Okay, I'm 69 and have had my J-pouch almost 16 years. I have been pretty content with my gastrointestinal life. I've been taking multiple anti-diarrheals (tincture of opium, Lomotil, Immodium) to slow things down chronically since surgery -- have been having no serious problems - a little bit of leakage/incontinence, especially at night while sleeping. I wear "depends" so "accidents" do not wind up being major clean-up problems -- just a good wipe-down with a wet-wipe, a new diaper and I'm good to go.
Last year, at my regular every-other-year checkup, my colo-rectal surgeon indicated that my anal opening was very small ...I could corroborate as the pain accompanying insertion of his finger and then the scope (flex sigmoidoscope) was fairly intense. He said he wanted to see me after a year instead of the usual 2 years.
Okay, I saw him yesterday, 11 months after that last exam. He couldn't get his finger in ...I mean, he could have, but he said I would not have enjoyed that at all. He further advised that he was unable to insert the scope ...again, without causing me lots of pain.
I have been noticing that I had to strain/push more and more on the toilet. I'm not very good at self-analysis/diagnosis ...this could have been sneaking up on me for the last four years without me being aware of changes. In order to get my pouch satisfyingly empty I have been pushing ..so hard that I once popped blood vessels in my eye. I also worry about popping an aneurysm in my brain. My wife has been giving me lessons in doing the correct kind of pushing ;-)
He told me that it's not unusual for someone to develop a stricture this many years after the creation of a J-pouch. His advice at this point is for him to dilate my anus under general anesthesia, and see how that works. He told me that very often that takes care of the problems for a long time. Though sometimes, people require re-dilation every few months. Some of his patients learn to do self-dilation and are living happily ever after. He did tell me he recently had a patient, who after 30 years with a J-pouch, developed a stricture which lead to complete blockage and resulted in the removal of the J-pouch and creation of a stoma and use of a bag.
I guess I'm simply hoping that the doc will put me under, stretch things out ...I'll go home and have an easier time on the toilet and that the stretching will NOT have increased the frequency/ amount of my leakage/incontinence.
I will welcome any and all discussion, thoughts and suggestions. I only know one other person locally who has gone down this road. But then, after her J-pouch surgery, her UC migrated to being Crohns and our conditions were so divergent that we didn't really have all that much in common.
Jim in Maine