First of all, I just want to say how WONDERFUL you all are! I can't believe others are having some of the same issues I am having. You have made a world of difference in my life.
Because of many of your recommendations I went to see Dr Shen last week, was up there for 4 days.
I've had my pouch for 20+ years and no real problems except some blockages until 1.5 years ago when diagnosed with lymphoma. I used to be in the bathroom every 1.5-2 hours and got rather used to it but now it's every 45 minutes oftentimes and it's hard to have a normal life that way. Also I was pushing so hard to get poop out and hardly anything would come out each time.
Dr Shen said it was due to 2 strictures, 1 above pouch and 1 below, a vaginal fistula ( the vagina is in communication with the rectum he said), which he says is one of the worst things he likes to deal with, and bad pouchitis. I was put on cipro,tindazole (sort of like flagl), and proctofoam. He talked about me being on the full strength antibiotics for at least several months which was a bit scary for me. Comments from you all on that??? I asked about all the bad bacteria I already had in my gut and he said he does fecal implants which I read about. He was very nice and I am to return in 1 month for another scope. If this doesn't work, 50-50 chance, he said he had some others tricks he could use.
Anyone else had a vaginal fistula or know much about them??? Thanks for your help.
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It is definitely worse, as you mentioned, when the pouch is full and/or when there is more gas in general.