Suspected narrowing - any advice?

I had 3 endoscopic balloon dilations in late 2021 and early 2022, but my stricture is at the J Pouch inlet, not the outlet. So it was not really impacting on my Pouch function but was concerningly causing stool to backsplash and possibly creating inflammation upstream in the neoterminal ileum. The 3 dilations were all done under conscious sedation at my request and increased the width of my stricture from 7 mm to 11, 15 and then 18 mm. I had a pouchoscopy last month and remain dilated at this time.

You might need multiple dilations. If they try to dilate too much and too aggressively the bowel can be perforated, so they generally go slow and gentle lest you end up with the dreaded bowel perforation and, potentially, sepsis. This is the main concerning complication. I was dilated by an Advanced Endoscopist at Yale, who had done many such procedures. He explained to me in great detail in a Zoom conference his dilation strategy. I would suggest you have an in depth discussion with the doctor who will dilate you on these same issues- namely what is your current width of the stricture and what the initial dilation goal will be in millimeters. They should go a few mm at a time.

Good luck.

Thanks for the reply. Sorry to hear about your stricture but I’m glad that it has been resolved after those procedures.

It’s good to know there are potential solutions available that should help. When I had my chat with the specialist following my initial examination, he did mention that he could feel the narrowing at the lower end. I was really uncomfortable making it hard to complete a proper inspection, which I think is why they want it completed under general anaesthetic.

I feel like the pain and discomfort is located at the cuff joint. But with my capacity also being down, I can’t pin point whether the pouch might have changed shape or I’m just experiencing urgency due to the narrowing. I get the feeling to go then consistently experience difficulty with emptying, which has gradually worsened.

I’m hopeful that I’ll be seen within the next few weeks. Their plan is to do the pouchoscopy, then gradually dilate. He did say they wouldn’t only very slightly stretch things on the day due to the risk of tearing, but I’ll chat through the risks again to be sure.

Thanks 😊

Incomplete emptying can feel like reduced pouch capacity, even though the pouch itself is fine. You can’t add much to a half-full bucket.

Just an update on this.

after attending my hospital for my procedure, the specialist found no issue with narrowing, and therefore didn’t do any dilation on the day.

Whilst I was informed this is good news for me, I’m still experiencing pain and urgency with difficulty emptying. I’ve been booked in for a CT scan to check that there isn’t a dilation at the top end of the pouch, but they aren’t expecting this to be the case.

The pain and urgency is a real problem for getting a good nights sleep. Don’t really know where I go next. The hospital didn’t have much to say in terms of next steps and support, but I will need to wait and see until I get this CT scan.

Occasionally antibiotics help even when there’s no obvious pouchitis. If all else fails you could ask to try an antibiotic course  - Cipro is the most reliable, but some folks prefer metronidazole (Flagyl).