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Crohn's Disease in Children

What is Crohn's Disease?

Crohn's disease is one of the diseases called inflammatory bowel disease / IBD.  

In Crohn's disease, swelling and irritation can be found in the lining of the intestine. It can also involve the whole thickness of the bowel wall. Crohn's disease is usually in the lower part of the small intestine, called the ileum. However, it can affect any part of the digestive tract, from where food is taken in (the mouth) to where food comes out (the anus).

Gastrointestinal tract picture / illustration by Cincinnati Children's

Some patients with Crohn's disease have long periods of remission (when symptoms disappear). This may last months or years. However, there is no way to tell when a remission will happen or when disease symptoms will return. There is no cure for Crohn's disease.

About 1.4 million Americans have inflammatory bowel disease. People of all age groups can have Crohn's disease, but it usually begins in the late teens and early adulthood. Twenty percent of all Crohn's cases affect children.

The disease affects males and females equally, but Crohn's disease tends to run in families and certain ethnic groups. About 20 percent of people with Crohn's disease have a blood relative with some type of IBD. For those patients with a family history, it is very likely that Crohn's disease will begin in the teens and 20s.

Crohn's Disease Causes

There is no known cause for Crohn's disease, but there are many theories. One theory is that the body's immune system reacts to a virus or bacteria. This reaction causes swelling in the intestine.

It has been proven that people with Crohn's disease have problems with their immune system, the part of the body responsible for fighting off infection. It is not known if these problems are a cause of the disease or a result of the disease. There is little evidence that Crohn's disease is caused by emotional distress.

Crohn's Disease Symptoms

Crohn's disease can be hard to diagnose, as its symptoms can be like other intestinal disorders. Patients can have a wide range of symptoms. However, each person may experience symptoms in a different way.

  • Loose, watery, or frequent bowel movements (diarrhea)
  • Abdominal pain
  • Rectal bleeding (blood on bowel movements)
  • Fever
  • Lack of appetite
  • Weight loss
  • Stunted growth
  • Fatigue (tiredness)
  • Joint pain

Some patients may be in remission for a long time, which means they are free of symptoms.

Crohn's Disease Diagnosis

A complete physical exam and medical history are taken to help diagnose Crohn's disease. In addition, several tests may be needed.

  • Blood tests check for anemia (low red blood cell count). The tests can also show if there is an increased number of white blood cells, which might mean that there is an infection or inflammation somewhere in the body.
  • Stool testing- There are different types of tests that are done to check for infection by a parasite, virus or bacteria. Stool can also be tested for occult (hidden) blood that is not seen on the stool. There are also stool tests that can tell if there is inflammation in the intestines.
  • Upper endoscopy is a procedure that uses a small, flexible tube with a light and a camera lens at the end (endoscope). This allows the doctor to examine the inside of the esophagus, stomach and duodenum (the first part of the small intestine). Tissue samples may be taken for further examination (see biopsy).
  • Colonoscopy is a test that uses a long, flexible tube with a light and camera lens at the end (colonoscope). This allows the doctor to examine the large intestine. Tissue samples may be taken for further examination (see biopsy).
  • Biopsy is a tissue sample that is taken for examination and testing in a laboratory. For Crohn's disease, the tissue sample is taken from inside the digestive tract. A biopsy is usually done during a colonoscopy or upper endoscopy.
  • Upper gastrointestinal / GI series is a procedure that examines the stomach and small intestine. Barium is swallowed and then followed through the intestine with an X-ray.
  • CT (Computed Tomography) scan is a CAT scan which uses X-ray to take pictures of the inside of the body. This scan allows the doctors to look at the entire bowel for thickening or inflammation.
  • MRI (Magnetic Resonance Imaging) takes pictures of the entire body but does not use radiation. This scan also allows the doctors to look at the entire bowel for thickening or swelling.

