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Patients Can Take Charge of Ulcerative Colitis

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They also found that the participants in the study liked self-management better; "only two wanted to go back to the old system," he says.

"I think doctors need to let go of the reins on patients, give them more opportunity to take on responsibility," he says. "It's worked with asthma and diabetes. It applies to almost every chronic disease: stable angina, heart failure, Parkinson's disease, epilepsy, arthritis. Instead of patients being dependent on their doctor's every word to be able to do anything, they actually can take control of their lives."

Robinson's study points to some differences between healthcare practices in the U.K. and the U.S., says Scott Plevy, MD, co-director of the Inflammatory Bowel Disease Center at the University of Pittsburgh Medical Center.

"In this country, if a doctor in a gastroenterology private practice gets to know their inflammatory bowel disease patients as they should, and establish a long-term relationship, much of the acute management of these flare-ups is done by phone," he tells WebMD. "So the care is not really patient-driven, but it does not involve this kind of delay in treatment."

"I'm not going to make them wait weeks to come in," Plevy says.

Plevy was more concerned that Robinson's patients were self-treating with steroids. "This is a dangerous study if taken at face value," he tells WebMD.

"In my experience, patients who are self-medicating leave themselves on steroids continually," he says. "It may even be at a low dose. They may feel better, but they are slowly doing more damage to themselves and particularly their bones."

The goal for ulcerative colitis "has to be to get patients feeling better and off steroids to avoid the progression to osteoporosis," Plevy says. "My prediction is the average steroid exposure in the self-management group would be much higher than in the control group.

"This is absolutely outrageous," he tells WebMD.

Self-management of diabetes is different, he says. "Insulin is necessary. The patient will know if they're having too much or not enough insulin based on their symptoms. The problem with steroids is that patients feel better, but are doing themselves more damage over the long term."

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