Crohn's disease is a form of inflammatory bowel disease (IBD), which involves ongoing (chronic) inflammation of the gastrointestinal tract. Crohn's-related inflammation usually affects the small and large intestines, but may occur anywhere from the mouth to the end of the rectum (anus).

Causes

While the exact cause of Crohn's disease is unknown, the condition is linked to a problem with the body's immune system response. Normally, the immune system helps protect the body, but with Crohn's disease the immune system can't tell the difference between good substances and foreign invaders. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder.

A person's genes and environmental factors seem to play a role in the development of Crohn's disease. The body may be overreacting to normal bacteria in the intestines. The inflammation related to Crohn's disease frequently occurs at the end of the small intestine that joins the large intestine, but it may occur in any area of the digestive tract. There can be healthy patches of tissue between diseased areas. The ongoing inflammation causes the intestinal wall to become thick.

Symptoms

Symptoms depend on what part of the gastrointestinal tract is affected. Symptoms range from mild to severe, and can come and go with periods of flare-ups.

The most common symptoms of Crohn's disease are:

• Abdominal pain
• Diarrhea
• Blood in stool
• Weight loss
• Poor growth
• Delayed puberty
• Fatigue
• Poor appetite
• Joint pains
• Fever
• Vomiting

Other symptoms may include:

• Abdominal fullness and gas
• Clotting problems (deep vein thrombosis)
• Constipation
• Eye inflammation
• Fistulas (usually around the rectal area, may cause draining of pus, mucus or stool)
• Gastrointestinal bleeding
• Kidney stones
• Liver inflammation
• Loss of appetite
• Pain with passing stool
• Rectal bleeding
• Skin rash
• Swollen gums
• Unintentional weight loss

Exams and Tests

A physical examination may reveal an abdominal mass or tenderness, skin rash, swollen joints, or mouth ulcers. Tests to diagnose Crohn's disease may include:

Blood Tests

• CBC (Complete Blood count) - measures red and white blood cells and platelet count
• ESR (Erythrocyte Sedimentation Rate) - a marker of inflammation in the body
• CRP (C-Reactive Protein) - a marker of inflammation in the body
• Chemistry Panel - measures liver and kidney function, nutritional status
• Inflammatory Bowel Disease Antibody Panel - looks for specific antibodies (proteins) in the blood that may support a diagnosis of Crohn's Disease

Stool Tests

• Hemoccult - detects blood in the stool that cannot be seen
• Culture - detects a bacterial infection of the intestine
• Clostridium difficile (C. diff) - detects specific bacteria in the colon which can cause diarrhea

Endoscopy

All children suspected to have inflammatory bowel disease, such as Crohn's disease, will need a test called Upper GI endoscopy and colonoscopy. While your child is asleep under the care of an anesthesiologist, a long lighted tube containing a camera allows the GI physician to see the lining of the intestine and take biopsy samples to help determine the areas that are inflamed. The Upper GI endoscopy examines the esophagus (swallowing tube), stomach, and upper small intestine. A colonoscopy examines the end of the small intestine and the entire large intestine. Your child will feel no pain or discomfort during these procedures.

Capsule Endoscopy

This test is used for examining areas in the digestive tract that cannot be visualized during standard endoscopic examination. Your child will be asked to swallow a capsule containing a camera that takes pictures throughout the small intestine. The capsule may be placed endoscopically in very young children or children who have trouble swallowing. The capsule transmits a radio signal to a belt which is worn for eight hours following ingestion of the capsule.

Imaging Studies

• Small bowel barium X-ray - Your child will be asked to drink a small amount of barium, and several x-rays will be done to follow the barium as it passes through the small intestine. This study looks for disease in the small intestine which cannot be seen with endoscopy.
• Ultrasound, CT scan, MRI - These are special X-rays to look for problems with other organs (liver, pancreas, gallbladder, kidneys). These tests should not be painful to your child. An IV may be required for a CT scan or MRI.

Treatment

Medicines are the main treatment for Crohn's disease. The following medicines are the most common, but other medications may be prescribed as needed.

