What Facts Should I Know about Crohn’s Disease?
What Is the Medical Definition of Crohn’s Disease?
- Crohn's disease is a serious, chronic disease affecting the digestive system. Chronic means that the disease is long-term and persistent, usually lifelong.
What Are the First Signs of Crohn’s Disease?
- Crohn's disease causes inflammation, most often in the small intestine (which has three parts: duodenum, jejunum, and ileum). The walls and lining of the affected areas become red and inflamed, leading to ulcers and bleeding.
- Crohn's disease sometimes is named by referring to inflammation in the part of the intestine affected, such as jejunoileitis, ileitis, ileocolitis, or colitis (when it involves the large intestine, also called the colon).
What Age Does Crohn’s Disease Start?
- Crohn's disease can appear at any age, but it is most often diagnosed in people between 13 and 30 years of age.
- Along with ulcerative colitis, a similar illness, Crohn's disease is also called inflammatory bowel disease, or IBD. Ulcerative colitis attacks only the large intestine in a continuous manner and does not affect the entire thickness of the bowel wall. Crohn's disease, on the other hand, can occur anywhere in the digestive tract, from mouth to the anus, attacks different sites in the intestine with areas of normal intestine in between ("skip lesions"), and affects the full thickness of the intestinal wall. Both conditions wax and wane: there are times when symptoms reappear or get worse (exacerbations or "flares") and other periods when symptoms get better or go away altogether ("remission").
Is Crohn’s Disease Serious?
- While Crohn's disease causes many problems for people of all ages, it can present special challenges for children and teens. In addition to bothersome and often painful symptoms, the disease can stunt growth, delay puberty, and weaken the bones. Crohn's disease symptoms may sometimes prevent a child from participating in enjoyable activities. The emotional and psychological issues of living with chronic disease can be especially difficult for young people.
What Causes Crohn's Disease in Children and Teens?
Diet and stress do not cause Crohn's disease. They can worsen the symptoms, but they are not the cause of the disease.
We do not know exactly what causes Crohn's disease. Apparently an unknown triggering event alters the immune response in a genetically susceptible person. This abnormal immune response leads to ongoing inflammation of the intestines. Various immune abnormalities are common in individuals with Crohn's disease.
We do not know what makes a person "genetically susceptible" to Crohn's disease. In some people, the disease runs in the family. This is especially true of people who develop the disease at a younger age. Several genes have been linked to the disease, but there is no clear pattern to how these genes interact to cause the disease. Mutations in one gene, called CARD15, are present in a significant percentage of people with Crohn's disease. However, this gene is also frequently present in healthy people who never develop this disease.
We also do not know what the triggering event might be. The bacteria that naturally live in the intestines (or some other bacteria or virus) may play a role in triggering the onset of the disease.
What Does Crohn's Disease Look Like?
What Are the Signs and Symptoms of Crohn's disease in children and teens?
The symptoms experienced by each person with Crohn's disease are determined mainly by the location and extent of the inflammation.
- A majority of children with the disease have inflammation of the lower part of the ileum. More than half of these children also have inflammation in variable segments of the colon.
- Some children have inflammation in the colon only.
- Some have inflammation scattered around the small bowel, mainly in the middle section (jejunum and upper ileum).
- A very small number have inflammation only in the stomach and the uppermost section of the small intestine where the stomach empties into the bowel (duodenum).
The most common symptoms of Crohn's disease are:
- Small intestine: Watery diarrhea, abdominal pain, weight loss, appetite loss, and slowed growth. Delayed growth may precede other symptoms by several years. Often the symptoms are very subtle.
- Colon: Bloody diarrhea with mucus or pus, cramping abdominal pain, urgency to defecate (have a bowel movement)
- Anus/Rectum: Painful defecation, rectal bleeding, rectal pain
- Upper small intestine: Nausea, vomiting, abdominal pain, poor appetite
Complications of Crohn's disease can lead to more serious problems, both in the intestines and elsewhere in the body. These complications often cause symptoms.
- Undernourishment: People with Crohn's disease often are undernourished. This happens for several reasons: poor appetite, avoidance of eating because of pain or discomfort, and poor absorption of nutrients by the damaged intestines.
- Anemia: Symptoms of anemia (a low red blood cell count) include fatigue (feeling tired), malaise (feeling "blah"), shortness of breath, and pale skin (pallor). Intestinal bleeding can cause anemia. Iron, which is necessary to make red blood cells, is not absorbed as well by damaged intestines.
