8 Things People With IBD Wish You’d Stop Saying (and what you should say instead)

Inflammatory Bowel Disease (IBD) refers to either Crohn’s disease or Ulcerative Colitis. It’s chronic inflammation of the digestive tract and is often characterized by severe abdominal pain, nausea, diarrhea, fatigue, and weight loss.

While you might mean well, these are 8 things that those with IBD wish you’d stop saying.

  1. “Is your stomach thing gone yet?”
    • Uh, what? That “stomach thing” is a chronic illness with no cure. So no, it’s not “gone yet”. It will never go away but thanks for asking *eye roll*
    • Instead, ask “How are you feeling?” We’ll be open and honest and we’d love to talk about it!
  2. “My friend/roommate/cousins roommates mom had that! She doesn’t have it anymore.”
    • Not true. She probably doesn’t have it because it will ALWAYS be there. Or if she does have it, you have now annoyed me and her. Even if she had surgery to remove the diseased part of the intestine, it doesn’t “cure” IBD. She may be in remission (where IBD symptoms aren’t currently active) but she still has IBD.
    • Instead…If you truly know someone who struggles with IBD, offer to connect us. We love having people in our community!
  3. “Have you tried….?”
    • Trust me. We’ve tried it all. We’ve researched everything there is to know about our disease. We know our bodies best. Some things work, others don’t and that’s okay!
    • Instead, say nothing.
  4. “How did you get this?”
    • I didn’t forward that email chain in middle school. Kidding – but I didn’t ask for this, it just happened. It’s my body attacking itself and I couldn’t have prevented getting it. With that said, I am doing my best and avoiding known flare triggers so to some degree, I can manage.
    • Instead, ask “Wow, what were your first symptoms?” We’d rather tell you our story and explain how we got to where we are.
  5. “I had the stomach flu last year, I totally get it”
    • That’s laughable. Were you trapped in the bathroom literally all day? Did you have internal bleeding for months on end? Did you starve yourself just to see if it would help but alas, you were still making upwards of 30+ (yes, 30) trips to the bathroom a day? Did you suffer from joint pain? Skin problems? No? Okay. Calm down. The stomach flu goes away. IBD does not.
    • Instead, say nothing. Seriously.
  6. “I have IBS, I totally get it”
    • Similar to #5, you don’t actually understand. Sure, IBS is inconvenient. But it’s not IBD. IBS is much more manageable and doesn’t come with symptoms outside of the GI tract. But, if you have IBS and you’re struggling past what’s normal for IBS, get checked and make sure you don’t have something else going on.
    • Instead, say nothing. Seriously. We know you mean well but it’s not the same.
  7. “But you don’t look sick so that’s good!”
    • In a way, you’re right. But the only problem with not “looking” sick is that no one takes you seriously when you say you have a chronic illness and no one believes you when you’re going through a serious flare.
    • Instead, ask “How are you feeling?” This allows us to tell you the truth. We may be feeling great and we’ve been in remission for a while. Or we may be at the beginning of a flare and we’re struggling. Let us tell you how we feel instead of assuming we’re “okay” because we don’t look sick.
  8. “Should you be eating that?”
    • Yes, I should. I know what’s best for my body and I know what will cause problems. IBD isn’t caused by diet. Diet can help but it isn’t the end all be all. So yes, I can eat this. And since IBDers often struggle with loss of appetite, it’s a pretty big deal that I’m eating anything.
    • Instead, say nothing. We don’t judge your food choices, please don’t judge ours.

If you know someone with IBD and you want to know more, ask them! Or check out the Crohn’s and Colitis Foundation website here to learn more about IBD and how to support the search for a cure.

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“Well, you don’t LOOK sick”

You’re right. I don’t.

Ulcerative Colitis is an invisible disease. I fight it daily. When I’m in remission, I am pretty healthy and can do everything that a healthy person can (except eat salads – I can’t do that).

When I was first diagnosed, many people would say “But you don’t look sick” “Add more fiber, will that help?” “It’ll be fine, you’re not that bad” “When is it over?” “Are you cured yet?” *cue eye-rolls*

When I’m not in remission (like currently) I battle fatigue, achy joints, extreme stomach pain, running to the bathroom multiple times a day (as much as 30+ times a day), lack of appetite, and generally feeling like crap. Every minute of everyday revolves around UC. I have to think about every single minute of every single day and work hard to hopefully reach remission. You may not be able to see the bleeding ulcers in my colon but I promise you, they’re there.

Health and fitness has helped tremendously. I follow a pretty simple diet – no sugars, no grains (NSNG). It’s basically paleo if you want to give it a name. Sugar is shown to be inflammatory so I stay away. It does a great job at triggering a flare for me. But grains? Well, gluten is out for most people with IBD. It causes SEVERE stomach aches for me. I stay away from grains because I have to be low-fiber until I reach remission. After I reach remission, they won’t return to my diet.

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The picture above shows me in the hospital with pancreatitis, 5 days prior to my UC diagnosis. My dad sat with me at the hospital while I cried when they gave me morphine and said “Yep, it’s pancreatitis”. I was supposed to meet my dad for dinner that night. Instead, I met him at home and he drove me to the ER. I knew then that UC was likely in my future and five days later, it was confirmed.

The after picture shows how daily exercise, paleo diet, and taking medication daily has helped me. I am NOT in remission and this definitely may not work for everyone. At any minute, my health could change and I’m aware of that. But yeah, I don’t look sick. I get that. I don’t like looking sick and work hard to make sure I am healthy.