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Caregivers

What is Crohn’s Disease?

Crohn’s disease (CD) is a type of inflammatory bowel disease (IBD), which is a term used to describe conditions that cause chronic inflammation of your gastrointestinal tract. In Crohn’s disease there is inflammation (redness, swelling, ulcers/sores) anywhere in the gastrointestinal system, though most likely in the lower part of the small intestine and large intestine.

While the cause of Crohn’s disease is unknown, it is thought to result from an abnormal or exaggerated response of the immune cells lining the intestine (white blood cells) to the trillions of bacteria that normally reside in the intestine. Why this occurs in some people and not others is not fully understood, but genetics (Crohn’s disease in family members) or factors from the environment (diet, antibiotic exposure) may be important. It is not that someone did something wrong to cause the development of Crohn’s disease.

When the intestine becomes inflamed, abdominal pain, diarrhea, weight loss, blood in the stool, joint pain, rashes, and delayed growth can occur.

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How is Crohn’s Disease Diagnosed?

In general, the tests and processes to confirm that a patient’s symptoms are due to Crohn’s disease are not difficult. It is usually straightforward for the medical community to diagnosis Crohn’s disease. Blood and stool tests may indicate inflammation in the intestines. A colonoscopy is a test where a doctor inserts a long tube (colonoscope) with a camera on the end into the rectum and examines the colon and lower part of the small intestine (terminal ileum). Very often there will be visual changes suggesting inflammation, and sampling of tiny pieces of tissue (biopsies) that are examined under the microscope will confirm a diagnosis. Magnetic resonance enterography (MRE) is a special type of MRI in which doctors can take pictures of the small intestine as well as the rest of the abdominal cavity. MRE uses a large magnet and does not involve the use of x-rays. When combined, these tests can usually confirm a diagnosis of Crohn’s disease.

Is Crohn’s Disease Curable?

At the present time there is no definite cure for Crohn’s disease. That means that there is no treatment currently available that will eliminate the inflammation forever. However, there are therapies (medicines, special diets) that can either decrease inflammation or heal the intestine. However, even if the intestine is healed, that is not considered a cure because the person still has Crohn’s disease. What is not known at the present time is whether any particular person will respond well to a specific therapy prior to that therapy being used.

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What Factors Impact Current Treatment Plans for Children with Crohn's Disease?

While there are several medicines and different diets that are used to treat children with Crohn’s disease, there are also many factors involved in making the most appropriate choice for treatment. These factors include the age of the child, the severity of their symptoms, the extent of the gastrointestinal system that is inflamed, whether there are complications such as severe bleeding, bowel blockage, or even perforation, accompanying arthritis or rash, and any delays in growth. Pediatric IBD specialists will discuss all of these factors with their patient and family when developing a therapy plan that is understood and agreed to by all (joint decision making).

Are There Special Considerations in the Treatment of Crohn’s Disease in Children?

Yes, and these largely relate to the possible effects of Crohn’s disease on growth. Normal growth depends upon many factors including genetic potential (through measurements of adult relatives), nutrition, normal levels and activity of growth hormone, and the presence of other diseases that may affect growth. Poor nutrition as well as inflammation itself can delay growth in children with Crohn’s disease. Normal growth can usually be restored with appropriate therapies, but is important that these therapies are employed early enough and while growth potential still exists. At times we need to use an anti-inflammatory medicine called prednisone for short periods of time. Short courses will not affect growth, but your doctors will try to avoid long term use.

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What Are the Most Important Things to Remember About Treating Crohn's Disease?

As Crohn’s disease is a chronic condition, you and your child should form a trusting and open relationship with your IBD medical provider. It is important to ask questions and make sure you understand the benefits and risks of all therapies, as well as the risks of having bowel inflammation that is not adequately treated. We often focus on risks of medicines while not appreciating that unchecked bowel inflammation can have many long lasting complications.

The other important consideration is that doctors today not only focus on improving symptoms, but also are concerned with actual bowel healing. People can have minimal symptoms and still have considerable inflammation putting them at risk for complications, hospitalizations, and surgery. While colonoscopy or MRE are not always pleasant experiences, they remain the best methods to check for healing and determine the success of current therapies.

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Clinical, Imaging, and Endoscopic Outcomes Of Children Newly Diagnosed with Crohn's Disease