- Intestinal damage: Damage to the intestinal wall can lead to the development of abscesses (pockets of infection and pus), strictures (narrowing), obstruction (blockage), perforation (holes in the wall), and fistulas (abnormal connections between the intestine and other parts of the body, or between two parts of the intestine). Children sometimes develop abscesses and fistulas around the anus. This may be the first symptom of Crohn's disease.
- Colon cancer: The risk of colon cancer is increased slightly in people with Crohn's disease. The cancer usually develops many years after onset of Crohn's disease.
Many people with Crohn's disease have at least one manifestation of the disease outside of the intestine.
- Growth and development problems: Stunted growth and delayed sexual development, or delayed puberty, are common problems in children and teens with Crohn's disease. These problems are believed to be due mostly to undernourishment.
- Arthritis: Joint pain is the most common manifestation of Crohn's disease outside of the intestines. It usually comes and goes and does not deform the joints. It occurs most often in the large joints of the hips and legs and in the spine.
- Skin problems: The most common skin manifestation of Crohn's disease is erythema nodosum, which consists of raised, tender, red bumps (nodules), often on the lower legs. This condition is less common in children than in adults.
- Mouth ulcers: Painful mouth sores may occur during flares of the disease. Occasionally they are the first symptom of the disease.
- Eye problems: Various parts of the eyes can become irritated, inflamed, and painful. In some cases, this can impair vision.
- Urinary problems: Crohn's disease can cause problems in the kidneys (stones), ureters (for example, urinary tract infection), and bladder. These often are a result of chemical imbalances related to poor nutrition and absorption.
- Liver and gallbladder disease: Various liver and gallbladder problems occur in people with Crohn's disease, including hepatitis, fatty liver, gallstones, and inflammation of the bile ducts. In some cases, these are side effects of the treatment rather than of the disease itself.
- Abnormal blood clotting: People with Crohn's disease have an increased risk of blood clots forming in the blood vessels.
Treatment-related side effects: The potent medications used to control Crohn's disease can affect many body systems, including the liver, gallbladder, pancreas, lungs, heart, and nervous system. Symptoms vary with the medication.
When to Seek Medical Care for Crohn's Disease in Children and Teens
- Rectal bleeding or severe pain in the abdomen or rectum requires immediate medical attention.
- Persistent or frequent diarrhea, abdominal pain, or vomiting warrants a prompt visit to the child's health care professional.
- A child with unexplained weight loss, fatigue, joint pain, stunted growth, pubertal delay, or other conditions unusual in a child should be evaluated by a medical professional.
How Is Crohn's Disease in Children and Teens Diagnosed?
The child's evaluation will start with a medical interview and physical examination. The parents or caregivers will be asked questions about the child's:
- symptoms and how they started,
- current medical problems and those in the past,
- current medications now and those in the past,
- family medical problems,
- habits, and
The physical examination will include careful touching of the abdomen and possibly of the rectum. The child's physical growth and sexual development will be assessed. At any time during the evaluation, the child may be referred to a gastroenterologist (a doctor who specializes in diseases of the digestive tract).
There is no lab test that can absolutely confirm that a child has Crohn's disease. Blood tests may be done to look for evidence of the disease, such as inflammation, anemia, or nutritional deficiencies. A stool sample may be collected to look for blood or signs of infection.
The child may undergo imaging studies to detect the extent of the disease and any complications that may have developed.
- Barium contrast studies: This consists of a series of X-rays taken after the child drinks a contrast material containing a chalky substance called barium. The barium allows the intestine to show up better than on a plain X-ray. Barium studies are very useful in defining the nature, distribution, and severity of the disease. Barium studies may include an "upper GI series" (X-rays of the upper part of the digestive system) and a "small bowel follow-through" (X-rays of the small intestine).
- Barium enema: This works on the same principle as the barium contrast studies of the upper digestive system, but the barium is introduced into the lower digestive tract through the rectum. This test is occasionally done to see whether the colon and rectum are involved, and to what extent.
- CT scan or, in some cases, ultrasound is helpful in assessing complications outside of the intestine, such as fistulas, an abscess, or abnormalities of the liver, bile duct, or kidneys. MRI may be used instead.
- Radionuclide-tagged white blood cell scan can be very useful in defining the location and extent of the disease.
Endoscopy is always necessary to make a definite diagnosis.
- Endoscopy involves inserting a thin tube with a light and a tiny camera at the end into a body cavity or organ. The camera transmits pictures of the inside of the organ so that the doctor can see inflammation or bleeding or other signs of disease.
