Crohn’s Disease: What People Don’t Understand

By McKenna Plant, as told to Barbara Brody

I started having Crohn’s disease symptoms when I was 15 and was formally diagnosed about a year later. In a way, I was lucky: Many people wait years before getting the right diagnosis, but I got a jump-start because my father has ulcerative colitis, another form of inflammatory bowel disease (IBD). He rarely talked about it when I was younger — I don’t think I even heard the words “ulcerative colitis” or “inflammatory bowel disease” until I started having symptoms myself, but once I did, he opened up and became my advocate.

In the years since — I’m 29 now — I’ve had a rough ride. One of the hardest things about living with IBD is the unpredictability. One day you could be feeling great and the next you’re curled up in a ball. I’ve found that connecting with others with IBD is immensely helpful. I was initially reluctant to join support groups because I thought that they were only for old people or those who wanted to sit around commiserating about their problems. But after I gave them a try I realized that it’s a relief to be able to open up in a safe space. I’ve also spent a lot of time on Instagram engaging with people who are really vocal about their experience with IBD or just chronic illness in general.

“If you don’t look sick, you can’t be that sick.”

This is a big one for anyone with an invisible illness. I look like a young, healthy, active person, but that doesn’t mean my body isn’t attacking me on the inside.

“You’d feel better if you just ate healthier.”

I wish it were that simple! Crohn’s is a chronic autoimmune ailment, and when I’m in a flare I won’t go near a vegetable. My body can’t even digest a piece of lettuce at that point.

“It’s not a big deal; I have IBS.”

IBD sounds a heck of a lot like IBS (irritable bowel syndrome), but they’re totally different. I fully understand that some people with IBS feel lousy, but it’s not the same thing as having an autoimmune condition. It’s not unusual for people with Crohn’s to develop serious complications including abscesses, bowel obstruction, and fistulas, which is when the body forms a tunnel that connects the intestines to nearby organs or tissue.

I have a fairly severe case of Crohn’s, and I’ve already had to have two surgeries: one that entailed removing about 10 inches of my small intestine and another to create a permanent ostomy, which allows stool to exit my body though an opening (stoma) on my stomach and into an external ostomy bag.

“Just take your medicine and you’ll be fine.”

Even the strongest IBD medications on the market (I get two via infusion every 4 weeks) don’t work for everyone. And sometimes a drug that initially works for you stops working. That’s really scary as a patient because you’re worried you’re going to run out of options. It’s also why fundraising is so important; we need new treatments so that everyone with IBD can get the help they need.

“Getting an ostomy will ruin your life.”

I got my ostomy about 4 years ago, and I wish I had done it sooner! Before I had my ostomy I was constantly worried about where the closest bathroom was. I always kept an emergency kit in my car with an extra pair of underwear, pants, and toilet paper. Do you know how embarrassing it is for a 20-something person to have an accident? You feel like you never want to go out in public again and just want to isolate yourself. Now I can go for a run or take a road trip without being paralyzed with fear.

“It’s better to keep Crohn’s to yourself.”

I know how hard it can be to talk about having IBD, but staying silent is stressful. If you’re able to open up to friends, family, and co-workers, you’ll feel so much better because you won’t have to worry about hiding it. Sharing your story and letting others know what you’re going through also has the potential to make life better for everyone with IBD. I once got into a fight with a flight attendant because I was in the middle of a flare and desperate to use the bathroom as the plane was about to take off. If he had understood more about IBD, he would have known that waiting until the plane reached cruising altitude was not an option.

Talking about IBD is also key to influencing legislators who have the power to enact laws that help you get the best care. Right now many insurance companies require that you try a series of cheaper treatments that don’t help before they’ll pay for more expensive options like biologic drugs. This process, known as “step therapy” or “fail first,” puts us at risk by delaying the right treatment, which can be dangerous.

Many states have recently passed step therapy reform acts, and I’m hoping that California — where I live — will soon join them. I’m also optimistic that federal legislation called the Safe Step Act will be passed in the not-too-distant future.

I hope that by talking to lawmakers, which I’ve done during various advocacy events, they’ll gain a better understanding of why these changes are so important. It’s a pretty amazing feeling to realize that simply sharing your story has the power to impact change on a local and federal level and will have lasting benefits for the IBD community.