Patients Can Take Charge of Ulcerative Colitis

From the WebMD Archives

Sept. 24, 2001 -- For those with ulcerative colitis -- often called inflammatory bowel disease -- flare-ups mean nasty abdominal pain, diarrhea, even bleeding ... until you get back on your medication. But if getting the prescription means waiting to see your doctor, that delay in treatment makes the condition worse.

A new study shows that when you take charge of your own health -- when you tune into symptoms, have medication on hand, and know when to take it -- the crisis is averted. It's called "self-management," and it works, says Andrew Robinson, MRCPPhD, a consultant gastroenterologist at the University of Manchester in England

"Patients who manage themselves don't have to see the doctor as frequently -- one-third as often -- and because they get earlier treatment when relapses occur, they get them under control quicker," he tells WebMD.

His study appears in the Sept. 22 issue of the journal Lancet.

Robinson compares his concept to what's been happening for many years with diabetes and asthma treatment, where patients are taught about their disease and how to self-medicate. Many chronic diseases -- including Parkinson's disease and arthritis -- can also be managed this way, he says.

In the U.K. health care system, when patients have a flare-up, they may have to wait weeks to see a doctor just to get their medication. Robinson says that delay in treatment is avoided with self-management.

During his 18-month study, Robinson enrolled over 200 people with ulcerative colitis. Half followed conventional outpatient treatment. Half received training in self-management with a 15- to 30-minute consultation to help them recognize a flare-up; each patient and doctor then agreed on a mutually acceptable treatment.

Those in the self-management group had quicker treatment for relapses and made fewer visits to the doctor for "crisis" appointments. In fact, the self-management group had 88 clinic visits whereas the comparison group had 297 clinic visits. "A huge difference," Robinson tells WebMD.

However, the number of actual hospital admissions and surgeries were the same, and patients' quality of life was reported as similar in both groups.

The big difference was the number of doctor visits, Robinson says.

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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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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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