You have to describe exactly where that stricture is. At around 7 mm they can't get the flexible scope through the inlet- and at that point you need to get dilated. 2 mm is way narrower than that and would not allow a scope to even get through. So where is it?

This is what the scope says..

The afferent limb contained a benign-appearing, intrinsic severe stenosis measuring 2mm x 2 mm (inner diameter) that was non-traversed.

I thought it was what went into the pouch? Otherwise, I don't know

Chili,

That is sounding like a partial blockage but I am not really sure what it is. I had a stricture at the inlet measuring 7 mm. Doc told me for years I was narrowing and if he couldn't easily get a scope through the inlet I was getting dilated. Summer of 2021 he finally couldn't get scope through 7 at mm. I was dilated 3 times and stretched out to 18 mm.

You've got to find out if this is a partial blockage or a stricture. Stricture can be dilated, and it's fairly common that the inlet gets strictured due to backsplash stool. At 2 mm you cannot get a scope through - maybe some stool is getting through but they wouldn't have gotten scope through to the ileum. Sounds like a stricture or a partial blockage.

Doesn't it seem like they would have had some urgency to fix it....like, before I left? And it's documented so definitely seems like, if it was urgent, they would have immediately fixed it. Thankfully,  I have a call with the surgeon on Monday and hopefully get some resolution.  Makes me a nervous wreck. And, no, I'm able to go to the bathroom....of course, may be questionable if it's a partial blockage but I would think I would have pain or something if even a partial. I'm doing easy foods until Monday.

If you aren’t having any pain then clearly this is passing stool without difficulty, even though it’s quite narrow. Perhaps it’s stretchy. It’s reasonable to be careful with your diet until you’ve gotten more clarification and figured out the plan. I’d expect you to have sedation for a procedure to dilate this.

If you need to be dilated you will be sedated, it is just like having a scope.   They are very, very cautious with dilations because of the dangers of perforation and sepsis.  Getting aggressive and trying to dilate too much all at once increases those risks.  I had a dilation done in 3 stages from 7 mm to 18 mm.  Haven't had to be dilated since.

If there is no pain and stool is passing freely, you do not need to worry, but this situation does need to be addressed before you get to the stage where you are in pain and having trouble evacuating.

Good luck on Monday, let us know what they say as far as next steps.  I would definitely ask your doctor if the scope could be pushed through the inlet, if not, you will need to be rescoped because they did not see what was going on in the neoterminal ileum and if you have these issues, near the inlet it's possible you have inflammation issues above that were not seen by virtue of the stricture.

Did you have to self dialate after these procedures? I've read that keeps it open

And, how often to u do a scope? Like, after they did the dialtion

@chili123 posted:

Did you have to self dialate after these procedures? I've read that keeps it open

No, nor is it possible to self-dilate a stricture at the afferent limb or J Pouch inlet, which I think would be extremely, extremely dangerous. You have an advanced endoscopist do it to lessen the risk of perforation. You do understand that when tissue is stretched it can sometimes rip and sepsis is possible? Fortunately, when that happens, it usually happens during the procedure and they will know it.

It wasn't necessary to scope until long after I had the 3 dilations. I was fine. The dilations worked. I was told it may be needed again in the future but so far so good.

I think you need to look at a diagram of the J Pouch- your question 2 posts above suggests you need to know a bit more about the anatomy under discussion:

Gotcha...the diagram helps a ton!! I totally didn't understand the set up. So the narrowing is my small intestine that is connected to my stomach...I was thinking it was the area that went into the pouch. Is it ever the entire intestine or is it just a section? And I wonder how far up it is. Totally not what I thought....thanks for the diagram

From what you described it's at the afferent limb near the J Pouch inlet which is close to where my stricture was. It's an area that is commonly getting strictured, especially in long term J Pouches, because of backsplash stool. It takes its toll over time. J pouches are not a normal part of the human anatomy, they are man or woman made, and they do not have a backsplash valve like the colon does. Hence, once inflammation develops in this area, it's very difficult to treat over time. In other words it's hard to get rid of inflammation completely in this area.

I was recently told I have one there as well. It makes me extremely nervous. I was put on Skyrisi.

I have lately seen many commercial on Skyrisi. It seems like it's the latest biologic to hit the market. It's good to know there are many options out there now in case one fails. I think if Chili isn't on a drug like Remicade or Skrisi that's in the near future for Chili

There’s another new bio drug being released this sept.

BTW my annual scope is on July 23- 9 days away- and we will find out soon whether the 3 dilations I had in 2021 are still keeping that J Pouch inlet open for maritime traffic.

Keep me posted. Would love to hear how it goes

I'm hopeful they can dialate and fix it....without meds. Fingers crossed....I'm not a med fan

Allycat.....what is the size of yours?

He thinks I have crohns. He ordered a cat scan to see if I have any more strictures. No pouchitis.  He is setting me up with someone else to do the dialation.

I don’t know the size. My GI said she’s not worried about it and she told my surgeon whom I never heard from. I’m trying to ignore this situation.

@chili123 posted:

Keep me posted. Would love to hear how it goes

Had my pouchoscopy yesterday. I copied and pasted the relevant part of the report as follows:

"Findings: There was an ileal pouch The inlet loop was strictured but a pediscope easily traversed it. This was biopsied with a cold forceps for histology. The pouch itself was normal there was minimal cuffitis bx

Impression: - Ileal pouch with stenosis seen. Biopsied. Recommendation: - Return to GI office in 2 years."

Obviously, Remicade continues to be working for the most part. This is the first time since age 9 with UC that I will be going from an annual scope cycle to biannual. Since I am now 61 years old, that's 52 years of annual scopes I will be getting a break from. It's some minor progress.

That's awesome.  Congratulations! Glad to hear that and thanks for the update!

Congrats on the good report @CTBarrister!