Hello:

Thank you in advance for any guidance. I will try to keep this short. I am in the midst of determining if I have Crohn's now. Had J-pouch surgery in 2011, followed by some unusual complications even before takedown (and then in addition to takedown, had to have incisional hernia surgery and then a total hysterectomy a year after all that). When I was having output before takedown, my surgeon said he had never seen a J-pouch that looked like mine did at that time.

Anyway, had been having increased frequency and pain with J-Pouch for a while now. On March 20, right as COVID was taking hold, I was up at Albany Med with my surgeon -- who I had not seen in years --  doing a pouch scope and going into small intestine. The pouch looked relatively OK, except some inflammation by the cuff AND a stricture by the inlet. The biopsies then showed  more inflammation, and there was inflammation in the actual small intestine. Also, I should mention that I got extremely sick from the scope itself: horrific pain and vomiting/retching for hours. Trapped gas. They kept me in the hospital all day and then almost overnight. (I finally got out around 5 p.m., only to find out NY was being "shut down" and I had been laid off from my job.)

With everything going on, I didn't talk to my surgeon until more a month later, which is when I found out the biopsy results. The other thing is that even before the scope -- but much more now -- I get the trapped gas, with pain up to shoulder, and abdominal pain and bloating at least a few times a week. They did put me on course of Flagyll.

My surgeon is now ordering an MRI to see if any other narrowing in the small intestine. I know he is trying to rule out/rule in Crohn's...

So my question is, anecdotally: When there is a stricture near the inlet and inflammation in the actual small intestine, is that usually considered Crohn's?

I fear it is, as my brother has Crohn's, and while there was some mention of a concern before my colectomy/J-pouch (due to severe/recurrent C.Diff on top of 22 years of left-sided UC that turned into pancolitis and a colon filled with pseudo-polyps), we really had no choice. 

So I will appreciate anyone who wants to weigh in with their experience, opinion, etc.  I understand, of course, nothing is definitive.

Thank you so much for your time,

Laurie

 

Original Post

Laurie,

Like you, I have strictured J Pouch inlet and inflammation above the J Pouch in the neoterminal ileum. Like you, I had the MRI Enterography, the CT Enterography and the Prometheus Blood Test. All were inconclusive on whether I have Crohn's or not.

Here is my opinion which I have stated repeatedly on this Board. Whether it's Crohn's or not does not matter. It's inflammation and at the end of the day you need to treat it whether it's in your J Pouch or ileum and regardless of what you call it.

Strictures at the J Pouch inlet are VERY common and many people have posted about them. The J Pouch doesn't have a backsplash valve (like the colon does) and the stricture and inflammation above the pouch could be due to backsplash stool.

In my case they grappled with the issue of whether the inflammation pattern is consistent with backsplash stool or not. They think most likely not and therefore I am a tentative Crohn's diagnosis but the tests didn't prove that. The tests IMHO are a waste of money. They should study the inflammation pattern and then decide how to treat it. But guess what? All the treatments for ileal inflammation are the same! So it doesn't matter what label you put on it. It's inflammation and you can either treat it or not. I can - with Remicade.

Threads like yours have been posted many times, and the answer is always the same: whatever you call it, you still need to treat it. I think diagnosis testing isn't something you should spend forever pursuing if no treatment plan is put in place. A treatment plan can be based on where the inflammation is and the MRI will in fact help determine that, but don't worry about the diagnostic aspect.

By the way the MRI Enterography is a 3 hour test and I posted a detailed thread about it. See this thread:

https://www.j-pouch.org/topic/...study-of-small-bowel

Last edited by CTBarrister

Fight like a girl:

My GI at the time of all of my testing, who was a protege of Dr. Shen that took a job at Yale and has since moved on to NYC, essentially said the thing as Dr. Shen. He went back and forth and back and forth on whether it was Crohn's or not. I think that for him, it was really an academic challenge more than anything else, but when the diagnostic testing costing tens of thousands of dollars and which didn't need to spent came back inconclusive, he threw his hands up in the air and said let's just treat it because regardless of what it is, it has to be treated. He was of the opinion that the pattern of inflammation above the Pouch was not totally explained by and consistent with backsplash stool, although he also believed the backsplash was a significant factor in the inflammation in the neoterminal ileum. The final diagnosis was "likely Crohn's, but doesn't matter because the meds I will give you for it are the same meds I would give you for it if we called it something else."

So it's really  "indeterminate IBD" but for insurance reasons it's arbitrarily labeled as Crohn's. Which I find immensely stupid but it is what it is.

Last edited by CTBarrister

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