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New & Confused

Hi everyone,
After having terrible abdominal pain for several days I went to the ER. My blood work had some abnormalities so they did a CT scan with contrast and I was told I had Terminal Ileitis. I was then referred to a surgeon who looked at my scans and told me I have Crohn’s. Two weeks ago I had a colonoscopy, and it was the most painful thing I’ve ever experienced in my life. I am now still waiting on the results of my biopsies, and for the findings to be explained (I was given a paper that said “mild inflammation” was found- but no other info).
I am very confused though. The majority of my symptoms have consisted of nearly constant pain (since I was diagnosed over a month ago), fatigue, lack of appetite, and trouble using the washroom. I know most people with Crohn’s experience substantial bleeding and diarrhea, but that hasn’t really been my experience. I’ve only had diarrhea once, and the rest has been closer to constipation than anything. I also have a lot of back pain. I do have some days that are better than others and sometimes feel worse pain after eating, but that has been it. From the research I’ve done this seems like an odd manifestation of Crohn’s, but I’m not sure. Anyone have any insight on this? Thanks in advance!

  1. Hi , I'm so sorry for all you've gone through.

    I wanted to share with you some articles from our other advocates about IBD + Constipation. I hope you find them helpful!

    Please know that you're not alone. Our community + forums here and our community on Facebook are filled with patients just like yourself - great place to ask questions and hear about others experiences.

    We're thinking of you!

    Amanda ( Team Member)

    1. Update: So after being told 2 months ago I have Crohn’s after inflammation was found on my CT, today I was told that I just have IBS. Apparently my colonoscopy didn’t show any inflammation (despite the nurses telling me the doctor found inflammation) so that means I don’t have IBD, and it must be IBS. I was also told the initial inflammation “could have been some kind of infection”. I am now very confused and don’t know how to feel. Many think I should be thankful it’s not Crohn's, but none of it makes sense to me. How did they go from being certain it was Crohn’s to being certain it’s not? What about the nearly constant terrible pain I’ve been in for the last 2 months? What about the weight loss and lack of appetite? As all the other symptoms that led them to believe it was Crohn’s initially?

      Anyone else experience something like this?

      1. I'm so sorry for your confusion, and for not getting straightforward answers from your doctors. It took me a long time to get diagnosed with Crohns, and the colonoscopy was not the test that led my doctor to the diagnosis - it was the pill cam. I would recommend advocating for additional testing based on your constant symptoms, or encourage seeking out a second opinion.

        Thinking of you!

        Amanda ( Team Member)

      2. Sorry, you are having such a nightmare @rpearsy!

        I am afraid I have heard this story so many times, here and elsewhere in the community! I agree with Amanda that further testing should be requested. A pill cam is a good place to start! And if needed, a second opinion from someone else. A friend of mine was only diagnosed when he went for private tests which his employer's insurance paid for.

        As for the initial question, it's a pretty common misconception that Crohn's usually presents as diarrhea. Many people have constipation; sometimes alternating between the two and others JUST having constipation.

        I am sorry I can't just give you a definitive answer. Inflammatory bowel disease can be so tricky to diagnose, and to treat!

        Good luck,
        ~ Sahara (team member)

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