For 18 years, I have lived with ulcerative colitis, an inflammatory bowel disease (IBD) that often runs in Jewish families. The symptoms—a chronic sense of urgency, bloody diarrhea, fever, dehydration—are not constant, but randomly come and go. During the many years when I endured severe flare-ups, I reluctantly considered a nearby hospital my second home. Since the age of 17 when I first developed the disease, I would sometimes stop by the emergency room for a short stint to subdue flare-up symptoms quickly with intravenous steroids. But usually I would spend more than a week in the hospital while doctors tried to induce remission of my symptoms.
IBD has been categorized as “familial,” which means there is no guarantee that I’ll pass it on to the next generation. According to the Crohn’s and Colitis Foundation of America (CCFA), one million Americans have IBD, equally divided between two forms—Crohn’s, a disease that afflicts the digestive tract anywhere from the mouth to the anus, and colitis, which causes inflammation in the large bowel. Doctors have known for 30 years of the prevalence of inflammatory bowel disease in the Jewish population, and particularly in Ashkenazi Jews. According to Dr. David Rubin, a gastroenterologist at the University of Chicago Hospital, the incidence among Ashkenazi Jews is five times higher than that of the non-Jewish Caucasian population. Researchers have recently detected at least five genes associated with Crohn’s, said Rubin, who hopes more genetic studies will be carried out.
Although I’ve had colitis for half my life, I have managed to avoid surgery. Medications have controlled my flare-ups. But I know many others, especially those with Crohn’s, who have not been so fortunate. Miranda Gold, for one, a social worker in New York City who has undergone four surgeries.
“I think I’m a medical miracle. I have about a foot of intestine left,” she said. Surgeons have cut a total of more than 20 feet from Gold’s small intestine over 15 years. Each operation attempts to remove inflamed sections, but at the reconnection point inflammation often recurs, therefore necessitating further surgeries.
Miranda and I have both been fortunate to develop close relationships with people who understand our disease. I recently married a man to whom I disclosed and described my symptoms early in our relationship. He’s been sensitive to my potentially embarrassing moments. While we haven’t had to make trips to the hospital together, I have had minor flare-ups that have necessitated his pulling the car over fast, so that I could get to a rest room in a hurry. Crohn’s is a real test of any deep relationship. Arthur Freeman, an assistant social worker and friend of Miranda’s since childhood has learned a lot about Crohn’s disease through her. Searching out a bathroom in every location in advance becomes routine, he said. Worrying about not finding the bathroom on time or leaving it with unpleasant smells creates a constant sense of embarrassment for many people with this disease.
“To use the bathroom once a day is one thing,” Arthur said, “but to have to use it 28 times a day is another. It just sets you up for shame, I think at the deepest level. Humans do not want to smell bad. To have a disease that has to do with elimination is categorically different than having, say, a respiratory disease where there’s no shame.”