36 Things People With Inflammatory Bowel Disease Wish Others Understood

Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis affect more than 1.6 million people in the United States, according to the Crohn’s & Colitis Foundation of America. They are painful, medically incurable diseases that attack the digestive system. Many patients require numerous hospitalizations and surgery.

“It’s difficult for people who are not affected by inflammatory bowel diseases to grasp how debilitating Crohn’s or ulcerative colitis can be,” said Michael Osso, president and CEO of the Crohn’s & Colitis Foundation of America. “These unpredictable, incurable diseases can cause immense physical pain that, often times, isn’t visible to the average person. Individuals with IBD may appear healthy on the outside but internally they are struggling with inflammation, pain, nausea and cramping, along with a wide array of issues outside of the gut. It is our job to educate others about these diseases and how they are more than just a bathroom disease.”

The Mighty teamed up with the Crohn’s & Colitis Foundation of America to ask our readers affected by Crohn’s disease and ulcerative colitis what they wish the world understood about their condition.

Here’s what they had to say:

1. “It has nothing to do with what you’re eating. Please stop pushing food fads on us!” — Olivia A.

2. “The pain is worse than your period.” — Ashley M.

3. “No, that thing they advertised on TV about upset stomachs is not going to cure me.” — Crystal S.

4. “When I have to go… I have to go now.” — Stephen B.

5. “People often feel awkward and uncomfortable when they see me going through a flare up because I clutch my stomach. Don’t worry, you don’t need to do anything. The pain will pass and I will be OK. I am used to this and I know how to handle it.” — Jillian S.

6. “That I have no control over the symptoms of this disease.” — Ruth A.

7. “When I say I’m tired, it means a type of exhaustion that no one could push through. I just can’t do anymore and I can’t go anywhere. I have to decide what is most important to me on a daily basis and those are the things I choose to do and anything else is put on the back burner.” — Stacey S.

8. “Although I most times have a smile on my face… I truly feel like crap.” — Jill H.

9. “IBD should be something you can talk about and have others not be grossed out by it.” — Amy

10. “I really do have to take ‘all that medicine’ or I will end up in the hospital.” — Sarah

11. “It’s autoimmune. Nobody did anything wrong. It’s your body doing it to itself…” — Margaret B.

12. “That it isn’t ‘just diarrhea.’” — Jo P.

13. “It’s a real illness that doesn’t ever truly go away, even after surgery.” — JoAnne C.

14. “Just because I don’t look sick, doesn’t mean I’m not sick.” — Jenn H.

15. “No, it’s not something I ate. Yes, I was in the bathroom for an hour.” — Jessica P.

16. “That employers should be more understanding. A lot are not.” — Diana M.

17. “IBD is not IBS.” — Russell G.

18. “It’s completely unpredictable.” — Ellen C.

19. “I can’t control how I’m OK one minute and in the bathroom in intense pain the next.” — Chelsea M.

20. “IBD can make you lose weight, but it can also make you gain a lot of weight too.” — Wendy H.

21. “It can make you so tired. Even when you don’t have other symptoms.” — Hayley F.

22. “It’s not my ‘tummy.’” — Ivey R.

23. “Some/most days I cannot just get in the car and go somewhere. You better have a bathroom route planned if you want to take me somewhere.” — Stacie C.

24. “One minute you might feel perfectly fine but the next minute your body changes its mind and vice versa.” — Daniella L.

25. “It’s unique. Changing to a diet you like won’t magically make it better.” — Mike S.

26. “Even a ‘safe’ food sometimes isn’t.” — Gina W.

27. “It’s never going to go away. It’s part of daily life for you.” — Heddalynn S.

28. “I am ‘allowed’ to eat anything I want. I am a grown-up. Also, after having the disease for 27 years, I have kinda figured out what to do.” — Beth B.

29. “IBD never takes a vacation…it is a daily struggle to make sure we eat the right things.” — Nancy T.

30. “Sometimes I have to cancel plans. I’m not antisocial and it’s not about you. I’m sick and I am doing all I can.” — Amira B.

31. “My normal is not like yours.” — Lisa P.

32. “It’s like being in the early stages of labor and the flu every day…” — Kimberly I.

33. “No, I can’t hold it.” — Anna M.

34. “Taking a few immodium and getting back to work isn’t going to help.” — Johnathon G.

35. “Children can get it too. My son is 11 and has been battling for two years now.” — Joy F.

36. “It’s a serious, complex condition that is different for everyone and affects many aspects of a person’s life. Even though we might look ‘OK’ we are dealing with so much more than the average person. What we need most from others is patience, understanding and encouragement.” — Shaina W.

*Some answers have been edited and shortened

For more info on IBD, be sure to visit Crohn’s & Colitis Foundation of America’s Facebook page.