The Emotional Aspect of Inflammatory Bowel Disease
By: Dr. Charles Barish
Inflammatory bowel disease, known also as IBD, encompasses both Crohn’s Disease and Ulcerative Colitis. These two diseases are potentially devastating because they negatively impact both the physical and mental health of our patients. Upwards of a million people in the US are plagued with one of these diseases. The onset can be gradual, and the symptoms are often misdiagnosed. IBD tends to be a chronic, debilitating disease that follows a course of symptom flare-ups alternating with periods of remission. The remissions can last anywhere from a few days to a few months, to a few years. The spectrum of disease activity ranges from mild symptoms to moderate or severe. Hospitalization is sometimes required and many patients have need of surgery.
Many theories have been entertained as to the cause for IBD, some of which include intestinal infection, environmental factors, and abnormal immune responses within the body. Most researchers also agree that genetics plays a significant role. Family members of patients with IBD have a 10 times higher risked of developing the disease themselves, and sibling risk may be as high as 30 times elevated. Thousands of children and young adults suffer from these diseases. In our younger patients, growth and development may be adversely affected. The usual age of onset is between 15 and 35; however, 10% of patients are diagnosed under the age of 18. A second peak of onset seems to occur in patients over the age of 50.
The symptoms of IBD are due to inflammation in one or more sections of the intestines. This inflammation in the GI tract can result in abdominal pain, cramping, urgency for bowel movements, diarrhea, bleeding, anemia, infections and failure to thrive. Because digestion is often impaired, malnutrition and weight loss can result. Certain foods in some individuals can aggravate the symptoms. We can also see associated disorders separate from the GI tract, such as problems with the liver, joints, eyes, and skin.
Sufferers of IBD often experience difficulty coping emotionally. It is this component of the disease that is frequently disregarded. The emotional aspect is usually related to physical distress and the unpredictability of the disease. In IBD, virtually no part a victim’s life may remain untouched. To make matters worse, there may be a whole host of new problems resulting from side effects of the medications taken for management of the disease.
Victims of ulcerative colitis and Crohn’s Disease are sometimes unfairly labeled with psychiatric disorders such as depression, anxiety, or an inability to handle stress. Such emotional difficulties do occur, but rather than a cause for their affliction, they are a result of the disease or its treatment. Work is often adversely affected and patients may be at risk for losing their jobs. Their willingness to participate in social activities is often diminished. Ultimately, their quality of life, a determining factor in happiness and contentment, suffers immensely.
There is sometimes guilt associated with the misconception that patients should be better able to deal with their symptoms. This especially occurs on the part of family members when they finally understand that their loved one’s complaints cannot be resolved simply by dealing with life stress or emotions. As patients and their families better understand and learn to cope with these diseases, we observe the emotions of sadness, frustration, and anger. Treatment success and a better understanding of the disease will often promote encouragement, determination and hope.
My own personal practice has been heavily weighted towards inflammatory bowel disease. Treating this disorder over the years has satisfied my desire to help patients while enabling a goal of remaining current with research and new therapies. The connection between doctor and patient in IBD is most important, perhaps more important than it is in many other diseases. The doctor’s role as a concerned physician in helping patients deal with their predicament is critical. When patients feel good, our efforts and accomplishments together have been worthwhile. When they are not doing well, the physician’s involvement must be amplified as we work harder together to determine what to do next. By helping our patients and their families through the bad times, we as physicians are rewarded the privilege of sharing in their joy of the good times.
During the latter half of the 20th century, and now 16 years into the 21st century, we have seen amazing and exciting growth in the diagnosis and treatment of inflammatory bowel disease. Many patients who suffer from IBD now take a more active role in confronting their disease by attending seminars and support groups, and by helping to raise more money for research. Research and development have resulted in new ways of treating IBD. Because of clinical studies in which patients participate, we now have in our armamentarium the anti-TNF drugs and other biologic durgs. Such treatments are currently used to treat IBD and this has resulted in prolonged remissions, less need for surgery and marked improvements in quality of life. Unfortunately, we have not yet arrived at the cure, but we have found ways to improve tremendously the lives of patients who suffer from IBD. There remains hope for a cure, however, with the persistent research efforts of great minds and with ongoing clinical studies.