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Hi -I was diagnosed with UC back in 2013. I had colonoscopy done with multiple different GIs in states and I had done it once in different country as well and all biopsy reports indicated I had UC. Later in 2019 I ended up having IPAA surgery and living with Jpouch since then. End of 2022 I got abscess near anal area and started having joint pain everywhere but this pain is so random (come and go), later in OR my surgeon GI found out I got complex fistula. I was later asked to do biopsy of my pouch and my GI finding was like - "it looks like crohns" and he took some biopsy but pathology reports indicate "no granulomas" and IBD panel blood work was showing IgG range was elevated as well. IgA was fine. Now they are saying I was misdiagnosed and it was corhns to begin with. It was a shocking news to me. It's just hard to believe that multiple GI doctors and pathology reports could be wrong time to time. But after looking into this matter I found out - many other experience similar experience.

I got couple questions for someone who been through this -

  1. Did you first started on biological medication and went for fistula surgery? If yes, how are you doing now and how was that experience? Pros and cons?

  2. If you opt in to get permanent ileostomy for life and started biological to keep inflammation under control or you don't need medication after ileostomy and doing just fine?

  3. Has this happen to someone who had UC and did not get jpouch, decided to kept ileostomy from day 1 and then ended up getting diagnosed with crohns later in life?

All I am trying to find out is - if you opt in for option 1 and later had to move for option 2 because of whatever reasons? I get it this is something vary person to person but overall I am trying to find out if permanent ileostomy is what majority of people with this type of experience ended up doing even after 1-3-5-10-20 years down the road?

Thank you for your time! Please share your stories.

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Many inflammatory bowels disease patients have been tagged as having UC only to develop complications of Crohn's and some of us have been mis-diagnosed with Crohn's only to find we actually have UC. My diagnosis started as ulcerative proctitis, then ulcerative colitis, then at Cleveland Clinic long ago based on x-ray that showed a skipping pattern, diagnosis changed to Crohn's - and stated that way for decades.  But I never developed fistulae or small bowel disease or strictures.  Just dysplasia, and most likely Ulcerative Colitis was the correct diagnosis all along.

Unfortunately the course of the disease itself is often what differentiates the diagnosis. I don't think microscopic  diagnosis is even definitive.  

But there is a test. I had a version of this done to evaluate whether I had adequate levels of 6-MP when I was on that treatment.  It also came back that I most likely had UC which turned out to be correct. It's offered by Prometheus Labs. Here's a link that describes how it's done using serologic, genetic, and inflammation markers. It's probably more accurate now then when I had it.

I've not thought about this for a while. I wonder if it's being used for pouch patients in some capacity - either before surgery or to evaluate when symptoms develop following.  

I was first diagnosed with UC and then Crohns. I did get the Prometheus test before surgery (6 years ago) and it said I Crohns. I was worried that I couldn't have a successful j pouch with Crohns because of stuff I read, but my IBD specialist assured me people with Crohns can have successful pouches. He was right. I've never had a problem.

@Kangaroo thanks for posting your Prometheus experience.  I never knew anyone else who had it done.

I think I was just reading another post of yours about your high-functioning, very excellent pouch. Was yours done laparoscopically?  Was the mucosa all removed or did you keep a rectal cuff?  And do you know if the ileo-anal anastomosis was stapled or sewn?  

Everyone's experiences vary so greatly. I've been thinking a lot about how these differences in the surgery  (along with gender, age, body type) may impact pouch function.  

I had the Prometheus test done back in 2007 or 2008, when lots of time and money were being spent trying to figure out my operative diagnosis. It came back negative for UC and negative for Crohn's. My then GI doc was concerned and upset because I had, and continued to have, obvious visible  inflammation and ulcers in my J Pouch. He had friends of his who were pathologists look at the results - 1 on the east coast and one on the west coast- and both of these experts could not draw any conclusions on the Prometheus results.

Eventually he and others told me the Prometheus test was highly unreliable and we then moved on to both CT and MRI Enterographies, which were also inconclusive. I was then suggested to do the capsule endoscopy and when I heard the associated risks with that procedure, I refused it.

My GI and the successor GI later agreed, upon hard questioning, that the ultimate diagnosis didn't really matter so long as the pouch was responding to treatment, since more or less, all the treatments for Crohn's and UC were the same. It was later also admitted that the thousands and thousands of dollars spent chasing a diagnosis that was never going to be certain anyway was utterly wasted and futile. It was (more or less) an unabashed money grab from people who are scared into allowing it. Just like so many other money grabs that prey upon people who are afraid or made to be concerned into wanting some scientific certainty where none can be had.

I think proper diagnosis is less important than getting proper treatment and getting a response to treatment. We all know it's IBD. What further label we put on inflammation in the bowel in the very great scheme of things and big picture matters much less than how it responds to any treatment we are throwing at it. Based on those assumptions IBD can be treated as inflammation that needs to be controlled. Since then 3 different GIs have agreed that diagnosis does not matter as long as treatment is effective. And I am not sure how much it helps if it's not effective, since all the potential treatments are essentially the same. You have what you have, regardless of the label you slap on it, and still need to treat it.

Last edited by CTBarrister

This is a super helpful thread, thank you for the question and for all the replies. I recognize myself as a person "chasing after a diagnosis" in the hope it will help solve the problem, but as of late, I am slowly coming to understand it doesn't always matter WHAT is causing the problem - it just really matters if it is possible to a) live with it or b) find relief. Yeah, some stuff still needs to be diagnosed - small bowel obstructions immediately come to mind but they are easy to diagnose - but I have not yet to find a G/I doc or surgeon in Seattle who has experience with the day to day issues of living long term with a j-pouch. This forum is the best source of information I have for how to wrangle life with a jpouch.

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