Pouchitis, cuffitis, UC?

My J-pouch is almost a year old, and I’m struggling with inflammation. This is going to be a long post ... sorry, but I feel like I have a lot to explain to get to my questions!
I felt pretty comfortable after takedown, and passing stools wasn’t uncomfortable or limiting. I didn’t really pay attention to how often I passed stools, because it was so much less frequent than before, and so much less painful. But in January I started noticing a little blood on the toilet paper sometimes, and I felt some rectal burning and an increase in urgency. Last month, I had a flex sig, and my doctor said I had really extreme cuffitis ... so much that he couldn’t get the scope all the way into the pouch. He was able to get samples from the pouch for biopsies. He thought it looked suspicious for Crohn’s, but the biopsy results said no, just mild pouchitis. I started canasa suppositories for the cuffitis but didn’t notice much difference ... he said it would take months, though. Before my procedure, he had me try ciprofloxacin just see if it would help, and I thought it did. I had less urgency and less frequency, and a thicker stool consistency. As soon as I finished the antibiotics, though, things went right back to the way they had been, so I thought I might have imagined the improvement. After the biopsy report said pouchitis, he refilled the ciprofloxacin. This time, I definitely noticed a huge difference. I went from 8-12 bms a day to 6-8. The burning and urgency basically disappeared, and the bleeding stopped. I was hopeful that the canasa would ease the cuffitis, and the ciprofloxacin would take care of the pouchitis, and everything would get back to normal. I finished the ciprofloxacin on Friday morning, and by Sunday, I already had an increase in urgency, burning, and frequency. On Sunday night I was up almost every hour. My doctor refilled the ciprofloxacin, and I started it again tonight.
I’ve tried to ask my doctor about long-term strategies for managing pouchitis, and about probiotics and diet. I’m getting a little frustrated because I’m not getting all the information I need. When I see him in person, he’s great. He takes as long as I need, explains everything, and listens to me. But messages are more of a struggle. When I asked about the risk of restarting antibiotics and the long-term strategy, the response was just that he had refilled ciprofloxacin.
So .... now what? I’m relieved that antibiotics make such a difference, but I’m freaked out by the idea of being on them forever. That can’t be good, right? My doctor maintains that it doesn’t matter what I eat, which just doesn’t make any sense. I understand that I may not be able to “cure” myself by diet, but it’s clear that the gut biome is altered by a jpouch, and it seems like diet would make some difference. He also says it’s too late for VSL#3 to help and that it would only have helped if I would have started it right after my last surgery.
Also, I’m a bit freaked out that I’m going to be the unlucky tiny minority with a failed j-pouch. When I had UC, no medicines worked. No food or probiotics made it better or worse. I don’t think I could have done anything to make it better. My body was determined to bring my colon down. Now I’m worried it’s going to do the same thing with the j-pouch.
Having said all that, I still feel a million times better than I did before surgery. The discomfort and urgency are totally manageable, and I would take them over fighting with my colon any day. I feel stronger and healthier than I have in years. I don’t want to give that up, and I’m scared I’m going to get sicker or have to go back to an ostomy, which I hated.
I’ll take any words of wisdom, encouragement, kindness, etc. Thank you all!

Hi Kanva,

I understand how you feel. I've been dealing with pouchitis since January (though I think I had it from takedown). My doctor just keeps giving me Cipro too. This round they want me on it straight for a month, then lower the dose each week for the next 3 weeks and then be off it. I'm in the same boat that everytime I stop it within days my symptoms come back. It's really frustrating. if this long round doesn't work I'm going to ask him to try a biologic. I don't want to be on antibiotics forever. I want a long term solution and not take medicine daily. I hope you find some relief, even if it's short term with antibiotics. Keep us posted.

6 weeks seems very long especially if you’re “flaring”. I can always get an appointment in about 3 days if I’m having issues.

Antibiotics can be difficult to manage so you need to come up with a plan with your GI. I kept getting Thrush from the antibiotics. You should probably rotate and take time off from them to let your body have a “vacation”.

I prefer taking a biological over a long term antibiotics.

Kanva said...
KS, thanks for sharing. I read the thread you posted, and it was encouraging. I’m so scared of having another chronic disease, because my mind translates that to feeling like I did with UC.

I just wanted to point out that it’s not another disease, you still have an IBD. Even people who have their colon removed still have UC, they don’t remove it from your chart. Surgery is not curative, it is just symptom relief.

All 3 of us agree that we are better off with pouchitis than dealing with our former UC symptoms.

KS, thanks for the info. I’ll check out j-pouch.org.
Woogy, I haven’t seen my Mayo doctor since my surgeries, so I’d have to visit again before they’d prescribe meds. I feel like it might be a reasonable thing to do, though. It’s so important to me to know I have a responsive doctor. My doctor at the Mayo Clinic never acts like I’m asking for too much information, which is the way other doctors often make me feel.