You may want to ask about Remicade (or the biosimilar Inflectra). I was on Humira, then Simponi, then Cimzia for my enteropathic arthritis. But when chronic pouchitis developed my GI suggested Remicade infusions along with low dose oral Imuran. It worked well to get me off antibiotics, and I am now on Inflectra. It may not cure the strictured area, but if it reduces the inflammation enough, normal function may resume. I have no idea where your surgeon got the info that pouches only last 20 years.

Jan

Consult an experienced  surgeon, such as Dr. Remzi at NYU,  to re-do your pouch. Sounds like a pouch malfunction.

I’m 40yrs with a J-pouch. What helped me was finding a doctor that specializes in the jpouch. NYU, Mayo Clinic & Cleveland Clinic have a great team.

Good luck, I hope you find something that helps.

@PureSuspect I’m sorry you’re going through this. I know you have several things going on, but I can’t tell how satisfactory (or unsatisfactory) things are when you are on antibiotics. Some of us stay on antibiotics for many years (with good results), but I can’t tell if you’ve tried continuous treatment. The other suggestions above are good options, too. It does sound like you may need a new GI doctor, and I certainly wouldn’t let that surgeon have another go. Maybe that surgeon’s J-pouches only last 20 years, but the well-constructed ones usually do much better.

Oh gosh. Sorry you have been going through all of this. I agree that getting another opinion is a good next step. You might want to see if any of the nationally known top surgeons are doing telehealth visits these days. They may be able to provide a consultation based on your records and a video visit. What I think will get you a good second opinion is speaking with a surgeon who is experienced doing revision surgeries at a premier hospital. If I were considering a reversal surgery, I would limit my search for a surgeon to: Mount Sinai, NYU, Columbia University, Cleveland Clinic, Mayo, Johns Hopkins. (I'm sure there are great places out west but I don't know them since I'm not near there!)

The comment that pouches last only 20 years is, as others have mentioned, nonsensical. I asked my GI about the longevity of a pouch and she said that it's part of your body; it's not like it wears out. I wouldn't use that 20 year number as a basis for any decisions.

For the short-term... have you tried Gas-X to help you sleep?

To get your current doc to help you with an interim solution while you look for a second opinion, why not say that you'd like to put off the surgery until after the pandemic is under control? That will get her to focus about short-term solutions to help you feel better now. After all, this is not the best time to get surgery anyway, so it's a reasonable thing to say.

To elaborate on my comment above: pouchoscopy is often misleading as it  artificially inflates the pouch  with air for inspection. As in my case, after many years of inconclusive scopes (by leading GIs at Mount Sinai and Cornell, whom -by the way- I would still highly recommend, despite the wrong diagnosis and years of unnecessary harsh medical treatments -with no effect), additional exams were necessary (once I went to consult with Dr Remzi at NYU) , such as MRI, barium enema Xray etc,  which revealed the structural problem of the pouch, ultimately leading to pouch re-do by Dr Remzi.  It solved my problem, now 2 years after the pouch redo I am symptom free and do not take any drugs. While before, I was like you.

This all  may not be the solution for you,  but  get the best advise you can before you commit to a drastic solution.

Remzi will not operate unless he sees a structural problem. I do not know where you live, but people travel here, stay in a hotel, to see Dr Remzi. I am sure there are other excellent surgeons, it is just I live in NYC.

Hi All,

I really appreciate your feedback.  I emailed my GI doc to see if she can switch me over to Remicade to see if that helps.  Antibiotics help while I am on them but as soon as I am off the course (usually 10 days), it gets right back to the way it was.  I tolerate Cipro much better than Flagyl.

What my Kaiser CR surgeon said was that he could attempt to remove the structured area but there is a high risk of losing the pouch.  He also mentioned that he could not remove the pouch and create a new one due to the lack of small intestine to work with.

My original CR surgeon was considered one of the best in the SF Bay Area.  He has since retired but his clinic and associates are still operational.  I may reach out to them at some point to see what they advise.  I will look into the other options that were listed as well.

Based on the barium enema from last year, my pouch is functioning just fine.  So it seems that the main problems are persistent pouchitis and stricture.

I sent you a private message

I had my pouch done in 2004 as well. It has its ups and downs, but usually is not so horrid I want it gone. I have been on antibiotics for 14 years straight - it is the only way the pouchitis stays away. I take Augmentin, Cipro and Xifaxan - rotating each for 2 weeks. It works well. I am also now on Humira and that has helped a lot. Definitely talk to as many docs as you can. I say that and I am avoidant in reaching out to docs; I need to follow my own advice. I hope all goes well.