My Turn: Living With Crohn’s

My diet is tricky. Most fruits and vegetables are a no-no. Wheat bread? Not a chance. Brown rice? Not going to happen. Nope, my diet consists mostly of PB&J on white bread, potatoes without the skin, and pasta with salt and butter—the types of food that most people are urged to shy away from for health reasons. But in my case, these are the kinds of food that keep me healthy and, with some luck, out of the hospital.

Such is the lot for someone with Crohn's disease.

Since being diagnosed in my early 20s, I've had to schedule trips and activities around what I put into my body and my proximity to a bathroom. Why? Crohn's causes my body to attack food as if it were bad and, when I eat, dispatches white blood cells to deal with the "intruders" accordingly. That in turn produces chronic inflammation of the digestive tract, pain, and diarrhea. Foods high in fiber tend to set me off, hence the bland diet. Eating is a balancing act for me, bouncing between bland and boring and fun and bad, and trying to keep track of what has made me sick in the past and how I'm feeling that day.

At first I viewed Crohn's as simply an inconvenience. It meant that I always needed a bathroom nearby, or that I needed to know where the nearest public restroom was. At one time I knew which hotels on Route 1 in central New Jersey had the best, cleanest bathrooms, just in case I needed to make an emergency pit stop. My gastroenterologist urged me to watch what I ate, which I occasionally did, and even told me that I should keep a food journal, charting what I ate and what effect it had on me.

But I was young, and like others my age thought I'd live forever. I ate what I wanted for the most part, didn't bother with the food journal and gave little thought to all the trips to the bathroom. My doctor prescribed a lot of pills—12 a day at one point—all to deal with my disease and its side effects. Everything seemed fine. It was just a minor nuisance, and the weight I lost was no big deal.

It wasn't until 1998, about five years after I'd been diagnosed, that I began to realize that Crohn's could be serious business. I was tired and could barely move. The uncomfortable pain I'd occasionally felt before blossomed into something far more excruciating, and getting in the fetal position for hours did little to help. My doctor had me take the steroid prednisone on top of the other pills I was taking. I reluctantly did and it helped, but it took a while and the weight of my five-foot-nine frame dropped to between 140 and 150 pounds, down from about 175.

Eventually I started to feel better, and I vowed to be more careful about what I ate. But in 2005 I was sick again. My Crohn's had suddenly flared up, which it can do even when I think I'm eating the right things. I lost more weight, took steroids, and got better for a month or so. Then one evening I found myself racked with abdominal pain. I was throwing up and, for the first time in years, couldn't go to the bathroom. My digestive tract had become so inflamed and swollen that I ended up in the hospital for almost a week. I was allowed nothing to eat but clear liquids and was stuck to an IV that delivered steroids, antibiotics and fluids. The doctors told me that I had an intestinal obstruction that was probably the result of the scar tissue that can form when the intestines are inflamed for so long.

When I got out I was hopeful that I'd feel better. I started to pay closer attention to what I could and couldn't eat. I gave up most high-fiber foods, like broccoli and carrots, entirely. But less than a year later I was at the University of Pennsylvania for surgery to repair a hole in my intestine that led to my bladder, yet another result of regular inflammation. While inside my abdominal cavity, the surgeon cut out chunks of my colon, removed my appendix, and fixed a few other areas that apparently needed fixing.

It took months to start feeling better. But one week shy of a year later I was in the emergency room again, racked with pain. That stay lasted less than 48 hours. It wasn't fun and it wasn't over. Two months later I hit the hospital again, this time for two weeks because of a bad reaction to 6-MP, an immunosuppressant meant to lower my white cell count.

I've been out for a few months now and hope to make it a full year without a hospital stay. I'm cautiously optimistic. Multiple stays in the hospital have taught me that I could be there again tomorrow without notice, so I'd better make the best of today. I've started to jog and I am vigilant about sticking to my strict diet.

I also realize that I'm lucky. As bad as I've had it, I know that there are others who have it much worse. Other Crohn's patients have had multiple surgeries. Some have to use colostomy bags, or they have had the disease spread to areas that make their lives much more difficult. They miss school and work and often have to stay home. There are even children who have it, an idea I find unbearable, especially since I have a daughter of my own.

For my part, I'm going to take it one day at a time and do my best to stay healthy by eating better, exercising, and being more aware of what makes my Crohn's flare up. I know I may not be able to avoid another hospital stay. But it gives me comfort to know that I'm doing everything I can to prevent it.