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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.

Original Post


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.  

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