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Avi Michael absentmindedly plays with his lip piercing, his thin frame draped casually over his bed. His wall is covered with posters of Bob Dylan and Modest Mouse; two guitars are propped up on a stand next to his closet, another lies on the vacant bed across from his.
“I want to be a rock star,” said Michael, a 20-year-old history and film major at Northeastern University, and front man for the band, The Sex and Murder.
However, touring with his band would be difficult, Michael says. He suffers from Crohn’s disease, a chronic and often debilitating ailment that causes inflammation in the digestive system, primarily the large and small intestines. Symptoms include rapid weight loss, abdominal pain or cramping, and rectal bleeding.
Michael was diagnosed as a senior in high school at the age of 18.
“I was really sick for a while. It got to the point where I would get sick and throw up after everything I ate,” he said.
As a result, he lost a lot of weight; at 5’8”, Michael weighs only 128 pounds. The average weight for a male of his height is closer to 160 pounds.
Over 200,000 Americans suffer from Crohn’s, according to Dr. Richard Curtis, chief of gastroenterology at Newton-Wellesley Hospital. Though the disease does not target a specific age group, certain risk factors do exist. People who have a genetic predisposition to it are more likely to develop Crohn’s, said Dr. Curtis. For example, people who have a close relative with Crohn’s have a 20 percent chance of being diagnosed with it themselves. Crohn’s is more common in Jews than in non-Jews; it is most common in Ashkenazic Jews than any other group.
“Crohn’s is usually thought of as an old person’s disease,” said Michael. The harsh reality is that many Crohn’s sufferers are college-aged teens, many of whom were diagnosed as young children.
Caitlin*, a 16-year-old sophomore at the Boston Latin School, was diagnosed at the age of 11. Trying to complete her schoolwork while maintaining her health is often difficult, Caitlin said.
“When I feel good (almost all the time), Crohn’s doesn’t affect school at all,” she said in an e-mail. “It’s when I get so exhausted that I have to miss a day of school. I feel guilty missing school, and depending on the time of year, I get so much work the next day that I have to make up.
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Crohn’s patients almost always find that stress exacerbates the condition. For those adjusting to college life (away from their parents) and an increased workload, this is a difficult situation.
“The first month I was at college, coming to Northeastern … I was excited to be moving out of my dad’s basement to Boston,” said Michael. “The first month of school, I never left campus.” Michael said the stress caused him to have a flare-up.
“The cafeteria food didn’t help,” said Michael. “Freshmen are required to have a meal plan…looking back, I probably should have gotten a doctor’s note so I wouldn’t have to buy a meal plan. Whenever I went to the cafeteria, I would just eat sandwiches.”
As Crohn’s is a chronic illness (i.e., it has no cure), patients may elect to alter their diets to better suit their situations. Michael, for example, used to eat pizza almost every day. Now, he says, dairy products upset his digestive system so much that he has cut them out of his diet altogether. “Now I eat a lot of cereal with Lactaid,” he said.
Crohn’s can also be controlled through medication, although none of these medications seem to be a long-term solution because many of them can have serious side effects if taken for long periods of time.
The most common drug used for treating flare-ups is Prednisone, a steroid that combats inflammation. However, it is possible to become dependent on the drug, so doctors are very careful to wean their patients off of Prednisone very slowly. Other side effects include weight gain, liver damage, and an increased risk of osteoporosis due to brittle bones.
“I was put on Prednisone for six weeks,” said Michael. “I gained 26 pounds, I was eating all the time, but it was only a quick fix.”
Several new medications have been introduced into the market in recent years, one of them being Remicade. Remicade is an infusional drug, administered intravenously, that is used to treat both rheumatoid arthritis and Crohn’s. Michelle Cormier, a nurse who administers Remicade, said that the success rate for patients on Remicade is fairly high. But, like any medication, Remicade has its drawbacks. The Food and Drug Administration (FDA) recently released a report linking Remicade to an increased risk of lymphoma.
Some treatments can be a financial strain. For example, most Remicade patients are infused once every eight weeks. Each infusion can cost up to $5,000, depending on how much medication is administered (the dosage is based on the patient’s weight).
Most doctors use surgery only as a last resort. However, if all medications and alternative treatments fail, many patients may undergo surgery to alleviate symptoms. Kerri*, a 21-year-old senior communications major at Roger Williams University, has been a Crohn’s sufferer since the age of 10. She has had four surgeries to try to repair the damage to her intestines. Because there is no cure for Crohn’s, it is possible to have a relapse, even after having the infected parts of the bowels removed.
Along with being infused with a variety of drugs, Crohn’s patients also get used to being poked and prodded by doctors, especially when they are being diagnosed.
“The tests they do on you are horrible, the reason being they have to get into your intestines, and there are only two ways to do that…there are only two entrances,” said Michael. “They tried to do a colonoscopy on me when I was awake, and I freaked out.”
With all of its underlying problems, younger Crohn’s patients find that the area of their lives impacted most is their social lives.
“It’s not something I like to talk about often,” said Michael. “The only time I’ll bring it up is when my friends will complain about being sick. They’ll say, ‘Oh, my stomach hurts,’ and I tell them, ‘Well yeah, that’s what I have to deal with every day!’” said Michael.
“I sometimes feel lonely, because I feel that no one my age understands [Irritable Bowel Disease],” said Caitlin. “None of my friends have it. Most of them have never heard of it either.”
“It’s just icing on the cake,” said Michael. “A lot of times I won’t be able to go out when I want to because I’m sick. A lot of college kids can travel and go on road trips, but it would be hard for me to do something like that.”
Many are uneducated about Crohn’s; most have never heard of it at all.
“One of my ex-girlfriends, her parents didn’t want her with me because I was sick. They didn’t want her with me because they thought she would get attached to me and that I would die,” said Michael. “It’s not like it’s something you can catch…and usually it’s not fatal.”
The Internet has become a useful tool in helping those with Crohn’s communicate with others dealing with the same situation. Organizations such as the Crohn's and Colitis Foundation of America have Web sites where people can make accounts and donate money to the cause of finding a cure. The CCFA also holds fundraising events several times a year try to raise money for drug research..
The CCFA has a summer camp for kids with Irritable Bowel Diseases. Caitlin has attended the camp twice.
“Both times I went it, was a blast,” she said.
Web sites such as Google or Livejournal have groups anyone can join, then post on the message boards. Other users can respond to these posts. A lot of people form personal connections through the support groups.
Other online support groups include crohnszone.co.uk, which is based in the United Kingdom, but has members from countries all over the world, including the United States, Ireland, Canada, New Zealand, and Australia.
Though there is no cure in sight, Michael says he won’t let it get him down.
“It’s just something I have to deal with,” said Michael. “Obviously it sucks having to deal with something like this at my age, but what can you do? You just have to deal with it.”