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Patients Can Take Charge of Ulcerative Colitis

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"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."

However, there are drugs that fight the inflammation of colitis just as steroids do and are "very good alternatives" to steroids, says Plevy. "They are very safe and effective over the long term." But they aren't used enough, he says, and still need closer monitoring, even just over the phone.

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