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The Informed Parent

Crohn’s Disease

by Peter W. Welty, M.D., F.A.A.P.
Published on Jun. 18, 2001

Teenagers are notorious in dismissing serious illnesses or incapacitating health issues that would affect their normal life. A point in fact was 17-year-old Charlie who was recently diagnosed with Crohn’s disease. Upon being informed of his illness Charlie soon grew angry, refusing to take the medication. This attitude was followed by denial. And of course the disease grew worse.

What exactly is Crohn’s disease? It is a chronic inflammatory disease of the intestine. It usually causes ulcerations in the small and large intestine, but can affect any part of the intestine, from the mouth to the anus. Crohn’s tends to run in families, and it generally first affects teens and young adults. This is a chronic, recurring disease with periods of flare-ups and remissions.

The cause of Crohn’s is unknown, and the topic is under research at this time. It is believed that Crohn’s may be related to abnormalities in the body’s immune system to its bowel contents. The immune system of those with the disease tends to react to a variety of substances in the intestine, and causes inflammation and ulcerations. This abnormally active immunity is felt to be inherited. Certain chromosomal markers have been found in those with the disease.

Symptoms of those with Crohn’s include abdominal pain and cramping, diarrhea, and sometimes bloody and rectal bleeding. Often there is a fever. The treatment for the disease includes medicines such as salicylate preparations, corticosteroids, antibiotics, and medications to suppress body immunity. Which treatment is used depends on the severity of the disease. Some with advances Crohn’s may need surgery. Dietary changes may need to be made, including a low fiber diet, and vitamin supplementation. Occasionally, a liquid or a TPN diet is necessary.

Charlie has been diagnosed with a serious chronic illness. Unfortunately it cannot be ignored. It will require his constant vigilance and care. Teenagers have trouble accepting and managing any chronic illness, whether it is Crohn’s disease, diabetes or asthma. It is difficult enough to traverse adolescence without doing so while concerned about a chronic disease. Many teens do not want to accept that they have a serious illness. Therefore, they will not take their medications in an effort to hope that it will go away. They become angry at having to restrict their diet. They may become frustrated that life is not worth living if it is so difficult. Many teens with colostomy bags have trouble managing issues such as dating, wearing tight clothing, going to the beach, etc.

It is important to try to let Charlie have as much control over his disease as possible. He should be the primary contact with his doctor, and should be able to freely voice his concerns, side effects of his medications, and his symptoms. It might be helpful to set up a specific behavioral chart, where he obtains a reward or privilege for taking all of his medicine, or sticking to his diet.

He also needs an opportunity to be able to talk about his feelings and concerns with others. Moms may be good as a shoulder to cry on, but Charlie would also greatly benefit from a support group. There are great support groups for teens with Crohn’s disease in large medical centers. Learning how to manage Crohn’s as a teen is best learned from another sympathetic teen with the same disorder.

Additionally, there are many wonderful web sites available for those with the disease to provide information as well as on-line support.

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