Ileostomy Quotes

Among frail, elderly patients, C. diff can be fatal in approximately 5-10%. Some patients with severe C. diff end up losing their colon and have a permanent bag on their side to catch bodily waste, via a procedure known as an ileostomy.

A True Story Let me tell you about Wendy. For more than ten years, Wendy struggled unsuccessfully with ulcerative colitis. A thirty-six-year-old grade school teacher and mother of three, she lived with constant cramping, diarrhea, and frequent bleeding, necessitating occasional blood transfusions. She endured several colonoscopies and required the use of three prescription medications to manage her disease, including the highly toxic methotrexate, a drug also used in cancer treatment and medical abortions. I met Wendy for an unrelated minor complaint of heart palpitations that proved to be benign, requiring no specific treatment. However, she told me that, because her ulcerative colitis was failing to respond to medications, her gastroenterologist advised colon removal with creation of an ileostomy. This is an artificial orifice for the small intestine (ileum) at the abdominal surface, the sort to which you affix a bag to catch the continually emptying stool. After hearing Wendy’s medical history, I urged her to try wheat elimination. “I really don’t know if it’s going to work,” I told her, “but since you’re facing colon removal and ileostomy, I think you should give it a try.” “But why?” she asked. “I’ve already been tested for celiac and my doctor said I don’t have it.” “Yes, I know. But you’ve got nothing to lose. Try it for four weeks. You’ll know if you’re responding.” Wendy was skeptical but agreed to try. She returned to my office three months later, no ileostomy bag in sight. “What happened?” I asked. “Well, first I lost thirty-eight pounds.” She ran her hand over her abdomen to show me. “And my ulcerative colitis is nearly gone. No more cramps or diarrhea. I’m off everything except my Asacol.” (Asacol is a derivative of aspirin often used to treat ulcerative colitis.) “I really feel great.” In the year since, Wendy has meticulously avoided wheat and gluten and has also eliminated the Asacol, with no return of symptoms. Cured. Yes, cured. No diarrhea, no bleeding, no cramps, no anemia, no more drugs, no ileostomy. So if Wendy’s colitis tested negative for celiac antibodies, but responded to—indeed, was cured by—wheat gluten elimination, what should we label it? Should we call it antibody-negative celiac disease? Antibody-negative wheat intolerance? There is great hazard in trying to pigeonhole conditions such as Wendy’s into something like celiac disease. It nearly caused her to lose her colon and suffer the lifelong health difficulties associated with colon removal, not to mention the embarrassment and inconvenience of wearing an ileostomy bag. There is not yet any neat name to fit conditions such as Wendy’s, despite its extraordinary response to the elimination of wheat gluten. Wendy’s experience highlights the many unknowns in this world of wheat sensitivities, many of which are as devastating as the cure is simple.