What People Want You to Know About Living With Crohn's Disease

Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes inflammation in the digestive system, but it’s a complicated chronic illness that affects so much more than the amount of time you spend in the restroom. People with Crohn’s disease may also experience abdominal pain, fever, fatigue, mouth sores and a reduced appetite — so life with Crohn’s can be painful and hard to cope with.

Crohn’s disease is more common than you may think — it affects approximately 500,000 Americans. Most people with Crohn’s are diagnosed as young adults, which can make living with the condition even more challenging to manage as they navigate life changes and their health.

It’s important to listen to people with Crohn’s disease in order to understand how best to support them. We asked members of our Mighty community what they want others to know about life with Crohn’s.

Here’s what they had to say: 

1. “It’s not just a ‘pooping’ disease.  Severe fatigue and the side effects from immunosuppressants are my worst symptoms.”

2. “Crohn’s disease often [involves] symptoms outside of the digestive tract. I’ve dealt with extreme fatigue, psoriasis, and eye inflammation [because of my Crohn’s].”

3. “We always have to weigh when to push ourselves versus when to rest. It’s a constant battle between ‘I can’t let this condition rule my life’ and ‘I have to listen to my body.’”

4. “I can eat the same thing [every day], but [how I feel afterward] will be different [every day].”

5. “Sometimes flares happen [all of a sudden] — you’re feeling pretty [well] and then WHAM — [Crohn’s takes over].”

6. “Choosing not to eat foods that cause flare-ups does not make me a picky eater.”

7. “It’s more than just diarrhea [every] now and then.”

8. “Living with [Crohn’s disease] for a long time can cause [serious] mental [illnesses like] medical PTSD.”

9. “I have almost no digestive issues [from Crohn’s disease], yet many other areas of my body are [affected in ways] you cannot see from the outside.”

10. “Medications [to control Crohn’s disease] can just stop working for you for no reason.”

11. “When I say I need a toilet, it means right now, not in a minute!”

12. “[Living with Crohn’s disease can be] exhausting even when you are doing well.”

13. “I look fine. I am not fine.”

14. “I’m doing my best every day.”

15. “Being a friend [who] learns about Crohn’s [can make someone with it] feel so loved.”

16. “I wouldn’t have wanted to know about all of the complications [from Crohn’s disease] when I was first diagnosed, but I would [have wanted] to know you can still enjoy life.”