• Aminosalicylates (5-ASAs) are medicines that help control mild to moderate inflammation. Some forms of the drug are taken by mouth; others must be given rectally.
• Corticosteroids (prednisone and methylprednisolone) are used to treat moderate to severe Crohn's disease. They may be taken by mouth or inserted into the rectum.
• Immunomodulators such as azathioprine or 6-mercaptopurine help reduce the need for corticosteroids and can help heal some fistulas.
• Antibiotics may be prescribed for abscesses or fistulas.
• Biologic therapy is used to treat patients with severe Crohn's disease that does not respond to any other types of medication. Infliximab (Remicade) and adalimumab (Humira) are approved for Crohn's disease. They belong to a class of drugs called monoclonal antibodies, which help block an immune system chemical that promotes inflammation. Infliximab is also approved for patients with fistulous disease. Other related drugs are being studied.

Unfortunately, some children with Inflammatory Bowel Disease will require surgery to remove a part of their intestine. We utilize surgery in patients who are unresponsive to all of our medications yet still having symptoms of pain and diarrhea, or who have developed a narrowing of their intestine which will not resolve with medication. Our pediatric surgeons have extensive experience in performing surgery in children with Inflammatory Bowel Disease.

Growth

No specific diet has been shown to improve or worsen the bowel inflammation in Crohn's disease. However, eating a healthy amount of calories, vitamins, and protein is important to avoid malnutrition and weight loss.

Children with Crohn's disease frequently lose weight and stop getting taller before they are diagnosed. We believe growth is a critical outcome in treating pediatric patients with Inflammatory Bowel Disease. We tailor our treatment with medications to help children regain lost weight and begin growing taller. However, many children require more intense nutritional therapy to improve their growth. At each clinic appointment, we will carefully measure your child's height and weight. We work carefully with our dieticians to find the most appropriate nutrition plan for our patients with Inflammatory Bowel Disease.

Oral Nutritional Supplements

Patients who have Inflammatory Bowel Disease frequently get pain or cramping when they eat, or feel full more quickly after eating only a small amount of food. Supplements like Pediasure®, Boost®, or Ensure® provide excellent nutrition in addition to a regular diet. Modulen® was designed specifically for patients with Inflammatory Bowel Disease. Any of these can be taken once or more daily with meals or as a snack.

Calcium and Vitamin D

Inflammatory Bowel Disease can lead to premature thinning of the bones. This can be worsened by steroids. It is critical that patients with Inflammatory Bowel Disease receive an adequate amount (above what a normal child would require) of Calcium and Vitamin D. Your physician will recommend a specific amount of Calcium and Vitamin D based upon the age of your child. Each 8 ounce glass of milk contains 300 mg of Calcium. Some children may require a Calcium supplement such as Tums®, Viactiv®, or Caltrate®.

Parenteral Nutrition

Parenteral nutrition is sugar, fat, and protein which are given through an IV. This is only rarely required in children with severe Inflammatory Bowel Disease who are unable to take enough nutrition by eating and drinking or have had severe weight loss prior to their diagnosis. If parenteral nutrition is required, your physician will carefully manage the ingredients in the parenteral nutrition by following several blood tests.

Coping

It is natural that some children may become overwhelmed with the thought of having a lifelong illness. They will need the support of family, friends, and sometimes, a professional counselor. Many of our patients and their families benefit from attending support groups and summer camps for children with Inflammatory Bowel Disease. Many of these activities are sponsored by the Crohn's and Colitis Foundation of America (CCFA), and information is available at ccfa.org.

Research

The pediatric gastroenterologists at Riley Hospital for Children Gastroenterology at Indiana University Health are actively participating in a large variety of local and national research studies. These studies are examining new treatments and new tests to help with diagnosis. We are also participating in studies about the quality of life in children with Inflammatory Bowel Disease. Finally, we are performing sophisticated studies about protein and calorie metabolism in these children. We are the recipients of several grants to continue this research. Your physician may ask you about your interest in participating in these studies.

Points to Remember

• Crohn's disease is a form of inflammatory bowel disease that can cause inflammation anywhere from the mouth to the anus.
• Symptoms are varied and can come and go with periods of "flare-ups." Some of the most common symptoms include abdominal pain, diarrhea, blood in stool, weight loss and vomiting.
• Crohn's disease is a life-long condition but can often be treated with medications.
• Eating a healthy diet is important to avoid malnutrition and weight loss.

For More Information

Crohn's and Colitis Foundation of America - ccfa.org/chapters

North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition - NASPGHAN.org

Children's Digestive Health & Nutrition Foundation - cdhnf.org