GUT FEELINGS
Crohn's disease, minus the gross parts
by Christopher Fogg · Denver, Colorado

Hi. I'm Chris. I'm 22, I'm the assistant manager at an independent video store in Denver, and I have Crohn's disease. I've had it since I was seventeen. It is not a fun disease to explain at parties, which is one reason I made this page. Now I can just give people the address.

Let's get this out of the way: Crohn's is a disease of the digestive system, which means a lot of it is about the bathroom. I'm not going to describe any of that. You're welcome. If you have Crohn's, you already know. If you don't, use your imagination, then tone it down a little, then be nice to the next person who has to leave the movie in the middle.

Disclaimer: I rent movies for a living. I am not a doctor. Everything here is my own experience and what I've read. Talk to your gastroenterologist about your own treatment. (That's a stomach-and-intestines doctor. It took me two months to learn to spell it.)

The winter I was seventeen, my stomach started hurting. Not a regular stomach ache. A deep, twisting, can't-stand-up-straight kind. I was tired all the time. I lost weight without trying, which sounds great until your jeans need a belt, and then the belt needs a new hole. I missed a lot of my junior year. Everybody, including me, figured it was the flu, and then a different flu, and then stress about the ACT.

My mom finally dragged me to the doctor in February, and he sent me to a gastroenterologist, Dr. Trosper. Then came the tests. Blood tests. X-rays where you drink a chalky barium shake that tastes like a milkshake made of drywall. And a scope test that I will only say they put you to sleep for, thank God. In March of 1994 she sat my parents and me down and said "Crohn's disease," and my dad said, "Whose disease?" That's how much any of us knew.

For the next four years I was on and off a lot of medicines (see The Medicines). They got me through high school. I graduated with my class in 1995, wearing a gown over a body that was mostly prednisone, but I walked. Then I did two years of college, part-time, and worked at the video store, and had flares and good stretches and more flares.

By the end of 1997 a piece of my small intestine had been inflamed so many times that it had scarred and gotten narrow, and the medicines weren't fixing that. In April 1998, I had surgery. It was the best decision I ever let somebody else make for me. More on that below.

Now: I've had the best year and a half since I was sixteen. I'm working full-time. I got promoted to assistant manager in March. I ate a slice of pizza on my birthday without thinking about it first, and I almost cried into the pepperoni.

• Crohn's disease is an inflammatory bowel disease, or IBD. Your immune system, which is supposed to fight off germs, keeps attacking your own digestive tract instead, and it gets inflamed, swollen and sore.
• It can show up anywhere in the digestive tract, from your mouth to, well, the other end. Most often it's the last part of the small intestine and the beginning of the large intestine. Mine was the end of the small intestine, which is the classic spot. Even my disease isn't original.
• Its cousin is ulcerative colitis, which only affects the large intestine. Doctors lump the two together as IBD.
• It comes and goes. When it's active it's called a flare. When it calms down it's called remission. Remission can last weeks or years.
• Symptoms: belly pain, a lot of bathroom trips, tiredness, weight loss, sometimes fevers. Kids with it sometimes don't grow as fast.
• It usually shows up in your teens or twenties, though it can start at any age.
• Nobody knows exactly what causes it. Probably some mix of your genes, your immune system, and something in your environment. It sometimes runs in families.
• It is NOT caused by stress or by food. I got told it was stress about a hundred times. But stress and certain foods can make symptoms worse for some people. That's a different thing.
• It isn't contagious. You can share my popcorn. Please don't, actually. Get your own.
• It's not the same as irritable bowel syndrome, which is real and miserable in its own way but doesn't cause inflammation or damage.
• Right now there's no cure. But it can be treated, and most people with Crohn's go to school, work, get married, and have regular lives in between the bad stretches.

This is just a general rundown of the kinds of treatment I've had or heard about. What's right for you depends on where your Crohn's is, how bad it is, and a lot of other things. Your gastroenterologist decides that with you, not some guy on the Internet.

