Different diagnosis .. indeterminate colitis

Hi guys. New here so will try to cut down my story so I don’t ramble on!! Basically I have had many symptoms of diarrhea, cramps, fatigue, frequent sudden urge to go and occasional blood in stool. Afteron and off nothing happening I’ve had 2 laparoscopy done and they found part of my caecum bowel is active and long. I had a colonoscopy yesterday and on the diagnosis feedback the doctor said I have indeterminate colitis. I had mild inflammation and he took around 5 biopsies of the caecum and ilieum area. So I went home realised and coming to terms that I have IBD… I was relieved in a way to finally get a diagnosis. Anyway. I had a follow up review today with a gastro doctor. Who didn’t know me up until today and basically told me I have IBS and that I need to see a dietician… I didn’t get a chance to explain that I sometime have blood in my stool or that I suffer with fatigue. Joint pain and sore eyes, which I know are other symptoms of IBD. Anyway what I’m asking is has anyone else been wrongly diagnosed, and also should I just believe the doctor from today or what?! I kind of believe the one who was actually inside my colon having the look!!! Feeling pretty low again not knowing what’s going on! Thanks!!


Community Answers
  • thedancingcrohnie moderator
    2 weeks ago

    I can completely can relate to how you feel. I too felt this way when I was first diagnosed.

    Of course, I am not a doctor, but if you have blood in your stool that means there is something more going on than just IBS. I would definitely get a second opinion. I would also make sure you see someone who specializes in IBD.

    Good luck! Don’t stop until you find answers that resonate with you. We are here for support!

    Always dancing,
    Elizabeth (team member)

  • Marisa Lauren Troy moderator
    2 weeks ago

    Hi there! I can understand how lost you must feel. It is my opinion that you get your records from the first doctor you saw and find a GI who specializes in IBD, if possible. If the test was done correctly and the GI who performed it found inflammation, took biopsies and whatever else needs to be done to make a true diagnosis of inflammatory bowel disease than you have IBD. The type might be unknown for now but once diagnosed properly, you will always have the disease. Some people with IBD also have IBS but that doesn’t negate the fact that you do have a type of inflammatory bowel disease. Hoping you can see a doctor who can help straighten things out for you. Please know we are always here for support. Keep us posted! ~Marisa (Team Member)

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