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Ulcerative Colitis
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Posted 4/1/2019 12:01 AM (GMT 0)
Is it possible to be misdiagnosed with UC? I have my 3rd colonoscopy on the 10th and I am praying and hoping for good results.
Does anyone know?
Posted 4/1/2019 12:48 AM (GMT 0)
What are your symptoms and what has your GIs said previously?
Posted 4/1/2019 2:03 AM (GMT 0)
Hi there!
I was diagnosed in 2016 after a bout of food poisoning, my doc performed a colonoscopy which revealed UC. I’ve had mostly unpredictable bm’s, sometimes formed but flat, and I’ve had sporadic days of bleeding. I had an internal hemmie treated by injection as they (my GI) assumed that’s why I was bleeding because I didn’t have any really bad symptoms. Then I was put on Canasa for possible proctitis. I stopped that a month ago. I haven’t had blood at all in 3 weeks. I’m being hopeful.
Posted 4/1/2019 2:58 AM (GMT 0)
I’d suggest seeing another GI to get a 2nd opinion if you are curious. Personally, I’d be surprised if your Dr gave you Remicade if they were not certain. Nothing wrong with you being curious, so no harm in seeing another Dr. I will say when I went into my long remission many years ago that I felt like maybe I never had a real problem! Of course I did, it just went quiet for a long while. I’m a big supporter of getting multiple doctor opinions.
Posted 4/1/2019 6:46 AM (GMT 0)
I've heard of misdiagnoses between UC and crohn's, but not UC versus no ibd. I thought when they took biopsies during colonoscopies they could distinguish between acute and chronic inflammation? It is possible however (and should ideally be the case) that during a remission you have no signs of inflammation, and that remissions can last for years.
Posted 4/1/2019 10:17 AM (GMT 0)
I second the thought that a doctor would not have put you on remicade without a firm diagnosis.
Posted 4/1/2019 2:52 PM (GMT 0)
Odds of misdiagnosis is low. It happens rarely, but usually a change from UC to Crohn's (or Inderterminate/Crohn's-Colitis to Crohn's) is the most common.
Posted 4/1/2019 3:04 PM (GMT 0)
My original diagnosis of UC happened a year ago. This year, I was forced to find a new GI because of insurance changes, and my new GI ordered a small bowel series XR to rule out CD.
Still waiting for radiologist's report...

So, anyway, it was explained to me that 10% of original UC dx's are misdiagnosed. I explained to him that my colonoscopy hadn't showed any "granulomas" or other markers to suggest CD, he shrugged and looked at me like I was a fifth grader...

At this point, I know I should care, but I don't.
Posted 4/1/2019 4:00 PM (GMT 0)
Subsequent scoping does not really have much to say about original diagnosis. The pathology report form the original scoping/diagnosis should have been based on changes in the crypt cell shapes. Only if the original diagnosis had a question mark (e.g., only limited crypt cell changes, or inconsistent biopsies) would subsequent scoping/biopsies be of use in revisiting the diagnosis questions. Otherwise subsequent scoping only speaks to success of treatment.

The safe conclusion if the scope looks really good is that your treatment was very effective. Continue to treat with some sort of maintenance plan. It is risky to conclude the original diagnosis was wrong and to not think about maintenance.

good luck
Posted 4/1/2019 5:25 PM (GMT 0)
I had UC for nearly ten years before succumbing to surgery. Every time I had a scope in the early phases, I hoped for misdiagnosis. Realistically what would it be though? An infection? food poisoning? Fissure? These things would look different, conclude different pathology and respond to drugs - food poisoning doesn't last very long, and after a bout, you're back to normal quickly in my experience. The longer symptoms go on, the less likely it's a misdiagnosis, and if they reoccur after a period of feeling well, it's likely chronic. If it were something treatable, it likely wouldn't have continued to cause symptoms for years or warrant the use of long-term biologic drugs for treatment. Pathology is pretty conclusive. I suppose it might be possible to have pathology be wrong, but it would be an uncommon occurrence and quite unprofessional on the part of the medical facility.
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