Ulcerative colitis survey unmasks challenges for patients beyond devastating symptoms

Patients speak out regarding impact on intimacy, relationships and careers

Results released today from the Voices of UC survey of 1,000 ulcerative colitis (UC) patients underscore the extensive burden of the disease. UC is a debilitating chronic disease affecting more than 500,000 Americans, for whom there is no medical cure. While UC affects more people in the United States than multiple sclerosis or cystic fibrosis, general awareness of the disease is disproportionately lower.

Characterized by inflammation and ulceration of the innermost lining of the colon, UC symptoms can often include unwanted weight loss, severe – sometimes uncontrollable – bloody diarrhea, fatigue and frequent abdominal pain. For some patients, symptoms may lead to surgical removal of the colon or to secondary complications such as colorectal cancer. Moreover, according to those surveyed, 40 percent of UC patients experience incapacitating symptoms at least 180 days per year and have spent an average of 22 days in the hospital over the past five years. Nevertheless, nearly half of those people surveyed believe the seriousness of UC and its impact on their lives is underestimated and misunderstood by friends, family members and employers.

“The severity of symptoms, some of which may require hospitalization or surgery, the stress of financial and occupational concerns, as well as strained social and family relationships highlight the debilitating nature of this disease,” said Mark Goldman, Chairperson of the Board, Crohn’s & Colitis Foundation of America (CCFA). “The effects of UC are indeed far-reaching.”

The impact of UC on patients’ lives, including work, family and social activities, is extensive. Respondents indicated that in the workplace, UC limited their ability to plan their work schedule, and almost 28 percent reported that they avoided taking a job or work promotion due to UC-related symptoms. Furthermore, more than 40 percent of men and women surveyed avoided intimate situations with a spouse or partner because of their disease and associated symptoms, while nearly 25 percent reported trouble maintaining a relationship with a spouse or partner. Beyond personal relationships, family relationships may also be affected by UC, as nearly 70 percent of respondents reported that the disease impacted relationships with their children. The Voices of UC survey was conducted by Manhattan Research on behalf of CCFA and sponsored by Centocor, Inc.

“It is important that our efforts focus on recognition and diagnosis to ease the burden that UC creates in patients’ lives,” said Gary R. Lichtenstein, MD, professor of Medicine, University of Pennsylvania School of Medicine and director of the Inflammatory Bowel Disease Program at the Hospital of the University of Pennsylvania. “Moreover, we must continue to focus our research on effective treatments to help successfully manage this disease by reducing the frequency of symptom flare-ups, lessening corticosteroid use and decreasing the need for surgery.”