrister uses lactulose as a rotating alternative to antibiotics.
5) I'd probably try a fecal transplant before I gave up on my pouch. It's being used more for stubborn C. Diff infections, but it's not a crazy thing to try.
6) Are you sure about the diagnosis? Could it be anything besides (or in addition to) pouchitis?
Just some ideas. Good luck!
1) Most antibiotics are entirely different chemicals from one another. They do not all have a propensity to affect the liver. Are there perhaps some good, safe candidates you haven't tried simply because they're called "antibiotics?" Xifaxan, for example, would be a very different choice.
2) I take a *lot* of VSL #3 DS (4 packets/day). Have you made serious use of probiotics?
3) Have you tried a very low carb diet, for at least a few months? A low FODMAP diet?
4) CT Barrister uses lactulose as a rotating alternative to antibiotics.
5) I'd probably try a fecal transplant before I gave up on my pouch. It's being used more for stubborn C. Diff infections, but it's not a crazy thing to try.
6) Are you sure about the diagnosis? Could it be anything besides (or in addition to) pouchitis?
Just some ideas. Good luck!
That is probably all good advice. I certainly would not give up after trying only one or two antibiotics having adverse effects. In my current rotation in which lactulose and xifaxin play key roles, I take cipro or flagyl only one week per month.
Most of the members in my CCFA support group are taking biologics to treat IBD, and they report success with one biologic after another has failed. My GIs have mentioned Remicade in conjunction with treating pouchitis, although they have characterized it as a "last resort" type treatment after others have failed. I am doing well in my current regimen which includes not only the aforementioned rotation of antibiotics and lactulose, but also significant changes in my diet to reduce sugar and carbs as per the advice of Dr. Bo Shen and his disciples (among whom is my GI, who was personally mentored by Dr. Shen and talks to him every week).
Whether you use low FODMAP or Paleo, the culprit is sugar and carbs in causing bacterial overgrowth which in turn causes pouchitis. Getting the bacterial levels to where they should be is imperative in treating chronic pouchitis.
Most of the members in my CCFA support group are taking biologics to treat IBD, and they report success with one biologic after another has failed. My GIs have mentioned Remicade in conjunction with treating pouchitis, although they have characterized it as a "last resort" type treatment after others have failed. I am doing well in my current regimen which includes not only the aforementioned rotation of antibiotics and lactulose, but also significant changes in my diet to reduce sugar and carbs as per the advice of Dr. Bo Shen and his disciples (among whom is my GI, who was personally mentored by Dr. Shen and talks to him every week).
Whether you use low FODMAP or Paleo, the culprit is sugar and carbs in causing bacterial overgrowth which in turn causes pouchitis. Getting the bacterial levels to where they should be is imperative in treating chronic pouchitis.
I guess you have to ask yourself if you want to continue taking medication? There are many pouchers on this site who have given up their jpouch because of chronic pouchitis, and gone back to an ostomy. None of them have regretted their decision and they all say they have a much better quality of life.
Sue
Sue