What patients and families need to know
Pediatric Crohn Disease
What is Crohn Disease?
Crohn disease is an inflammatory bowel disease (IBD). It is a chronic condition that may recur at various times over a lifetime. It usually involves the small intestine, most often the lower part called the ileum. However, inflammation may also affect the entire digestive tract, including the mouth, esophagus, stomach, duodenum, appendix, or anus.
Prevention & Risk Assessment
Prevention & Risk Assessment
What causes Crohn disease?
There are many theories regarding Crohn disease, but none has yet been proven. One theory suggests that some agent, perhaps a virus or bacteria, affects the body's immune system and triggers an inflammatory reaction in the intestinal wall. Although there is a lot of evidence that patients with this disease have abnormalities of the immune system, it is not known whether the immune problems are a cause or a result of the disease.
Physicians believe that there is little proof that Crohn disease is caused by emotional distress.
Who is affected by Crohn disease?
While Crohn disease may affect persons of all ages, the age group most often affected is 15 to 35 years. However, Crohn disease may also be seen in young children. Males and females are affected equally. It appears to run in some families, with about 20 percent of people with Crohn disease having a blood relative with some form of inflammatory bowel disease. In those who have a family history, it is very likely that Crohn disease will begin in the teens and twenties.
What are the symptoms of Crohn disease?
The following are the most common symptoms for Crohn disease. However, each individual may experience symptoms differently. Symptoms may include:
- Abdominal pain, often in the lower right area
- Diarrhea, sometimes bloody
- Rectal bleeding
- Weight loss
- Obvious blood in the stools or black, tar-like stools
- Weight loss
- Failure to grow
- Joint pain
- Rectal fissure
Some people have long periods of remission when they are free of symptoms, sometimes for years. There is no way to predict when a remission may occur or when symptoms will return.
The symptoms of Crohn disease may resemble other conditions or medical problems. Consult your child's physician for a diagnosis.
How is Crohn disease diagnosed?
People who have experienced chronic abdominal pain, diarrhea, fever, weight loss, and anemia may be examined for signs of Crohn disease. In addition to a complete medical history and physical examination, diagnostic procedures for Crohn disease may include:
- Blood tests. To determine if there is anemia resulting from blood loss, or if there is an increased number of white blood cells, suggesting an inflammatory process.
- Stool culture. To determine if there is blood loss, or if an infection by a parasite or bacteria is causing the symptoms.
- Endoscopy. A test that uses a small, flexible tube with a light and a camera lens at the end (endoscope) to examine the inside of part of the digestive tract. Tissue samples from inside the digestive tract may also be taken for examination and testing.
- Colonoscopy. A procedure that allows the physician to view the entire length of the large intestine, and can often help identify abnormal growths, inflamed tissue, ulcers, and bleeding. It involves inserting a colonoscope, a long, flexible, lighted tube, in through the rectum up into the colon. The colonoscope allows the physician to see the lining of the colon, remove tissue for further examination, and possibly treat some problems that are discovered.
- Biopsy. Taking a sample of tissue (from the lining of the colon) for examination in a laboratory.
- Upper GI (gastrointestinal) series (also called barium swallow). A diagnostic test that examines the organs of the upper part of the digestive system: the esophagus, stomach, and duodenum (the first section of the small intestine). A fluid called barium (a metallic, chemical, chalky, liquid used to coat the inside of organs so that they will show up on an X-ray) is swallowed. X-rays are then taken to evaluate the digestive organs. An upper GI with a small bowel-follow through may be used to assist in the diagnosis of Crohn's disease.
- Barium enema. A procedure performed to examine the large intestine for abnormalities. Barium is given into the rectum as an enema. An X-ray of the abdomen will show strictures (narrowed areas), obstructions (blockages), and other problems.
What is the treatment for Crohn disease?
At this time there is no cure for Crohn disease; however, several methods are helpful in controlling it. The usual goals of treatment are to:
- Correct nutritional deficiencies.
- Control inflammation.
- Relieve abdominal pain, diarrhea, and rectal bleeding.
Specific treatment will be determined by your child's physician based on the following:
- Your child's age, overall health, and medical historyThe extent of the disease
- Expectations for the course of the disease
- Your child's tolerance for specific medications, procedures, or therapies
- Your opinion or preference
Treatment may include:
- Drug therapy (anti-inflammatory medications, corticosteroids, immune system suppressors, biologic therapies, antibiotics, anti-diarrheal medications, and fluid replacements). Abdominal cramps and diarrhea may be helped by medications, which often lessen the inflammation in the colon. More serious cases may require steroid drugs, antibiotics, or drugs that affect the body's immune system.
