Though you may be seeing a lot more posts about Crohn’s disease in the news lately, there are still a lot of misconceptions about what the disease actually is. About 1.6 million Americans have an Inflammatory Bowel Disease, one of which is Crohn’s, a disease that often causes strictures (a narrowing of the intestine), inflammation, and fistulas (little tunnels that form when a part of your bowel adheres itself to the outside of your body from the inside). It presents differently for everyone, but people often end up with colo- or ileostomy bags, where intestine is brought to the outside of the abdomen and you poop into a smell-proof and leak-proof device in order to give the remainder of your bowel a rest. Besides that, not much is known about the IBD, other than that it suuucks. Here’s what Crohn’s sufferers want you to know.
1. Yo, IBS sufferers, I’m really sympathetic for you, I’ma let you finish, but Crohn’s disease is nothing at all like what you deal with. I’m here for you to talk about diarrhea and how much it sucks, but try and tell me one more time I have no idea what you’re going through and I’m going to lose my mind. Everyone has her shit — you and I literally do, but one is not the same or worse, it’s just different.
2. There’s so much more to Crohn’s than pooping. Don’t get me wrong, there is plenty of pooping involved. But there’s also cramping, and joint pain, and no cure, oh my! Though the disease gets little awareness because people don’t like to talk about bathroom things, there are plenty of other, sexier symptoms that come along with this chronic autoimmune disease.
3. The symptoms are so wide-ranging, it’s actually a very difficult disease to diagnose. People live with Crohn’s for years before being properly diagnosed because some of the broader, aforementioned symptoms could be anything. I’ve heard of people whose doctors thought their patients had the flu, IBS, lupus, mono, cancer, ulcerative colitis (so close!!) and more because Crohn’s symptoms can really be anything.
4. Just because I “don’t look sick,” doesn’t mean I’m not. TBH, this is something I grapple with daily. To look at me, you wouldn’t know my latest enterocutaneous fistula has re-emerged, pushing intestine juice through my belly button like the second coming of Vesuvius and that I’m constantly squirreling away gauze pads and swapping them out in the bathroom all day at work, but I am!
The reason you can’t get away from #InvisibleIllness posts is because every time someone posts one, hundreds of people comment, “OMG same!” So many people are affected by this illness that can’t be seen and so many of those people are afraid to talk about it because of the associations with the word “ostomy.”
It’s also important to note not everyone with Crohn’s has a bag: Tons of people do, but the disease, again, presents so differently in each patient. Some people just need a bowel resection to feel better, some live well on medication or on a certain diet, some grow out of Crohn’s entirely after awhile, and others need entire hunks of their insides removed to even function. The moral of the story is this: Never assume someone has a colostomy bag. But never don’t assume that either. Basically, you never know if someone is shitting while they’re talking to you. Or sick. Or something.
6. I really don’t want your pity. If we wanted you to know how sick we were, we’d rock out with our scars/bags/bellies out all the time. I’d go so far as to say the reason you haven’t heard much about the disease until all these viral posts is because people with Crohn’s make a concerted effort to be bigger than their life-consuming illnesses. They handle exhaustion and complete body coups while you’re stressed about getting eight hours of sleep. They are some of the most put-together people you’ve ever met.