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Study aims to crack Crohn's disease


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POSTED: Wednesday, January 28, 2009

Crohn's disease struck R. Patrick McPherson while playing basketball at age 14 in summer leagues in Iowa.

               

     

 

SUPPORT GROUP FOR CROHN'S AND COLITIS

        A Crohn's and Colitis support group meets the second Monday of the month at Kaiser Permanente's Honolulu clinic, conference room 2E. Call coordinator Anita Johnson at 623-9303 for more information.
       

       

“;All of a sudden I got violently ill—throwing up and diarrhea,”; the 44-year-old Honolulu attorney said in an interview. “;I had to call time out and run off the court to go to the locker room. ... I was done for the night. It was a pretty awful experience.”;

About half a million Americans are affected by Crohn's disease, a chronic inflammatory bowel disease that has no known cause or cure, said Dr. Amy Brown, University of Hawaii associate professor of medicine. The number of Hawaii people who suffer from the disease isn't known, she said.

  Symptoms commonly include diarrhea, abdominal pain, malnutrition, loss of fat and muscle tissue. Fatigue, loss of appetite, weight loss and rectal bleeding also may occur.

“;The gastrointestinal tract is gravely affected by diet,”; said Brown, in the Department of Complementary and Alternative Medicine. However, no diet is prescribed for Crohn's disease patients because little research has been done in that area, she said.

She hopes to fill the void with a dietary study sponsored by a $109,423 Broad Foundation grant to the John A. Burns School of Medicine. She is seeking 60 participants, 18 to 75 years old, with mild to moderate Crohn's disease.

She is asking Oahu gastroenterologists to help recruit volunteers and possibly join the research team. The study “;could benefit the global Crohn's disease community,”; she said.

Participants will be placed either on a placebo or treatment diet, she said. Data from more than 1,000 articles relating dietary substances to the disease were combined into a balanced “;Crohn's Disease Diet”; for the clinical trial.

It's a matter of rearranging foods patients already eat based on some research indicating “;it might be helpful to avoid certain items in the diet or include others,”; Brown said.

Patients will be reimbursed for time and travel with a $100 gift certificate. Call 692-0907 for more information about the Crohn's disease diet study.

  McPherson, of Kailua, decided to do extensive research on Crohn's because it wasn't well studied when he was hit with it. He wasn't diagnosed until age 31 after moving from Pennsylvania to Hawaii.

He learned he can't eat a Big Mac and fries at McDonald's or he's “;gonna be in pain. Fast food, greasy food, gravy”; and anything with heavy fat content is out, he said. “;When I have an attack, I can't eat for a day or two.”;

McPherson often speaks to medical students, telling them the disease “;sucks. It's awful. It's terrible. But it ain't terminal, usually, and you can live with it. I'm lucky. My symptoms now are not so bad.”;

Some patients must have surgery, he said.

He said he had other flare-ups after the first episode, sometimes a year apart, and doctors always told him: “;It's a virus, maybe something you ate, something bad. Blah, blah, blah.”;

His next violent bout with the disease kept him from his graduation ceremony at Bloomsburg University in Pennsylvania. “;I was so sick, I couldn't stand up. The worst part of that, my parents accused me of being out partying all night, and I wasn't.”;

His parents made him go out to dinner that night, he said, “;and I was dying, so sick, and I had to paint a smile on my face.”;

  After coming to Hawaii, he said he had a flare-up that “;wouldn't go away”; and he lost 31 pounds in a week. “;I went from size 38 waist to size 31 in five days.”;

He said the next few years were “;pretty tough”; but the disease is under fair control with a medication regimen requiring about six different prescriptions. He takes 14 pills at breakfast and five at night. Some have side effects, such as causing bumps on the skin, he said.

He still has joint pain and other symptoms but “;nothing real major,”; he said. Diarrhea is the most miserable symptom, like a stomach virus, with pain and sometimes nausea, he said.

  Some theories suggest abnormal functioning of the immune system might cause the disease, according to the National Institutes of Health. It also may have a genetic link, Brown said.

McPherson said his grandmother and mother had gastrointestinal problems, and his 12-year-old cousin was diagnosed recently with Crohn's disease.

The family “;had no idea what was going on”; with his illness or the others, he said. “;We were very frustrated with the medical community because they brushed you off, especially when you're young.”;

McPherson's practice, involving such prominent drunken-driving cases as that of “;Lost”; TV star Daniel Dae Kim in 2007, keeps him running.

“;I'm on the go when I get up in the morning, then crash really hard at night,”; he said. “;Everybody's got a cross to bear. I've got mine. ... I can't let it get me down.”;