| Mysterious Crohn's Disease can strike at any age By Leslie Boyd Asheville Citizen Times POSTED: March 15, 2002 3:48 p.m. WEAVERVILLE - It's just not something that's talked about in polite company. That's probably why when Erika Franzi of Weaverville tells people her 10-month-old son, Giorgio, has Crohn's disease, she's often met with puzzled looks. Crohn's usually strikes people in their teens to age 30, but it can occur any time - President Dwight D. Eisenhower developed it in his 60s, and Giorgio Franzi developed it in early infancy. "When they told me it was Crohn's disease, I thought, `OK, he'll have diarrhea,'" says Franzi as Giorgio pulls himself to a standing position near her and smiles broadly. "Then I started reading up on it, and it's not so simple." Crohn's is classified as an inflammatory bowel disease, although it can strike anywhere in the digestive system. It most commonly occurs in the small intestine and colon, causing cramps and diarrhea, and sometimes intestinal bleeding. It can lead to poor absorption of nutrients, weight loss and even intestinal blockages from buildup of scar tissue. The disease also can cause sores called fistulas that can tunnel through tissue to other organs or to the outside of the body. Fistulas most often affect the area around the anus and can become infected. Other complications include arthritis, skin problems, kidney stones and gallstones. Giorgio started having bloody diarrhea at about 3 months old, but he didn't seem ill otherwise, says Franzi. He seemed happy and contented. But the bloody diarrhea was abnormal, so doctors performed a flexible sigmoidoscopy, a test in which a small, lighted tube is inserted into the anus so doctors can see the lower portion of the bowel. Giorgio's test showed signs of inflammatory bowel disease, but doctors didn't believe it was Crohn's. At age 7 months, Giorgio was still passing blood, and he had become anemic. By now he was acting sick. His usually cheerful disposition was gone and he cried much of the time. Doctors performed another flexible sigmoidoscopy, and this time, there was no doubt. Giorgio had Crohn's disease. "It's so rare in infants, it's almost unheard of," says Giorgio's pediatric gastroenterologist, Dr. Charles Mitchell, who practices in Asheville. "In my 30 years of practice, this is the first infant I've treated for Crohn's." Giorgio was losing weight because his small intestine wasn't absorbing the nutrients he needed. He went from 17 pounds down to 15. He was placed on a special oil-based formula with nutrients broken down so he could absorb them, and he's gained back the weight. Giorgio's father, Craig, knows what it's like to have a chronic disease. He has had Type 1 diabetes (also known as juvenile diabetes) since he was 15. "I wish he didn't have to go through this," says Craig Franzi as he reaches over to toss his son a ball. Giorgio takes off crawling and giggling in pursuit. "If I have my way, they'll find a cure for Crohn's before they find one for diabetes." No one knows what causes Crohn's, although some suspect it may be an auto-immune disease in which the body responds to a virus or bacterial infection by causing constant inflammation in the intestine. The tendency to get Crohn's disease runs in some families - about 20 percent of Crohn's patients have a close relative who also has it or ulcerative colitis. No one on either side of Giorgio's family - including his 2-year-old sister, Grace - has Crohn's. About a million people have inflammatory bowel disease, and about half of them have Crohn's. The difference between Crohn's and ulcerative colitis is that colitis only affects the top layer of the lining in the large intestine; Crohn's affects all layers and occurs in both large and small intestines. Crohn's symptoms come and go. Patients can be symptom-free for weeks or months, and flare-ups can be helped with a number of medications. Corticosteroids help relieve inflammation, as do medications in a class of anti- inflammatory drugs called 5ASAs. Drugs that suppress the immune system also help by blocking the immune response that contributes to the inflammation. Giorgio takes the steroid prednisone, the immunosuppressant Imuran, the 5ASA mesalimine, plus several nutritional supplements. Another medication that shows promise is an anti tumor necrosis factor substance. Tumor necrosis factor (TNF) is a substance produced by the body's immune system, but in people with Crohn's disease, it may contribute to the inflammation. The drug infliximab (Remicade) removes TNF from the bloodstream before it reaches the small intestine. It doesn't work on everyone, says Mitchell, but when it does, it can help patients stay inflammation-free for weeks or months. Unfortunately, these drugs can have side effects, including nausea and diarrhea. Using steroids long-term can cause stunted growth and, like immunosuppressants, leave patients more susceptible to infection. Children with Crohn's usually have one or two flare-ups a year, says Mitchell. Although stress doesn't cause the illness, it can contribute to flare-ups, and the most common time of year is September, when kids return to school, he says. Many patients require surgery to open up blockages in the small intestine caused by scarring, or to repair perforations in the intestine. Sometimes, the affected area of intestine is cut out to relieve symptoms, but the disease usually returns near the site of surgery. Still, most people with Crohn's lead normal lives. Giorgio may always be small for his age, but he will go to school and grow up. By the time he's 20, there may be a cure, says Mitchell. "The truth is, we really don't know about the long-term," says Mitchell. "Some people do really well and never need surgery. We never know, though, who'll do really well and who won't." Giorgio's symptoms are under control now, but he could become ill again any time. No one knows when the symptoms might return, or how severe his illness will be in the long run. "People ask me how he's doing and I don't know what to say," says Erika Franzi. "We have to go day-by-day. He's in such good shape today, but he could flare up again tomorrow and wind up in the hospital being fed by a nasogastric tube. . Multiple surgeries are almost inevitable. We'll cross that bridge when we come to it, but I'm pretty sure we will come to it." Contact Boyd at 232-2922 or [email protected]. Resources Crohn's and Colitis Foundation of America 386 Park Ave. South, 17th Floor New York, N.Y. 10016 (800) 932-2423 Pediatric Crohn's and Colitis Association PO Box 188 Newton, Mass. 02468 (617) 489-5854 National Institute of Diabetes and Digestive and Kidney Diseases |
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| Giorgio made the paper! Here's the article from the Health section of the Asheville Citizen-Times. |