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