Living with Crohn's Disease

For years she was treated for the wrong disease; a radical therapy put her on the right track

Simone Leo, 28, Massapequa Park, N.Y.

Simone Leo has had digestive problems for as long as she can remember. “When I was six months old, I had a reaction to milk that put me in intensive care, so I avoided dairy products throughout my childhood,” she says. “Salads were always hard for me to digest, too, and I remember having a lot of gas and cramping growing up.”

Even so, Leo was totally unprepared when, at 19 and a sophomore in college, she developed such debilitating pain, cramping and diarrhea that she had to run to the bathroom up to 15 times a day. Her doctor diagnosed her with ulcerative colitis, a disease in which ulcers develop on the lining of the large intestine. He put her on Asacol (mesalamine, an anti-inflammatory medication) and prednisone (a steroid), plus a very bland diet, but the regimen did not alleviate her symptoms. “By my junior year I had to move back home,” she says. “I was down to 95 pounds, in pain and tired all the time, and towards the end of that year I developed such severe bleeding I had to spend five days in the hospital to receive intravenous medications. I even had to postpone my final exams.”

Despite her illness, Leo finished college and started her career as a social worker. Her symptoms persisted. For six years, she tried a variety of diets and drug therapies, including corticosteroids, immune system-suppressing drugs and even a biologic medication. When her illness took a dramatic downturn -- she developed anal fissures (cracks in the skin) and sores in her mouth and elsewhere on her body -- Leo switched doctors. Her new physician recommended surgery to correct the fissures, after which her symptoms only increased. Finally she elected to have her large intestine surgically removed in a procedure called a subtotal colectomy ileostomy. (The other choice was to try an extremely toxic drug.)

Tough as it sounds, the surgery was enlightening in more ways than one. “Afterwards, I was pain-free for the first time in six years,” Leo says. “I didn’t mind having the colostomy bags because I felt such relief.” Just as important: The biopsy of Leo’s large intestine revealed that she didn’t have ulcerative colitis, but instead had been suffering from Crohn’s disease, an autoimmune disease that causes inflammation of the digestive tract. The new diagnosis meant that Leo was a candidate for the drug adalimumab (Humira), a biologic medication that had just been approved for Crohn’s disease. Once Leo was on the new drug, her fissures and sores cleared up, and six months after her ileostomy, she was able to undergo an ileo-sigmoid-rectal anastamosis -- surgery to connect her small intestine to the sigmoid, a small part of her large intestine that remained and that was connected to her rectum. No more bags. Her digestive system was working.

Today, Leo still takes adalimumab, along with a small weekly dose of methotrexate, an anticancer medication that has been shown to relieve Crohn’s disease as well. In addition, she maintains the healthy lifestyle habits that brought her comfort during her most pain-filled days, including eating a careful diet (no dairy products or raw fruits and vegetables), practicing stress-reducing therapy techniques and doing yoga daily. She’s feeling so much better that she just signed up to train for a half marathon to raise money for Crohn’s research through the Team Challenge program of the Crohn’s and Colitis Foundation of America (CCFA). “When you’re in so much pain for so long, you don’t think you’re going to get better, and so it feels great to be in this position,” says Leo. “I feel the best I’ve ever felt.” Leo never turns down a request to talk about Crohn’s disease with people who are newly diagnosed. “Crohn’s is an unpredictable disease. It can make you feel out of control and helpless, which can be very depressing,” she says. “You have to trust in your doctors and yourself; you have to educate yourself and talk to other people. Initially, it’s very hard to accept that you have this disease. I saw a therapist who helped me with that part, and I learned that it’s vital to stay positive and adjust your life to manage the condition. Soon it becomes second nature and you realize that Crohn’s disease doesn’t have to take over your life.”

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