Health Committee

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Please visit: http://www.growingupibd.org for more information. This is a description of Inflammatory Bowel Disease. Following are stories by children with Crohn's Disease and Ulcerative Colitis. Statistically, Inflammatory bowel Disease (IBD) strikes in young adulthood. Approximately 2 million people are affected. The NIDDK statistics for 1987 state that incidence is 2 to 6 new cases per 100,000 people. Mortality is less than 1000 deaths today. Hospitalizations are 100,000-64% for Crohns Disease. There were 700,000 office visits, 119,000 on disability. More often than we think it strikes children and infants. An estimated 20,000 suffers are children. A child will generally have a more virulent form of IBD. There is no cure for this disease. IBD is a constant inflammation of the intestines. The small bowel, where absorption of nutrients takes place, is affected in Crohn's disease. It narrows and becomes inflamed causing intermittent blockages or urgent, constant diarrhea. CD can effect the entire digestive tract from the mouth to the rectum. Blockages are often surgically removed, and then the disease often spreads to the remaining healthy intestine. Fistulas can form which basically eat through the skin, or from the bowel to a neighboring organ. High fevers, malnutrition and intense pain accompany these symptoms. Hospitalizations are frequent, as are surgical procedures like resections, ileostomy, or colostomy when the disease affects the Rectum. Ulcerative Colitis can spread to affect the entire colon. The hallmarks are constant, urgent diarrhea, bleeding, and pain. The risk factors are a higher incidence of colon cancer and bilary cancers, Primary Sclerosing Cholangitis that leads to liver transplantation and Ankylosing Spondylitis in which the vertebra fuses together. The standard surgery is a Colectomy, or removal of the entire colon with an Ileostomy. Many of the children have had this surgery because of pre- cancerous changes, others because the disease becomes impossible to manage and the colon can no longer function. Absorption of nutrients becomes a problem. These diseases reduce quality of life. For adults it takes away careers. It forces people into disability and it renders them uninsurable or underinsured. For children it presents a unique set of problems because they are still growing. Sulfasalazine is generally the first course of treatment, then Corticosteroids. Prednisone can cause irreversible damage emotionally and physically. You will read about some of these effects in the profiles. Children develop eye problems, and teeth and bones do not develop normally. They develop connective tissue disorders. You will read about an 18-year-old with osteoporosis, and a 6-year-old in a back brace. Immunosuppressants are being used more frequently, and these have dangers of their own. Adults avoid them whenever possible. These kids have to live with this daily, for many years. Surgery is the final option and you will see that many of our kids have undergone surgery bravely. There is also intense fear and anxiety. You will see how surgery does not always cure and presents new sets of problems. Consider the 6-year-old with CD, unless the disease is halted, how many years can her colon survive surgeries? Inflammatory Bowel Disease is a condition that NEVER goes away. It may not kill you these days, but you will have many episodes where you may come close to death. People with this illness will, at times, find death preferable. Sadly, some of these kids have had these moments. These children receive protection in education under the IDEA (Individuals with Disabilities in Education Act), a law that is only as good as your school district. Their insurance benefits are used up by the time they hit adulthood or before. We have young adults with university degrees that jumped through hoops that the average college student never knew existed. While the disease saps your energy, side effects of medication alone can cause distinct learning problems. Some of these children have to be on a homebound education plan. While most young people choose a career, these kids have to settle if they even can work. They must settle or go on disability, or go with any employer that will insure them. We are asking for help to raise awareness of IBD. There is a clear need for more research into better medications, surgical procedures, and possibly a cure. Just knowing what causes this would be a great start. Please take a few minutes to read what the children have written about their lives. Anything you can do to raise awareness toward funding, can help to make their future a brighter one. A future that these kids are facing with great hope toward eradicating this disease.

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