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My most recent scope showed this I was diagnosed with UC 20+ years ago and for the first time I’m being told I might have Chron’s. I’m meeting with my new specialist in a couple weeks to discuss treatment and I’ll see what he says about it.
I feel like I’ve also seen some people post about “backsplash” up the ileum from the pouch that can cause inflammation? I’m not sure if that would prevent different than ulcerations though.
I would be interested to hear what treatment you pursue. This is new territory for me.

Yes, I have a pouch 30 years old and scattered, irregular ulcerations were spotted in my lower neoterminal ileum after 15 years (in about 2007) and attributed to backsplash stool due to the irregular pattern of inflammation and the placement of the ulcerations- although that diagnosis wasn't certain. Perhaps corroborating the diagnosis is that my inflammation at the J Pouch inlet has worsened in the last 15 years and I was dilated 3 times in late 2021 and early 2022. I have recently revisited the issue with my GI and he told me recent science and analysis is that it is NOT CROHN's DISEASE. Instead it is a new as yet unidentified or unnamed inflammatory bowel disease process caused by autoimmune disorder that surgery does not and was not ever intended to cure. So in that sense, it isn't really a surprise.

The key issue is how to treat it. My GI says that treatment is all the other modalities that are and have been used, because at this point the new and as yet unidentified disease has baffled experts as to what is causing it. But it's not thought to have been "it's Crohn's and they got the diagnosis wrong." That thinking has gone out the window like so much stale bathwater. And it's kind of pointless thinking anyway,!because regardless of what you call it, you have it and need to treat it. It's inflammation.

Jacqueline- your timeline of the condition appearing is same as mine- 15 years. It's a lot of backsplashing happening in that period. 8 stools a day, 365 a year, 15 years. 43,800 stools is a SHITLOAD of stool. LOL.😁

By the way, the 3 of us posters in this thread are by far not the only 15 plus year Pouch patients who have posted about ulcerations being discovered in the ileum long after surgery. It's kind of common sense that Crohn's didn't start 15 years after surgery if "you always had it." But you didn't always have it.  Much like the thinking that the Earth was flat eventually got dismissed, after being "established science" until 1500 or so, so are we evolving in our thinking about bowel disease. It's a new disease process. If you want to think of names for it you can. But Crohn's isn't it.

Last edited by CTBarrister
@Jacqueline posted:

And the not chrohns but dont know what it you think that's about not getting backlash for misdiagnoses?

Funny though, like you said we are 15 years out no problems ,then developing ulceration?


Jackie - as to the first paragraph above: No- I do not think that, at all. As I posted above, the science on this has changed, and either you move forward with the 21st century scientific thinking, or stay with what is now outdated thinking as I posted above. There are some very current studies and seminars on this which have been posted elsewhere on the board and my GI, who chooses to keep himself updated on current scientific thinking, has also mentioned said studies.

As far as the second part of your post- I did not go 15 years with no problems. There were problems in the J Pouch. There were no problems in the neoterminal ileum. There has been a debate going on for 15 years as to whether that is because of the cumulative effects of backlash stool, a new disease process or both. I think that the current thinking is it's both.

Last edited by CTBarrister

Hi Jacqueline

I have recently had 3 tiny ulcers found the above the pouch in the ileum, i’m not sure if that’s the terminal ileum or not.

Strangely though there is no inflammation around them or signs of Crohn’s disease.

They have been causing me to be anemic for years as they bleed, so i’m having several sessions of a laser type coagulation that burns them closed, which should hopefully heal them indefinitely.

My surgeon says that the ulcers can just happen like in people with Colon’s, he refused to diagnose me with anything like Crohn’s, as i also have no Crohn’s like symptoms.

I just thought i’d let you know


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