Luc, 14, has such a severe gastrointestinal disease that his doctors had to remove his colon. But his sharp sense of humor is helping him cope—and raise awareness.
by Luc Hyman as told to Jane Bianchi
Imagine having to down more than 40 pills every day and never eating ice cream or cake or burritos (in my opinion, the best food of all time!). And when your friends want to grab some pizza, there is nothing for you to eat. Even broccoli is off-limits. Welcome to my life!
You see, in the spring of 2012, I got really sick and felt exhausted, and I spent almost a whole month in the hospital while doctors figured out what was causing my painful stomachaches, fevers, and diarrhea. I was eventually diagnosed with a condition called ulcerative colitis, which is a form of inflammatory bowel disease (IBD). Basically, it means that my immune system often overreacts, causing sores along the inside of my digestive tract. Scientists aren’t sure why people get IBD, but they think it is likely a result of some combination of genes, an oversensitive immune system, and an environmental trigger that is often unknown.
What made all of this harder was that I had to miss a lot of school. And when I was able to go, it was hard for my fifth-grade classmates to understand what I was going through. Since my condition isn’t like the chicken pox or a broken arm—something you can see—kids would say, “You don’t look sick.”
When I’d tell them the name of my disease, they’d stare at me blankly. IBD is such a terrible disease, but I realized most people don’t even know it exists.
To be fair, I had never heard of ulcerative colitis either. But once I was diagnosed, I was shocked to learn that it is chronic (so I’ll have it forever) and doesn’t have a cure.
In the beginning, some doctors would talk to me either like I was in medical school (and use big, scientific words that I didn’t understand) or like I was 2 years old (“Aw, does your tummy hurt?”). But now, after spending so much time with doctors, I understand all those medical terms!
THE ROAD TO RECOVERY
That autumn, things got even worse. My condition became so severe that I had to have three surgeries over the course of seven months to remove my colon and then reattach my intestines. (Yep, it’s true: You can live without your colon!) I was in a lot of pain afterward, but the surgeries helped prevent the disease from hurting me even more.
While I was in the hospital, I was so weak that I had to lie in bed a lot to rest and sleep. But I was able to entertain myself by pulling pranks on the nurses. I’d say to them, “Have you seen Fluffy?” and they’d ask, “Who’s Fluffy?” I’d be like, “It’s my pet ferret, and he’s on the loose!”
Animals weren’t allowed in the hospital, so the freaked-out look on their faces was priceless! After a few moments, I’d tell them I was only joking—and they’d smile.
HAVING THE LAST LAUGH
The good news about IBD is that when you treat it correctly, you can get a ton of relief from symptoms. It took about a year and a half of trial and error, but I’m happy to report that my doctors and I have figured out a treatment plan that’s helping me feel well again.
I know that a lot of the details about IBD are kind of icky, but I don’t focus on that part. If you try, you can see the funny side in everything. When I first started feeling better, I wasn’t in good enough physical condition to play sports, but I wanted to do something. So I gathered the courage to try stand-up comedy during a local open mic night.
I framed the way I lost my colon as if I were breaking up with it. I was like: “It’s not you, it’s me... I just think we want different things right now. I want to live. No, no, there’s no other colon.” I got huge laughs! And I’ve been performing stand-up regularly ever since.
I’ve also been devoting a lot of time to helping the Crohn’s and Colitis Foundation of America (CCFA), an amazing nonprofit dedicated to increasing awareness of IBD and raising money for IBD research.
They hold a 2-mile Take Steps Walk each year in my hometown of New York City, and in 2013, I raised almost $12,000 for it in eight days. Last year, I collected more than $72,000 over three months. I was even given the “Honored Hero” award.
To accept it, they asked me to give a five-minute inspirational speech in front of about 1,000 people! I love supporting CCFA because I hope to help scientists find better medications for IBD—and one day, maybe even a cure. (They actually think they will find one during my lifetime!)
During the last walk, about 100 of my friends and classmates walked with me and chanted the name of my fund-raising team: “No Colon, Still Rollin’.” I even put that phrase on team T-shirts!
That experience made me smile and reminds me that if you stay positive, you can find humor in any situation.
3 Things Luc Wants You to Know
1. Never give up. When life gets hard, you may feel like throwing in the towel, but you’ll get through it. You’re much stronger than you think.
2. Chill out. Having a serious disease gives me perspective. Life’s too short to worry about the small stuff! If something is bugging you, ask yourself: Does it really matter in the long term?
3. Be considerate. Treat someone with an illness like you would treat any other kid. And if that person gives you short answers, stop asking questions—he or she may not feel comfortable talking about the disease.
Image Credit: Stephanie Diani/Getty Images