Chronic Cuffitis - Next Steps?

I will obviously update on how the scope/fecal transplant go on Monday. I just want to be prepared for the next steps if I am still sick, which I likely will be (trying not to be too cynical). This is the first time since I got the J-pouch in 2008 that I've EVER thought about getting rid of it. Maybe I'm being impatient, but this is taking a huge toll mentally and I can't keep going on like this much longer.

Kevin you are seeing the jpouch guru, Dr Shen is world famous. that said I hear your frustration. Shen has written extensive papers about pouchitis and I believe has used biologics like Remicade etc. CDiff can be a recurring bitch so while not testing positive for it, he might be on to something. Flagyl is a wondrous drug but also notorious for causing nausea especially over time. Nausea I believe is also sometimes an accompanying symptom of cDiff so maybe that's it. Do you think the nausea might be correlated to Flagyl? What about Cipro have they tried that? Has he scoped you to confirm the pouchitis? Keep at it, my dx has changed to crohn's and my pouch life isn't perfect but I am still glad I have it.

Thank you so much for your response! The nausea comes before I use the Flagyl. I keep getting this nausea that starts creeping up on me. It feels like the feeling when you're starting to get sick and have a really high fever, but I don't have a fever, vomiting, or diarrhea. It's basically the pouchitis feeling without any of the other symptoms. Anyway, I have just been calling my local GI doc and he's just been telling me to take Flagyl for a week. Although that has taken care of it, I've done it three times in the last two months and I don't want to keep taking antibiotics without a confirmed diagnosis.

It's hard to get an appointment with Dr. Shen right away; he's usually booked a few months out but I can usually see his PA within a week or two. Anyway, I'm hoping the scope gives us some more info and we'll see how the second fecal transplant goes. I definitely have some of the same symptoms I had when I had C. diff before, so maybe there's a small amount still in me.

I'm just thinking about my options to treat the Cuffitis, as I have been taking Canasa for 7 months and haven't seen a huge difference. I'm thinking at what point do we try something different? I mean, do I just take Canasa for months/years? Mentally, it's really frustrating being sick this long. It reminds me of when I had colitis before my J-pouch.

I think those are reasonable questions to pose to Shen or his PA. Candidly I really don't think I could offer much more than moral support. Shen is so highly regarded it would be difficult to second guess him. That said I can imagine that he has his own agenda and being who he is, it might be challenging to be heard during your appt. I would encourage you to write your questions down and bring them in with you so you are fixated on getting them answered. I do that with my doc and while she's busy as heck she respects my desire to ask questions and politely addresses them all. mind you this is typically in the three minutes that I have before I get my quarterly dilation scopes.

Do you have your gallbladder? might it be related to food choices? I don't know I never really get nauseous from pouchitis, and don't remember it being an issue when I had my colon. the first few years without my gallbladder was uneventful but in the past year, I have begun getting heartburn/nausea sometimes separate sometimes combined. I am sure it is dietary related but Im too lazy to pay enough attention so I just medicate quickly with omeprazole and comapzine when it starts to appear.

I am not really sure what cuffitis is. I can only guess that it would be an irritated rectum and urgency? I mean my dx has technically changed to crohns and I certainly have my share of irritated rectum but rarely urgency. as to pouchitis, I like to also only take 7 days worth of Flagyl but I have recently noted that while in the past that seemed to be sufficient for me, it seems that's no longer the case so for example I am back on Xifaxin (another choice) but this time I am going to run it 14 days and hopefully kill the pouchitis at least for a while. my doc and I have an agreement that I largely self manage the pouchitis given my long tenure with it. I am also on crohns meds, humira paired with methotrexate so that also has quelled most of my pouchitis. this latest one is probably marathon training induced by ischemia.