Louise Chang, MD
In 2006, Alexander Noyes was on tour with one of the hottest pop bands in the country, the Jonas Brothers. At just 20 years old, he was playing drums in front of thousands of fans. But Noyes found that on some nights, it was an effort just to get up on stage.
"There were a couple of times where I'd be throwing up minutes before the show," Noyes, now 24, remembers. "I'd go through the motions, then, as quick as I could I'd get off stage and get back to trying to get myself better."
Noyes had been diagnosed with Crohn's disease when he was 18 and a freshman at Wagner College in New York. At the time, he didn't think his condition was a big deal.
"I think some part of you is in denial at that point, especially at that age. You kind of have a feeling of invincibility," he says. "I've talked to other people who have Crohn's disease ... they go through that period of time when they think that they're still bigger than the disease."
Noyes threw out the pamphlets his doctor had given him, along with his medication.
Then he went on tour with the Jonas Brothers, and Noyes discovered that he wasn't bigger than his disease.
After a year-and-a-half of hectic days and long nights on the road, he was feeling sick all the time. He went back to his doctor, who told him that his health had gone downhill and his Crohn's had progressed. "I had gone through so many flare-ups that the scar tissue in my small intestine was so thick, there were sections of my intestine where food could not pass through," he says.
In December 2007, Noyes had surgery to treat his Crohn's. Since then, he has gotten a lot more serious about taking care of his condition, and he's feeling much better as a result.
Noyes is now an advocate for Crohn's disease, sharing what he's learned on his road back to good health. WebMD asked Noyes, and two Crohn's specialists, to offer their tips on how to avoid common mistakes and stay flare-free.
Crohn's is a complicated disease and the treatments are always evolving. So it's best to be seen by an experienced gastroenterologist.
"The care of a patient with inflammatory bowel disease now requires an increasing degree of specialization," says Joshua Korzenik, MD, director of the Crohn's and Ulcerative Colitis Center at Massachusetts General Hospital. "It's important to go to somebody who really knows your disease."
Your treatment doesn't end with your GI doctor. It should involve a team of specialists, which can include pathologists, radiologists, and nutritionists.
Treating Crohn's isn't a one-time deal. It's a long-term strategy. Even if you're feeling better, don't stop taking your medication without your doctor's advice.
"A significant number of patients, once they're in remission and they're feeling well, don't want to take medications long-term. That can be a mistake," says Raymond Cross, MD, associate professor of medicine and director of the Inflammatory Bowel Disease Program at the University of Maryland School of Medicine.
Going off your medication can lead to flares -- and then to complications, Cross says. Your intestines can get narrowed (strictures), like Noyes experienced. Or you can develop abnormal connections, called fistulas, between different parts of the intestines or other organs. Or tears, called perforations.
"What I try to tell patients when they come back in feeling well is, 'Listen, this is a perfect outcome. Why would you want to mess with success by stopping your medicines?'" says Cross.
Your food choices can have a big impact on how well you feel. There isn't any defined Crohn's eating plan, so designing your diet is a matter of trial and error. It starts with cutting out foods that tend to aggravate your symptoms, Cross says. "It's common sense. If something bothers them, they should avoid it."
Tracking what you eat and how each type of food affects you can help you home in on the diet that works best for you. By keeping a food journal, Noyes discovered that dairy and fiber irritated his symptoms. Today he limits dairy and high-fiber foods and eats a lot of nutrient-dense foods, like vegetable juices. He says his new diet has given him more energy and has helped him feel better overall.
Another reason to eat well is that Crohn's can make it harder for your body to absorb the nutrients it needs. If you're not getting enough vitamins or minerals from your diet alone, your doctor might recommend that you take supplements to replenish what you're missing.
You should be seeing a lot of your gastroenterologist. Going to all of your scheduled appointments will keep your treatment on track and let your doctor make changes to your medication, if needed.
"Some of the medications we use, such as immunosuppressants and biologic drugs, require monitoring in person. If you're not coming to the doctor as suggested, you could have side effects that are percolating," says Cross.
Because of his touring schedule, Noyes has two doctors: one on the East Coast and one on the West Coast. "I try to see them as much as possible," he says.
How often you see your own doctor depends on your condition. When you're feeling well, you might be able to get away with seeing the doctor just once a year, Korzenik says. During a flare, you could be making office visits as often as once a week.
If you smoke, one of the best things you can do for your Crohn's disease -- and your health in general -- is to kick the habit. Not only does smoking increase the chance of developing Crohn's in the first place, but the more you smoke, the greater your risk for flares.
An added bonus of quitting is that you'll lower your odds of getting cancer, heart disease, and the dozens of other dangerous conditions that are linked to smoking.
Having a disease like Crohn's can be extremely isolating. "It's really easy to feel alone in your battle and in your struggle with it," Noyes says.
"I think it's important for people to understand that they're not alone, there are other people who have these diseases," Korzenik says.
One of the best ways to relieve some of the seclusion is to take part in a Crohn's disease support group, where you can share experiences with people who've gone through the exact same challenges. To learn about support groups in your area, contact the Crohn's and Colitis Foundation of America.
Taking medication and redesigning his diet have helped Noyes get a good handle on his Crohn's disease. He's been flare-free since his 2007 surgery, which has allowed him to focus on other things -- like touring and recording a second album with his new band, Honor Society.
Having lived with Crohn's for several years, Noyes has learned a lot, including that laughter really is the best medicine. He says humor has gotten him through some of the lowest points in his disease.
"When I was really going through a tough stretch with the Crohn's right before my surgery, I was going to the emergency room on probably a weekly basis. My mom would take me to the emergency room and we would joke that it was 'date night,'" Noyes remembers. "If you can't laugh at the situation, it can become overwhelming."
SOURCES:Joshua Korzenik, MD, director of the Crohn's and Ulcerative Colitis Center at Massachusetts General Hospital.Raymond Cross, MD, associate professor of medicine; director, inflammatory bowel disease program, University of Maryland School of Medicine.Cosnes J. Alimentary Pharmacology & Therapeutics. November 1999; vol 13: pp 1403-1411.
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