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 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 irritable bowel disease, 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.
7. I am so glad your uncle's wife's cousin is totally cured of Crohn's from her Mediterranean raw food diet, but that did not work for me. Yes! I believe you that she's cured! Yes, I tried that diet too! Yes, I also did go gluten-free for a while! Yeah, I did read that thing about diet and exercise and how it cures people - yeah, no, I'm doing that and it's not working. I'm actually not eating food at all right now and that's not working either! Every Crohn's patient is a special, incurable beautiful butterfly.
8. I will totally talk to your uncle's wife's cousin though. It's a tight-knitted community of IBD-ers, each one more desperate than the last to hear what has worked for other patients. There are plenty of great resources to connect with people (my fave is the Crohn's and Colitis Foundation of America, FYI) and it's always comforting to talk to people who also
have pooped themselves in public just get it.
9. Unless of course your uncle's wife's cousin died of freak Crohn's complications. I don't want to talk about that. Though there is no cure, there are a few people who've died from Crohn's (a 1995 study found as many as 25 of 1,000 people did, though a more recent update to the CCFA's site says Crohn's sufferers have just a "slightly higher" mortality rate than the general population). Actually, I did develop pulmonary hypertension from Crohn's of the lung last year, and - it's a long story. It happens, but it's most likely not going to happen to me, so let's all agree to just not.
10. The absolute rudest thing a person can do is linger in a bathroom. Sure, there's a mirror in there - it's meant for a passing glimpse at your hair on your way out. A bathroom is not a place to primp or chat or stay, it's meant for pooping and peeing. You never know who is sitting in a stall mortified by the sounds her body is making and wishing you would fucking leave already. Get in and get out. Always.
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