Crohn's Disease Treatment

There is no cure for Crohn's disease, but treatment can help control the disease. The treatment depends upon many things:

  • Location of the disease
  • Problems that the disease may be causing
  • How the patient responds to treatment
  • The amount of inflammation that is present

The goal of the treatment is to:

  • Control symptoms and prevent complications of Crohn’s disease
  • Correct problems the patient may be having with nutrition
  • Help keep the disease in remission
  • Improve the quality of life

When the disease is under control, treatment tries to keep the symptoms from coming back (a "flare"). Treatment may include:

Medication

Many different types of drugs are used to treat Crohn's disease.

  • Anti-inflammatory drugs (aminosalicylates or 5-ASA drugs) are usually used to treat mild to medium symptoms. Some examples are Asacol HD, Pentasa, Lialda, Apriso and Colazal.
  • Corticosteroids, such as prednisone, help to put a patient with medium to severe symptoms into remission. These drugs are not good to use for a long time because of side effects.
  • Drugs that suppress or quiet the immune system (immunomodulators) are used in medium to severe Crohn's disease to help patients stay in remission. Some examples are Imuran (azathioprine), purinethol (6-MP) and methotrexate.
  • Antibiotics may also be used to treat bacteria in the small intestine that can keep the inflammation going. Some examples are Flagyl (metronidazole), Cipro (ciprofloxacin) and Rifaxamin.
  • Biologics are a newer drug approved by the US Food and Drug Administration for treating medium to severe Crohn's disease that does not respond to the other medications. This medicine is given through a vein (intravenously) or as an injection.
  • JAK Inhibitors that also suppress the immune system to help control the inflammatory process
  • Enteral therapy provides nutrition as a formula rather than eating a regular diet. Enteral therapy has been shown to be effective in treating Crohn’s disease in some patients. There are no side effects to enteral therapy.

Vitamin Supplements

Good nutrition is an important part of treating Crohn's disease. No special diet has been proven to be the best for preventing or treating Crohn's disease. Some patients find that symptoms are worse when they have milk, alcohol, hot spices or food containing fiber. Nutritional supplements or special high-calorie liquid formulas are sometimes suggested, especially for children with poor growth. Vitamins such as vitamin D and iron are also checked regularly, and vitamin supplements may be ordered by the doctor.

Surgery

When medication is not able to control the disease or when there are other problems (such as a tight area or hole in the bowel), surgery is needed. Surgery may make symptoms better, but it will not cure Crohn's disease, as the disease can come back. Get as much information as you can about surgery from your doctors, nurses and other patients before making your decision about surgery.

  • Bowel resection: When the surgeon removes a section of the intestine damaged by Crohn’s disease or contains a fistula. A fistula occurs when a sore or ulcer in the intestinal tract tunnels through the intestine to surrounding tissue. When a fistula becomes infected, it can create a pocket of pus called an abscess. Fistulas and abscesses are common complications of Crohn’s disease. They can occur within the intestine or in the anus. Medicine can sometimes bring these conditions under control, but if not, the patient may need surgery.
  • Anastomosis: When the surgeon removes the diseased part of the intestine, and joins the two ends of the healthy bowel together.
  • Ostomy: In some patients, it may not be possible to join the two ends of the intestine together. In this case, the surgeon creates a small opening in the front of the abdominal wall. Then the tip of the bowel is brought to the skin's surface. The surgically created opening is called an ostomy. The actual end of the bowel that can be seen protruding through the abdominal wall is called a stoma. Waste leaves the body through the stoma and goes into a bag worn over the opening. Patients who undergo this procedure can live normal, active lives.

In rare cases, patients may need to have their intestine surgically removed. This is called a colectomy. In most situations, the surgeon is able to create an internal pathway for stool to pass, which means your child will not need a colostomy bag.

Additional Resources

Watch a Video

In a film created by Jesse Dylan, care providers participating in ImproveCareNow discuss how the program's collaborative approach is improving the health of children with Crohn’s disease and ulcerative colitis.

Last Updated 07/2022

Reviewed By Jen Willoughby

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