- Diet and vitamin supplements. No special diet has been proven effective for preventing or treating Crohn disease. Some symptoms are made worse by milk, alcohol, hot spices, or fiber, but this may not be true for everyone. Large doses of vitamins are ineffective and may even cause harmful side effects.
Children lose weight because of inadequate calorie intake, which can be due to several factors:
They may avoid eating to prevent pain associated with digestion.If favorite foods are eliminated from the diet, they may not feel enthusiastic about eating.
- They may absorb nutrients poorly through the inflamed digestive tract.
- They have greater nutritional needs than average because of their disease.
Nutritional supplements or special high-calorie liquid formulas may sometimes be suggested, especially for children with delayed growth.
- Feeding through a vein. A small number of patients, who temporarily need extra nutrition, may need periods of feeding by vein (intravenously).
- Surgery. Crohn disease may be helped by surgery, but it cannot be cured by surgery. The inflammation tends to return to the areas of the intestine next to the area that has been removed. Surgery may help to either relieve chronic symptoms of active disease that does not respond to medical therapy or to correct complications, such as intestinal blockage, perforation, abscess, or bleeding.
Types of surgery include:
- Drainage of abscesses or removal of a section of bowel due to blockage.
- Ostomy. Some people must have part of their intestines removed, and a new method of removing the stool from the body is created. The surgery to create the new opening is called ostomy and the new opening is called a stoma.
Different types of ostomy are performed depending on how much and what part of the intestines are removed, and may include:
- Ileostomy. The colon and rectum are removed and the bottom part of the small intestine (ileum) is attached to the stoma.
- Colostomy. A surgically-created opening in the abdomen through which a small portion of the colon is brought up to the surface of the skin. Sometimes, a temporary colostomy may be performed when part of the colon has been removed and the rest of the colon needs to heal.
- Ileoanal reservoir surgery. An alternative to a permanent ileostomy, this procedure is completed in two surgeries. First, the colon and rectum are removed and a temporary ileostomy is performed. Second, the ileostomy is closed and part of the small intestine is used to create an internal pouch to hold stool. This pouch is attached to the anus. The muscle of the rectum is left in place, so the stool in the pouch does not leak out of the anus. People who have this surgery are able to control their bowel movements.
What is the long-term outlook for a child with Crohn's disease?
Crohn's disease is a chronic condition that may recur at various times over a lifetime. Children may experience physical, emotional, social, and family problems as a result of the disease, increasing the importance of proper management and treatment of the condition.
The following chart summarizes some of the problems children may face.
|Emotional Responses||Social Problems||Effects on the Family|
Mood swings due to illness and medications
Blaming self for disease
Frustration with physical problems
Feeling different from everyone else
Anger: "Why me?"
Worry about appearance, slow growth, weight loss
Feeling vulnerable; unable to rely on body to function normally like everyone elseFrustration at physical limitations, being unable to keep up with friends
Coping with being teased by classmates
Embarrassment over frequent bathroom use
Peer pressure regarding food choices
Handling other people's lack of knowledge about the disease
Change in physical staminaChanges in ability to concentrate on schoolwork
Understanding the needs of the child with Crohn's disease, as well as the rest of the family's needs
Need for mutual support of all family members
Need for all family members to learn about the disease and understand its effects on the childLearning to cope with unexpected changes in family routine
Trying to channel frustration when angry
Respect for privacyEncouraging independence of the child with Crohn's disease
The problems listed above can be very frustrating for the child with Crohn’s disease and his or her family. However, just as intestinal inflammation in Crohn’s disease can be managed with medical therapies, coping difficulties & psychological distress can be managed by a multidisciplinary approach to care. In addition to excellent medical care of the child with Crohn’s disease, we provide the following services to ensure a comprehensive approach:
- Formal education about Crohn’s disease, including disease process, medications & nutrition
- Nutritional support provided by a registered dietitian
- Social work support for community resources & assistance with insurance as needed
- Access to mental health services as needed
- Collaboration with your child’s school nurse to ensure continuity of care
If you have concerns about the way your child is coping with his or her diagnosis, please let us know – our goal is to meet the specific needs of each patient and family.
Eighteen months after Christopher and Julie Dobry had their son Jared, they noticed something was not right. He was experiencing intense stomach discomfort and digestive issues that seemed to only worsen over time. For years afterward, they traveled from doctor to doctor trying to find the right diagnosis.
Our pediatric gastroenterology experts provide comprehensive services for children with IBD, including Crohn disease and ulcerative colitis.
Our gastroenterology experts provide expert diagnosis and treatments for children with digestive, liver and nutrition disorders.
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Around Thanksgiving during her sophomore year of high school, Katheryn felt like throwing up after dinner. She began to throw up regularly, but frustratingly didn't know why. After seeing multiple doctors, Katheryn was finally diagnosed correctly.
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