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Is it possible to have IBD and not show up on colonoscopy

  • By Knm08280

    Hello!
    For the past 2 years I’ve been having chronic diarrhea, cramping in my lower right abdomen (but sometimes left). I’ve cut out almost everything from my diet including gluten but I’m constantly sick (going to the bathroom 5-9 times a day when I work out it’s more 12-15 times a day). My 1st cousin has ulcerative colitis and I had blood in my stool occasionally so I was so sure I had that.
    But I just had a colonoscopy and my dr said it looked clear but they did take some biopsies and I have a follow up in a week. I am just so worried about being told I am faking or that it’s just IBS when I am sick 24/7 and have already tried cutting everything out of my diet. I was just wondering if anyone has any other experiences similar to this so I know what to expect moving forward?

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  • By Pam.Kingsland Keymaster

    I’m sorry to hear that you’re going through this, not having a diagnosis and knowing something is wrong is so frustrating, unnerving and exhausting.

    Continue to be your own best advocate, you know your body better than anyone else. Rather than elimination diets, you may want to start with a low residue diet (cooked veggies, meat, no nuts/popcorn, alcohol, no wheat breads/pastas)…from there, slowly start integrating foods and see what your triggers are. Keep a food journal, as it can be hard to remember. Log how many times you are using the bathroom. Bring your “stats” with you to your next doctor appointment. A low hemoglobin/anemia can oftentimes be related to IBD as we “constantly bleed” within…even if it doesn’t show up in the toilet.

    I Hope you find answers soon! Please let us know how your next appointment goes! We are here for you! -Pam (InflammatoryBowelDisease.net team member)

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  • By Amanda Osowski Moderator

    @knm08280

    THIS! I’m sorry for my delayed response, I just saw your question. I actually had several uneventful colonoscopies and biopsies which didn’t lead to definitive diagnosis. I was finally diagnosed with Crohns by using the Pill Cam – it’s a swallowable pill that takes photos inside your digestive tract. Because my disease activity was primarily in my small bowel, this was able to identify it! It took me 6.5 years from onset of symptoms to diagnosis, so my best advice is be persistent, advocate for yourself, and don’t be afraid to see another opinion.

    Wishing you so much luck!

    Amanda
    (InflammatoryBowelDisease.net team member)

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    • By Dave100

      Hi all

      First post but this one stuck out to me! Just wanted to reiterate the camera pill – I suffered for 19 years without answers and had many different cameras and X-rays over the years, always normal. They finally offered me the camera pill and low and behold it got stuck within ten minutes of recording starting and didn’t move. Crohn’s disease was the verdict. (And the camera did pass through me eventually 🙂 )

      I also got sick on a work trip recently in the US and they put me straight into a CAT scan. They told me more about my issues than anyone in the UK ever did. I don’t know whether these things can be asked for under the NHS? It took ages for me to get access to these procedures and they both very quickly gave a bunch of information. And the cat scan doesn’t require a bowel prep, which is always nice!

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  • By Julie Marie Palumbo Moderator

    I am so sorry to hear about your frustrations!

    I agree with Amanda that you have to be your own advocate and be sure to speak up when you think something is not being addressed.

    Secondly, I am glad to hear there were biopsies taken, as that can reveal more than what meets the eye. As a matter of fact, my Crohn’s was not confirmed until I had biopsies taken.

    Do not worry about doctors thinking you are faking it should nothing be confirmed in the colonoscopy. There is always the option of a second opinion from another provider, and other options you can discuss with your doctor!

    And, remember we are all here for you so please keep us updated as you find out more information! 🙂

    –Julie (InflammatoryBowelDisease.net team member)

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  • By jh5191018

    Hi, so sorry to hear about this. I know I am a bit late, but I have experienced this as well in a sense. Well I am diagnosed with UC, but a few years down the road, I was really sick again and got a colonoscopy and it came out normal. I was so frustrated and confused. My doctor said that my colitis must not be active, but I was experiencing everything that I was when I was active. I think theres a fluke sometimes and it could just be that day was better than others? Not sure, but if they are saying that you don’t have it- then ask them for an explanation for your sickness!

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  • By boofox

    I have always had “normal” colonoscopies, but after I showed the Dr. where my worst pain was, he biopsied there, and diagnosed microscopic colitis, collagenous colitis.

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    • By Pam.Kingsland Keymaster

      Thanks for sharing, @boofox. I’m to hear that you finally received some answers. Now that you have a diagnosis, what actions are you taking to relieve the pain? – Pam (team member)

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