Hi J Pouch friends - I have a technical question that I can’t get a surgical answer to for a few weeks. I am now in between step 2 and 3 of my J Pouch - it’s created and sitting in wait. Some following my story may know that I have very high output from my loop for 3 months - some days up to 4,000 ccs. We seemed to have figure out why - I was just diagnosed with another auto immune disease, this is of my mast cells - potentially triggered by the removal of my colon itself. There is limited treatment for it, and one of the symptoms is increased gastric output in normal people, which translates into high output for ostomy folks. I may never slow it down. So, I have been greatly cautioned by my GI doctor to not do my takedown with 4,000 ccs of output, and potentially cut my risk and go to an end ileostomy. My surgical team is against it. I just want to be done with the fear and I like my ostomy, even though it’s high output. I want to go to an end. Question 1) does anyone know how long I can leave my unused J Pouch sitting there diverted, months or years? Question 2) How hard is it to convince a surgeon to take out a good J Pouch, that my body can’t work with. It seems almost impossible to get him to agree in the short run. But I don’t want to destroy my life to prove the J Pouch will fail.
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