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New York Times-Speaking Up About an Uncomfortable Condition
Bowels, especially those that don’t function properly, are not a popular topic of conversation. Most of the 1.4 million Americans with inflammatory bowel disease — Crohn’s disease or ulcerative colitis — suffer in silence.
But scientists are making exciting progress in understanding the causes of these conditions and in developing more effective therapies. And affected individuals have begun to speak up to let others know that they are not alone.
Abby Searfoss, 21, who just graduated from the University of Connecticut, shared her story not in a support group, but online. She was a high school senior in Ridgefield, Conn., when she became ill. After she researched her symptoms on the Internet, she realized that, like her father, she had developed Crohn’s disease.
Her father had been very ill, losing 40 pounds, spending weeks in the hospital and undergoing surgery. Soon after Ms. Searfoss’s own diagnosis, her two younger sisters learned that they, too, had the condition.
In Crohn’s disease, the immune system attacks cells in the digestive tract, most often the end of the small intestine and first part of the colon, or large intestine. Sufferers may experience bouts of abdominal pain, cramps and diarrhea, often accompanied by poor appetite, fatigue and anxiety.
“You don’t go anywhere without checking where the bathroom is and how many stalls it has,” said Dr. R. Balfour Sartor, a gastroenterologist at the University of North Carolina School of Medicine and a patient himself. “The fear of incontinence is huge.”