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Hi all,

I’ve had my j pouch since 2013. There have been good days and bad days, but overall the pouch has been great for me. I’ve had occasional cuffitis in the past and maintaining consistent pouch function has sometime been challenging, but it’s always been minor enough for me to treat at home through diet.

Last year was probably the best year I've had in terms of pouch function (I was feeling healthy, gaining weight, eating/drinking what I wanted etc). However, at the end of the year, I started to experience sharp pain in my pouch (around the cuff/sphincter) and difficulty emptying.

Due to me moving cities it took a while to get a referral and I wasn’t able to see a specialist until March this year (the UK NHS can sometimes be very slow). As I suspected, they think that I am experiencing some narrowing, and they commented on difficulty completing the examination due to how narrow things feel down there. I feel like the pain is around the top of my sphincter/cuff, but I do have more urgency now as a result of the pain and I feel like my pouch capacity is down too.

They decided to place me on a urgent list for day surgery under general anesthetic to complete a pouchoscopy. They would then perform any required dilation at the same time.

Frustratingly, I got a chest infection late march which turned into pneumonia, resulting in my investigation getting delayed. I am finally due to have my pouchoscopy/dilation completed this month, but I am conscious that my situation has been allowed to deteriorate during this time.

I'd really love to hear any positive outcomes people have experienced after experiencing a stricture and dilation. I've been persevering with this for so many months now that I'm worried about whether I will be able to return to how I was before. Has anyone had success in returning back to normal following the dilation procedure?

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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.

Last edited by CTBarrister

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 😊

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.

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