I am having significant problems with fistulas and narrowing. Now have ongoing gut pain, lack of control etc. Last scope a year ago, Dr. said she could not get the pediatric scope to even pass through. HELP! Saw new GI who said he has to scope no matter what and asked how did I feel about an ileostomy when I had it. Suggesting I just consider taking the pouch down. He has no experience with J- pouch. and wasn't very helpful. Need to find a GI here in Milwaukee area as well-- any one have suggestions ?
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I will say my GI who has experience with J pouch patients and only focuses on IBD patients has said that patients with "old" pouches are coming to him with new IBD symptoms, strictures, fistulas, refractory pouchitis, etc after years of, maybe, having little or no issues.
His saying that to me was HUGE, because I felt like I was slowly going crazy. Like, why after 20ish years was I feeling bad? Why did I develop a fistula? Etc. It was definitely validating.
My surgeon still works with this GI doc, so I have had to occasionally, under anesthesia, have dilations with a proctoscope.
You do not need to "lose your pouch" immediately after this!! I went in, when my stricture was the worst, and he couldn't pass his pinky through the outlet! But we worked on things, and I'm much better now.
I know there's always a chance it can happen again, but he's taught me some self dilation techniques. That helps. And occasionally I have to schedule a dilation under anesthesia. Overall my pouch is good, so we just work on the last few inches to keep it open. Also, my fistula is another story, but things are "better" these days vs in the beginning. Canasa suppositories also seem to help keep things less inflamed which = less stricture issues.
His saying that to me was HUGE, because I felt like I was slowly going crazy. Like, why after 20ish years was I feeling bad? Why did I develop a fistula? Etc. It was definitely validating.
My surgeon still works with this GI doc, so I have had to occasionally, under anesthesia, have dilations with a proctoscope.
You do not need to "lose your pouch" immediately after this!! I went in, when my stricture was the worst, and he couldn't pass his pinky through the outlet! But we worked on things, and I'm much better now.
I know there's always a chance it can happen again, but he's taught me some self dilation techniques. That helps. And occasionally I have to schedule a dilation under anesthesia. Overall my pouch is good, so we just work on the last few inches to keep it open. Also, my fistula is another story, but things are "better" these days vs in the beginning. Canasa suppositories also seem to help keep things less inflamed which = less stricture issues.
thank you for saying there is some hope. I need a Dr. that understands this. They are few and far between.
Find a new doctor, fast. Do not let anyone touch you who has no experience, even if you have to go out of state. You can google gastro surgeons who do what you need. USNews and World Report magazine has a whole thing on gastro people and where you can go. Also, how far in Mayo or Cleveland. If you have to travel, might as well go to the best!