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Although there are some older posts about JPouch removal experiences, I am hoping someone could provide additional information. After having my JPouch since 2009 and chronic pouchitis, my intestines were perforated during a balloon dilation for a stricture and now I have an ileostomy with the JPouch disconnected. It has been complicated with skin allergic reactions, prolapse/retraction and also a hernia, but I have been able to eat almost everything I want!

Since the emergency surgery in 2018, I have had numerous bouts of infection or due to new dx of Crohn's. I would like to have it removed but was told by surgeon to not do so. I talked to another surgeon who does robotics (but is not a colorectal surgeon) and he said he could try and remove it unless the adhesions are too extensive. I live in Hawaii and talked to a specialist in LA but the travel would be too hard for me for many reasons.

Recently, even on Cipro the urgency, cramps, some blood and what looks like diarrhea from my disconnected pouch is occurring, so my PCP (appt with new GI is not until April) prescribed Prednisone. Ugh! Down that road again!

My question is related to what everyone says about the surgery being "very complicated." I understand that if there are adhesions extracting from other organs is difficult. I was wondering if that relates to the recovery, if it can be done, or nerve damage or other poor surgery outcomes. I am hoping to get this surgery done as soon as I can. TIA for any advice you can provide!! Much appreciated.  

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It's hard to predict an individual's pouch removal experience, since each pouch will differ in how much it is encrusted with scar tissue/adhesions, and how the particular surgeon handles the procedure. The procedure is sometimes (unpredictably) technically difficult, which translates to a somewhat higher complication rate than less complex surgeries.  If I needed my pouch removed I'd go to great lengths to use a surgeon who has performed the removal procedure many times, to reduce the risk of avoidable complications. Assuming there are no complications the hardest part of the recovery is the healing of the tender "Barbie butt," but folks here have tended to report finding that less difficult than they expected. Perhaps in the meantime you could try budesonide rectal foam (uceris rectal) instead of prednisone, to get less systemic absorption (and fewer side effects).

Hi Scott.

Thanks for your response. I am just trying to find out what kind of recoveries people have experienced. Yes, I was on the rectal version prior but that did not have much positive effect. I also wondered if folks who had the JPouch removed if they closed everything up. I was told it is better to leave the muscles and not close the system. I appreciate your feedback.

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