- Both the upper and the lower parts of the digestive tract can be examined endoscopically. Endoscopy of the lower part of the digestive tract is called colonoscopy. Endoscopy of the upper digestive tract is usually called upper endoscopy.
- In both cases, the doctor can use the endoscope to take a biopsy. A biopsy is a tiny sample of tissue taken from the superficial lining on the inside of the digestive tract. These tissues are examined under a microscope by a pathologist (a doctor who specializes in diagnosing diseases by examining tissues and cells in this way).
Endoscopic retrograde cholangiopancreatography (ERCP) is helpful for both diagnosis and treatment in people who have Crohn's disease of the pancreas or bile ducts.
Medical professionals who care for people with Crohn's disease use various systems for tracking symptoms and responses to treatment over time. The Pediatric Crohn's Disease Activity Index (PCDAI) was developed for children and adolescents in 1990 from a similar scale used for adults. The child's health care professional may use this scale to find patterns in disease severity and adjust treatment.
What Is the Treatment for Crohn's Disease in Children and Teens?
The general goals for treatment of children with Crohn's disease are: (1) achieve the best possible control of the disease with the fewest and mildest treatment side effects, (2) promote growth through adequate nutrition, and (3) permit the child to live "a normal life" of school, sports, and other activities.
A child with Crohn's disease should be treated by a team of experts consisting of a primary health care professional, a gastroenterologist, a nutritionist, a social worker, nurses, and a psychologist/counselor and other professionals as needed. A critical factor in successful management of this disease is the family's willingness to participate and cooperate with the team.
What Measures and Remedies Can Be Done at Home to Help Manage the Symptoms of Crohn's Disease in Children and Teens?
Any self-care regimen should be based on the instructions given by the medical team. Parents and caregivers can best help a child by learning all they can about Crohn's disease, understanding how the disease affects a child, and providing support, encouragement, and reassurance to the child. Children who are old enough should be encouraged to learn about their disease and participate in the decisions about their care. Parents and caregivers also play an important role in making certain that the child takes all medical treatment as directed, and gets adequate nutrition.
No special diet is required for children with Crohn's disease. The only rule is to avoid any food that makes the symptoms become worse. This varies from person to person, but foods that cause problems for many people are milk and other dairy products, spicy foods, and high-fiber foods. Patients should avoid foods that are difficult to digest, such as uncooked vegetables, popcorn, seeds, and nuts, since they can block the intestine.
Children and teens with Crohn's disease should remain as active as possible. There is no need to limit a child's physical activity. The only exception is children who develop weak bones or osteoporosis from long-term steroid use. Because their bones may break more easily than usual, they should avoid contact sports.
Do not give a child vitamins and mineral supplements without an OK from the child's health care professional. Ask about giving the child nonprescription medications such as diarrhea remedies, pain relievers, fever relievers, cold and cough medications.
What Medications and Therapies Treat of Crohn's Disease in Children and Teens?
Presently, there is no cure for Crohn's disease. The goal of treatment is to control the disease by (1) minimizing the number and severity of flares, (2) inducing and maintaining remission, and (3) preventing complications. Drug, biologic, and nutritional therapies are the foundations of treatment, but therapy must be tailored for each individual child. The following drugs are most widely used in children with Crohn's disease. Unfortunately, many of these have not been formulated especially for children, and it may take some time to adjust the dose and schedule for each child.
- Aminosalicylates: This is a group of drugs containing 5-aminosalicylic acid (5-ASA). These drugs are related to aspirin and have similar anti-inflammatory effects. They relieve symptoms and maintain remission in many cases with mild or moderate Crohn's disease. They are usually the first choice of treatment because of their relatively mild side effects. Some newer forms of these drugs are designed to work only in the small intestine. This allows the medicine to target only the damaged tissue, avoiding healthy tissues and reducing side effects. Enema and suppository forms are available for children with disease of the lower colon and rectum. Examples include mesalamine (Asacol, Pentasa, Canasa, Rowasa), balsalazide (Colazal), sulfasalazine (Azulfidine), and olsalazine (Dipentum).
- Antibiotics: Treatment with certain antibiotics is helpful in some children with mild to moderate Crohn's disease, especially those with disease of the lower colon, rectum, and/or anus. Examples include metronidazole (Flagyl) and ciprofloxacin (Cipro).
