I forgot to add in my first post that I’ve had my pouch since my surgery at the Mayo in 1981. I’m beginning to think that scar tissue around the pouch might be compounding issues I’m have with bladder pain. Would love to know if any other “old timers” are experiencing similar problems.
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I am pleased that your pouch has lasted as long as it has. That gives me hope!
Sara Marie, in all these years, I have only had pouchitis one time and 2 kinks—-one resolved with surgery and the other resolved on its own with a gastric tube. You’ve got a lot of hope!
I don't know if I have had pouchitis. I have definitely had inflammation in that area. I have had a bunch of obstructions/kinks. They all resolved on their own. I went to the hospital the first time it happened because I didn't know what it was. They were increasing in frequency until I started taking psyllium. Now they seem to have stopped (knock on wood). Seems like the psyllium has helped my guts in so many ways. I have never had a pouchoscopy since they built the pouch in 2004. I guess I should connect with someone who knows j-pouches but I haven't really found anyone in my area. Also I'm just not keen on anyone messing around in there. Seems like a recipe for irritation.
I know exactly what you mean. My second obstruction happened 1,000 miles from home! The first hospital I went to was clueless, so they transferred me to a larger hospital. The surgeon there did a colonoscopy and advised waiting it out because if he had to operate, I would lose my pouch. Thankfully, after 10 days with a tube, the obstruction resolved. Are you near a metropolitan area with a medical school teaching hospital? That might be your best option. You need a gastroenterologist who is familiar with J pouches.
There is a medical center at the University of Texas in Austin where I live. Do you think that's a good place to look? There is also a GI who does j-pouch surgery, but I don't know if she cares about what happens to people after she does the surgery. I have tried to get in touch with her office but have had no luck.
I think UT Austin would be a very good place to check out. Do you have anyone who could refer you to UT? Do you have a primary or family physician who would be willing to do a referral? In the meantime, perhaps a referral would help get you to the the “hard to reach” GI. If if she doesn’t want to see you, she might know of someone who would. Be a squeaky wheel! You definitely need to have someone to go to in case of an emergency. Please do this soon, and keep me updated. I’m eager to hear of your progress.
Yes I’d like to be connected with someone before anything serious happens. The odds are against me at this point!
I hope UT works out.