Steroids (prednisone). They calm a flare down fast, and they work. But they come with a lot of baggage, so doctors try not to keep you on them long. The one everybody knows is the "moon face": your face gets round and puffy. My senior pictures look like a chipmunk storing up for a hard winter. Also: you're starving all the time, you can't sleep, you get acne, and your mood goes up and down like an elevator. They're not candy. Never stop them suddenly. Your doctor has to taper you off.

Mesalamine (I took Pentasa). An anti-inflammatory that works right in the gut. Lots of capsules, every day. I rattle when I walk. Mild for most people, and some take it for years to help stay in remission.

Immune-suppressing drugs (I take Imuran). These calm down the immune system so it quits attacking. They take a few months to start working, so you have to be patient, and you need regular blood tests to make sure your blood counts are okay. They also let a lot of people get off steroids, which is a big deal.

Remicade. The new kid. It was approved for Crohn's in August 1998, a few months after my surgery. It's a different kind of drug that blocks one of the things your immune system uses to cause inflammation, and you get it by IV at the doctor's office or hospital. It's for moderate to severe Crohn's that hasn't gotten better with the other treatments. I haven't needed it. But a guy in my support group got it this spring, and he went from barely leaving his house to coming to the meeting and arguing with me about movies. Ask your doctor if it might be for you.

A lot of people with Crohn's need surgery at some point. For me, a section of my small intestine, about as long as a ruler, had scarred down so narrow that things couldn't get through easily. Medicine can calm inflammation, but it can't un-scar something.

Dr. Rothman, my surgeon, took out the damaged section and sewed the healthy ends together. I was in the hospital for about a week and off work for six. The first walk down the hospital hallway felt like a marathon. By June I was back at the store. By August I felt better than I had in four years.

Here's the honest part: surgery is not a cure for Crohn's. For a lot of people it eventually comes back, often near where they sewed things together. So I take my Imuran, I go to my checkups, and I'm enjoying every single day of the time in between. If you're scared of surgery, I get it. I was terrified. Ask your doctors every question you've got. For me, it gave me my life back.

The Crohn's & Colitis Foundation of America (CCFA) is the big national group for people with Crohn's and ulcerative colitis. They have chapters all over, support groups, information you can actually understand, and they raise money for research. There's a chapter in the Denver area, and I go to a young adults' support group once a month. It's the only room in Colorado where I'm not the only one who knows where every bathroom in the mall is.

Your doctors. Find a gastroenterologist you can talk to. Dr. Trosper has known me since I was a scared seventeen-year-old in a paper gown, and she still answers my dumb questions without making me feel dumb.

The people around you. My mom and dad, Craig and Jeanne, who drove me to every appointment until I could drive myself and then kept offering anyway. My boss Maria, who never once made me feel bad for missing a shift. My coworkers Gail and Jeremy, who covered for me and never asked why. My best friend Joey, who brought a VCR to the hospital. Tell people what's going on. Most of them will surprise you.

Is it contagious?
No. Sit down.

Did you get it from eating bad food?
No. Nobody gets Crohn's from a bad burrito. Food can bother it once you have it, but food didn't cause it.

Is it because you stress out too much?
No. Though asking me this question every week isn't helping.

Can you eat popcorn? You work at a video store.
I see the irony, believe me. For years, no, because of the narrowed spot. Since the surgery, Dr. Trosper says a little is okay. A little. I savor every kernel.

Is it like cancer?
No. It's a long-term illness, but it's not cancer, and most people with it live a normal life span.

Why didn't you tell me before?
Because it's about my intestines and I was seventeen. Would you have?

Did the surgery hurt?
Not during. After, yes. Laughing was the worst. See Staff Picks.

Are you going to be okay?
Yeah. I think so. Some days are better than others. But yeah.

Between 1994 and 1998 I spent a lot of nights in hospital beds with a rented VCR, a stack of tapes from the store, and a nurse coming in every two hours. Here's the shelf I'd hand you if you're headed in. Rated on a scale of one to five kernels.

If you've got Crohn's, or you just got diagnosed, or your kid did, write me. I'll answer, and I'll probably recommend a movie.

[email protected]

Tickets sold since August 1998:


Last updated Tuesday, September 21, 1999. New release day, so I'm wiped.
I'm a video store guy, not a doctor. Talk to your gastroenterologist.