People who have inflammatory bowel disease (IBD) know well its physical effects. But physical symptoms are not the only effects of IBD. IBD sufferers’ entire lives are affected, so they often end up seeing many different doctors. A new model of medical care is being used to help people with IBD cope with all of its effects.
Crohn’s disease and ulcerative colitis are the main inflammatory bowel diseases that are caused by an abnormal response by the body’s immune system against the gastrointestinal tract. Crohn’s disease is an inflammation of the lining of the digestive tract. It can cause severe diarrhea, stomach pain and cramping, bleeding, weight loss and malnutrition. Ulcerative colitis is a chronic disease of the colon. The lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucus. It causes stomach pain, diarrhea, bleeding, weight loss and fatigue. No one knows exactly what causes either disease. Complications from both diseases can lead to hospitalization and surgery. Medications can be aggressive and may have side effects but often help to put people in remission. IBD usually strikes people between the ages of 15-35.
Miguel D. Regueiro, MD, professor of medicine and of clinical and translational science, University of Pittsburgh School of Medicine, says that IBD also carries a stigma.
“People generally don’t like talking about their bowels,” he says. “People often live with IBD silently and don’t talk to family or friends about it. It can make them nervous about being out in public. The stigma can cause symptoms of depression and anxiety.”
“In the IBD medical home model, the gastroenterologist coordinates the whole-person care,” says Dr. Regueiro. “At the beginning of a visit, we’ll ask patients a set of questions that include what their three top problems are and what they want to get out of the visit. For example, a patient tells us she had a hard time paying for the bus to come to clinic. She has a lot of stress and bone pain. The gastroenterologist sees her for the IBD and then helps her tackle her other top concerns. The patient meets with the social worker or psychiatrist on our team for the stress. She also sees the dietitian, the surgeon and a pain specialist—all in one visit. After that, rather than bring her back for multiple separate visits, we’re now using telemedicine [checking in using technology] and remote monitoring so that she doesn’t need to come into clinic as often.”
In addition to the medical home helping patients with IBD, Dr. Regueiro says that more advances in research are also helping people cope with the disease.
“Nobody wants these diseases,” he says, “but compared to the past, we know so much more. Research has given us knowledge in the areas of genetics, immunology and the microbiome [the organisms that live in the body and affect how it operates]. IBD used to be primarily a disease people of northern European descent would get. In the last 20 years, we’re seeing it more and more in people from all races and ethnicities. Research is now focusing on how IBD affects different populations differently and how to treat these differences. But we probably understand more about these diseases and their treatments than we ever have. This is a time of great hope for IBD.”
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