I 100% agree kta! My husband and I have been trying to figure out the ropes on how to be referred for a second opinion. My surgeon seems uninterested in doing any tests. Unfortunately, only 2 hospitals in Toronto do Jpouches and, I believe, only 3 surgeons. I am sure one of my problems is pouch prolapse. I make suggestions, but am not heard. I am well versed about my medical condition. Exams/pouchoscopies are always lying down. The pressure in my anal canal and pelvic/genitourinary area is extreme and worsens through the day with gravity. I am 64, menopausal and on low dose steroids for life from secondary Addison's. All 3 are easy contributors to weakened connective tissue. As I said, that is only one issue that is painful. Two, I believe is a stricture or partial blockage of some kind behind the old ostomy site. This is where extreme mid abdominal pain strikes 2 hours after every meal. This intensity lasts for an hour and I moan and use a heating pad. I only pass small bits of dark acidic mush at this time. Then I feel some relief and my next BM is light and well formed (too well formed and dry; like from a colon). The mechanics are just not working right. Sorry for the long spiel. Sometimes, when you get going, there is no stopping. I feel have no power at the moment and my quality of life is terrible. I am typically a very active person.
Thanks for your help and for listening.