- Corticosteroids: These are potent drugs that suppress the immune system and reduce inflammation. They are usually not the first choice of treatment because they have many side effects, including suppression of growth. They are reserved for moderately severe to severe cases of the disease. In children, they are typically given over a short period to control a severe flare. They are usually given in addition to, not instead of, an aminosalicylate. In some cases, only corticosteroids can control the disease. Children with "steroid-dependent" disease must take these drugs regularly in small doses. Examples include prednisone (Deltasone, Orasone), methylprednisolone (Medrol, Solu-Medrol), budesonide (Entocort), and hydrocortisone rectal enemas (Cortenema).
- Immunomodulators: These drugs interfere with the immune system and suppress immune responses. They usually are not the first choice of treatment because of their side effects, but they are preferred to steroids in children and teens with moderately severe or severe disease. They often are used to treat steroid-dependent disease and disease that does not get better with steroids. They can reduce symptoms, maintain remission, and improve growth. Examples include 6-mercaptopurine (Purinethol), azathioprine (Imuran), and methotrexate (Folex PFS, Rheumatrex).
- Biologic therapies duplicate or enhance natural processes in the body to fight disease. Scientists are finding ways of harnessing the body's natural immune system to fight the inflammation of Crohn's disease. One important newer therapy fights the action of an immune factor called tumor necrosis factor alpha, which may promote inflammation in Crohn's disease. These agents are used to treat active disease and fistulas. These have typically been given intravenously, although a newer medication can be administered subcutaneously at home. Examples include infliximab (Remicade) and adalimumab (Humira).
- Nutritional therapy is another important part of treatment of Crohn's disease. Children who receive appropriate medical therapy and adequate nutrition often experience dramatic reversal of symptoms and increased growth. The exact treatment of nutritional deficiencies depends on the specific situation and should be tailored for each individual child. The child's health care professional can make recommendations. Parents and caregivers may want to consult a nutritionist to devise a plan for meeting the child's nutritional needs. A high-calorie, well-balanced diet is the ideal, but many children with Crohn's disease cannot eat enough to supply all of their nutritional needs.
- Other therapy options include high-calorie formulas and other supplements; and overnight continuous feeding through a nasogastric tube (which goes through the nose to the stomach), gastrostomy tube (which goes through the skin into the stomach), or, less commonly, vein (intravenous or parenteral feeding). In some cases, overnight continuous feedings can be implemented as an effective treatment of Crohn's disease, resulting in decreased inflammation and less disease activity as well as improved growth.
What About Surgery for Crohn's Disease in Children and Teens?
Surgery usually is considered when medical therapy has failed and complications develop. In such cases, growth failure, obstruction, abscess, fistula, hemorrhage, and perforation are all indications for surgery. The usual operation is to remove a section of the intestine (resection), or widen the narrow segment of the intestine (stricturoplasty). Such a "resection" is not a cure, however, since Crohn's disease often recurs after surgery.
Can Crohn's Disease Be Prevented?
There is no known way of preventing Crohn's disease.
What Is the Outlook for a Child or Teen with Crohn's Disease?
The child or teen with Crohn's disease should have regular visits with his or her healthcare team. The purpose of these visits is to reduce symptoms, achieve or maintain remission, and prevent complications. These visits allow the team to monitor symptoms, check for side effects, and adjust treatment if necessary. These visits also allow the parents to communicate any problems to the child's care team. Any emotional or behavioral problems should be reported as well as any physical problems.
Crohn's disease usually can be managed on an outpatient basis. Children and teens with the disease are not routinely admitted to the hospital. Hospitalization is warranted if there is any suggestion of a serious complication (obstruction, perforation, abscess, hemorrhage) or a need for intravenous medication in a severe flare.
Crohn's disease is a serious disease that may have a big impact on the life of a child or teen. But it usually is not a fatal disease, and with appropriate treatment and support, most children do very well and are able to attend school and participate in sports and daily activities.
Where Can I Get Information About Support Groups for My Child and Family?
Living with the effects of Crohn's disease can be difficult. Sometimes you or your child may feel frustrated, perhaps even angry or resentful. Oftentimes it helps to have someone to talk to about their situation.
Support groups consist of people in a similar situation. They provide reassurance, motivation, and inspiration. They help you see that your situation is not unique, and that gives you power. They also provide practical tips on coping with this disorder. Support groups are valuable to parents, siblings, and the affected child, especially teens.
Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, ask your health care provider or contact the following organizations or look them up on the Internet. If you do not have access to the Internet, go to a public library.