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When IBD Makes You Question Your Sanity.

When IBD Makes You Question Your Sanity

If you’ve lived with inflammatory bowel disease (IBD) for any length of time, you know all too well how serious it can get. It’s rare, but people have actually died from Crohn’s and UC or the complications that come with the diseases. In the beginning when you’re not very familiar with the conditions (and even sometimes when you’re well acquainted with IBD) you may start to question your sanity. I know I did more than once.


Right after diagnosis, I had a meeting with the GI who diagnosed me. She told me that most people go on to live normal lives. “There are many athletes who do really well and continue their careers,” she assured me, “You’d never know they have IBD!” She also told me that many people flare only once and never have a problem again. While this gave me hope right after my diagnosis with ulcerative colitis and made me feel better, it was NOT helpful.

For me, things never really got “better.”

I was on steroids, nine HUGE orange pills and several other vitamins and supplements a day. The diarrhea and the blood continued. My mom has Crohn’s disease. She’s only had one really bad bout with Crohn’s and has gone on to live a normal life. Why weren’t things improving for me? I remember calling her one afternoon questioning her about the blood. “Oh, well, you’ve been diagnosed with IBD. Things will never be the same again!” Wait a minute… didn’t she just tell me a lot of people went on to live normal lives? And what about my mom’s case?

By the way, I was told by two different GI doctors (not specializing in IBD) that blood was normal because I have UC. Later on, I was told by an IBD expert that blood was NOT ok and I should never accept the fact that I was constantly having GI bleeds. Don’t you just love conflicting information??? Is it really any wonder why patients question the state of their mental health?

With so much clashing information out there, it’s easy to wonder just how sick you really are.

Not to mention the doubters. You know the ones… people in your inner circle who downplay your disease because their uncle’s wife’s cousin’s grandpa is on medications that control his IBD beautifully… you must not be doing something right otherwise you’d be better, too.

Another thing about my own battle with UC was the fact that I was able to work most days (granted, I had the opportunity to work from home when needed). During my worst flare, I was able to work. It wasn’t easy, but I did it. I had to! How else was I going to pay my medical bills? This, too, made me question how sick I really was… and maybe it was all in my head?

Add all this doubt to the steroids we often have to take, (which make you feel crazy anyway) and you really wonder just how sane you are.

The truth is, you’re NOT crazy. You are sick.

You really do have a disease and it really is as bad as it makes you feel. IBD is no picnic. If you didn’t keep up with your treatments, you would be much worse off. It is so important to do your research and look for good resources. Read up and really get to know your disease. Knowledge is power. And it will help you feel a little less crazy when your doctor tells you that bleeding is “normal” when you know for a fact, it isn’t.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    12 months ago

    Oh goodness, I can’t believe a doc told you that bleeding was okay! It really does go to show, like you say, that you must research and gain knowledge about your condition so that you can be your own advocate. Bleeding is never okay!

    Always dancing,
    Elizabeth (team member)

  • Sickforever
    2 years ago

    Having crohns disease definitely has made me question my sanity ! I have severe depression and anxiety because of the fact every morning I wake up I wonder what today will bring, for me usually pain and nausea meds. The fatigue and missing out on the enjoyment of life drive’s me crazy !!!!

  • hbdahlgren
    3 years ago

    I somehow have managed to remain in remission for 11 yrs after having a bowel resection and every complication known to man prior to that (bowel obstruction, fistula, stricture, perforation, etc). I took Imuran for 4 yrs after surgery, then stopped, and knock on wood….So far, so good…

  • Kelly Dabel moderator
    3 years ago

    Thank you for sharing “hbdahlgren”. So glad to hear that you are feeling well. Wishing you continued relief. Thank you for being part of our community. Kelly, Team Member

  • Lisa
    2 years ago

    Very well written. I question my sanity every waking moment. Today I had what I call, “a pain episode”. This one took my breath away. I was driving home praying to God that it stop soon. I was in tears thinking that I do not want to live like this anymore. My pain episode passed but it drained any bit of energy I had. Thanks for sharing this…we are not alone.

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