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Hi,

This is my first post and I will do my best to be clear about what is going on with me.  In 2000, I was diagnosed with Ulcerative Colitis.  After going through flare-ups that sent me to the ER several times, being unable to get off Prednisone without having a flare-up, and being unable to get the UC into remission, I was given the option to have J-Pouch surgery.  I didn't hesitate to have the J-Pouch procedure done because I didn't want to suffer anymore.  I had the colectomy done in the spring of 2004 and takedown surgery was done three months later.  I felt pretty good after the first few months of having a J-Pouch.  Unfortunately, I had a pretty serious unknown digestive problem that sent me to the ER again in the spring of 2005.  My parents pretty much threw up their hands and said, "We don't know what else to do and don't want you to keep going through this."  I did recover from the ailment but was left to wonder what else could be done.  I got married later that summer and moved in with my wife.  My J-Pouch was doing okay for the next few years although I did deal with some minor blockages here and there.  Then in May of 2010, I had to be hospitalized due to severe pouchitis.  It was a nightmare!  Since then I have been dealing with off and on pouchitis problems and taking antibiotics each time I feel they are needed.  The blockages have gone away, thankfully.  In April of 2018, I developed a fistula.  I started seeing a new GI doctor at Kaiser and she scheduled me for a pouchoscopy.  After seeing that there was a narrowing of my upper-pouch/lower intestine area along with my fistula, she diagnosed me with Crohn's Disease and put me on Humira.  Then this past year, I had yet another scope done by a different GI doctor and he determined that I had a stricture in my upper-pouch area.  So long story short, I had a few examinations/tests done and my GI doc and colorectal surgeon (not the one who did the J-Pouch) decided that I should have my J-Pouch removed and have permanent ileostomy surgery.  This was due to my chronic pouchitis, stricture, fistula, and that the colorectal surgeon said to me that J-pouches only last about 20 years.  I recently turned 41 years old and am really hesitant to have my J-pouch removed and live with a bag on my stomach for the rest of my life.  I hate to think of myself as being unattractive to my girlfriend or anyone else.  I lived with an ostomy bag for three months between surgeries and realized it's pros and cons.  My GI doc said I cannot have any procedures done, such as balloon dilation, to help with the stricture without serious risks.  I am stuck not knowing what to do now.  I go to the restroom over 10 times per day.  I struggle to go to sleep because I keep having to get up to use the restroom mostly due to gas and whatever is in my pouch keeping me from relaxing.  Normally I  would ask my GI doc for antibiotics but I just think she will keep telling me there is nothing more she can do for me and that surgery is my only option.  I would like to hear any feedback or advice from you all.  I have done lots of research on my condition but have not reached out to others who know what I am going through.  Thank you for your time.

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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

@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 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.

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