Question - Has anyone ever been misdiagnosed?

Yes!

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. https://www.prometheuslabs.com.../ibd-sgi-diagnostic/

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.

Have to agree with CT here. My GI tries not to focus on labels for the issues he finds during pouchoscopy or blood work.  For him, it’s either clinically significant or not. If it is we treat. If not, we do not treat and move on.

Hi AMB. Yes, I am lucky and have a high-functioning pouch. It was laparoscopic, I don't know about the rectal cuff and it was sewn.

There is such a thing as Crohn's-like pouchitis.  It looks like Crohn's but it is just another type of pouchitis. I had it, and my doc thought I might have Crohn's until he did further research. There are articles on various disorders of the pouch that might be helpful to you.

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.