“On A Date, I Always Wonder Where the Bathroom Is?”

How would you feel, at 18 years of age, if suddenly diagnosed with Crohn’s Disease (CD)? It would be devastating news. Unlike other well-known diseases you would know nothing about this trouble, and even the name sounds ominous. Crohn’s Disease is not a household word and, in spite of its importance, receives few research dollars. But you would not be alone.

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Crohn’s Disease affects 600,000 people in North America. Normally it strikes those between 20 to 35 years of age, with another peak in the 50s, but no age is immune to this disorder. Smokers are three times more likely to develop it. It shows no sex bias as it affects both sexes equally. In about 20 percent of cases a blood relative has some form of inflammatory bowel disease. Those of Jewish heritage show an increased risk. African Americans are less likely to develop this problem. Crohn’s patients suffer from recurrent episodes of abdominal pain, bloody diarrhea, fever and weight loss. Geographically, any part of the gastrointestinal tract from mouth to anus can be affected. But most commonly it involves the lower part of the small bowel, called the ileum. There are several theories about what causes Crohn’s Disease. Some researchers believe CD is an auto-immune disease in which the body’s defenses become confused and begin attacking its own cells. But whatever the reason, the bowel wall becomes repeatedly inflamed with no rhyme or reason for when these attacks occur. Initially, it may be difficult to know whether the patient suffers from Crohn’s Disease or ulcerative colitis, which primarily affects the large bowel. But blood tests, x-ray and colonoscopy examinations eventually determine the diagnosis. The most common complication is blockage of the intestine. Repeated episodes of inflammation cause swelling, scar tissue and narrowing of the bowel. In some cases the inflammatory response may be so intense that perforation of the intestine occurs and tunnels develop between the bowel, vagina, bladder or skin. And fissures or small tears may occur at the anal area. So a diagnosis of Crohn’s Disease, whether at 18 years of age or older, causes a major readjustment in one’s life. As one young girl said to me “If I’m out on a date I’m often thinking where is the bathroom if I need one, and how do I tell him I have this problem?” Others say these repeated attacks place a strain on relationships, that the uncertainty of recurrence makes it hard to plan ahead. Patients with Crohn’s Disease must get to know their disease and start a food diary to ascertain what foods cause trouble. But at the same time they must be careful not to develop a food phobia, as food does not cause CD nor cure it. And above all else they must not let this disease overwhelm their lives. Some patients discover that if they consume less food the chance of bowel problems is decreased. But this can be dangerous as it can lead over time to malnutrition and that’s the last thing a patient with Crohn’s Disease needs. For instance, intestinal bleeding can lead to iron deficiency anemia. It’s also important to make sure that patients with CD have sufficient amounts of vitamin B12. Since vitamin B12 is absorbed at the end of the small bowel where CD often strikes, this vitamin may be lacking. And since many patients with CD cannot tolerate lactose it’s important they receive adequate amounts of calcium and vitamin D. Treatment depends on the severity of the disease. Cortisone and drugs to suppress the immune system may limit the inflammatory response. But sometimes multiple surgeries are needed to remove inflamed portions of intestine. Researchers are trying many different approaches to curing this disease. But talking to them revealed one statement that stood out. They are terribly short of funds. It may be that bowel problems are embarrassing compared to heart and other diseases. Society has always been sensitive about talking about bathroom habits. No doubt this phobia results in a lack of funding.