What is Crohn's disease?

Crohn's disease (sometimes called ileitis or enteritis) causes inflammation throughout the digestive tract -- from the mouth to the anus -- deep into the lining of the affected organ. This can cause pain and can make the intestines empty frequently. The most common symptoms of Crohn's disease are abdominal pain and diarrhea. Rectal bleeding, weight loss, and fever may also occur. Bleeding may be serious and persistent, leading to anemia. Children with Crohn's disease may suffer delayed development and stunted growth.

Crohn's disease affects men and women equally and seems to run in some families. About 20 percent of people with Crohn's disease have a blood relative with some form of inflammatory bowel disease, most often a brother or sister and sometimes a parent or child. One of Jordan's brothers, David, has also been diagnosed with Crohn's disease. Jordan's case is among the worst 10 percent of all Crohn's cases, and is particularly severe for a child.

What causes Crohn's disease?

No theory about what causes Crohn's disease has yet been proven. The most popular theory is that the body's immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestine.

People with Crohn's disease tend to have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or result of the disease. Crohn's disease is not caused by emotional distress.

What are the complications of Crohn's disease?

The most common complication is blockage of the intestine. Blockage occurs because the disease tends to thicken the intestinal wall with swelling and scar tissue, narrowing the passage. Crohn's disease may also cause sores, or ulcers, that tunnel through the affected area into surrounding tissues. The tunnels, called fistulas, are a common complication and often become infected.

Nutritional complications are common in Crohn's disease. Deficiencies of proteins, calories, and vitamins are well documented in Crohn's disease. These deficiencies may be caused by inadequate dietary intake, intestinal loss of protein, or poor absorption of nutrients.

Other complications associated with Crohn's disease include arthritis, skin problems, inflammation in the eyes or mouth, kidney or gallstones, or other diseases of the liver and biliary system.

At some point since he was diagnosed with Crohn's disease in 2000, Jordan has suffered from each of these complications.

What is the treatment for Crohn's disease?

Treatment for Crohn's disease depends on the location and severity of disease, complications, and response to previous treatment. The goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like abdominal pain, diarrhea, and rectal bleeding. Treatment may include drugs, nutritional supplements, surgery, or a combination of these options. At this time, treatment can help control the disease, but there is no cure.

Some people have long periods of remission -- sometimes years --during which they are free of symptoms. However, the disease usually recurs at various times over a person's lifetime. This changing pattern of the disease means one cannot always tell when a treatment has helped. It is not possible to predict when a remission may occur or when symptoms will return.

Most people are first treated with drugs that may control symptoms but can also cause serious side effects, including greater susceptibility to infection. Doctors may also recommend nutritional supplements, especially for children like Jordan, whose growth has been slowed. Special high-calorie liquid formulas are sometimes used for this purpose. A small number of patients may need periods of feeding by deep vein. This can help patients who need extra nutrition temporarily, those whose intestines need to rest, or those whose intestines cannot absorb enough nutrition from food. Jordan was fed intravenously or through a tube (with no food by mouth) for almost all of March 2001 to December 2002. Jordan is able to eat food by mouth today due to a powerful regimen of steriods and immunosuppressants, with have other serious side effects.

Surgery to remove part of the intestine can help Crohn's disease, but cannot cure it. The inflammation tends to return next to the area of intestine that has been removed.

Since drug and surgical treatments have failed for Jordan, his only hope may be the stem cell transplant he received on June 2, 2005.

People with Crohn's disease may feel well and be free of symptoms for substantial spans of time when their disease is not active. Despite the need to take medication for long periods of time and occasional hospitalizations, most people with Crohn's disease are able to hold jobs, raise families, and function successfully at home and in society. Jordan's case is extremely severe and has significantly impacted his ability to lead a child's normal life.

Where can I get more information about Crohn's disease?

The information on this page was adapted from the National Institutes of Health. Additional information and resources about Crohn's disease are available from the Crohn's & Colitis Foundation of America and the Pediatric Crohn's & Colitis Association.