What is Crohn's disease in children?

Crohn's disease is when there is redness, swelling (inflammation), and sores along the digestive tract. It is part of a group of diseases known as inflammatory bowel disease.

Crohn's disease is a long-term (chronic) condition. It may come and go at different times in your child’s life. In most cases, it affects the small intestine, most often the lower part called the ileum. In some cases, both the small and large intestines are affected.

Sometimes the inflammation may affect the whole digestive tract. This includes the mouth, the food pipe (esophagus), the stomach, the first part of the small intestine (duodenum), the appendix, and the anus.

What causes Crohn's disease in a child?

Experts don’t know what causes Crohn's disease. It may be that a virus or bacteria affects the body's infection-fighting system (immune system). The immune system may have an abnormal inflammation reaction in the intestinal wall that doesn’t stop.

Many children with Crohn's disease have an abnormal immune system. But experts don’t know if immune problems cause the disease. They also don’t know if Crohn's disease may cause immune problems

Which children are at risk for Crohn's disease?

Crohn's disease may happen at any age. It most often affects people ages 15 to 35. But Crohn's may also occur in young children. It affects both males and females equally.

Children or teens may be more at risk for Crohn's disease if they:

• Have a family history of Crohn's disease. In most cases, this is a close relative such as a parent, sister, or brother.

• Are white

• Are American Jews of European descent

• Live in developed countries, in cities, and in northern climates

• Smoke

What are the symptoms of Crohn's disease in a child?

Each child’s symptoms may vary. Symptoms may include:

• Belly (abdominal) pain, often in the lower right area

• Loose stool (diarrhea), sometimes bloody

• Rectal bleeding

• Weight loss

• Fever

• Delayed growth

• Joint pain

• A cut or tear in the anus (anal fissure)

• Rashes

Some children may have no symptoms for a long time, even years. This is called being in remission. There is no way to know when remission may occur or when your child’s symptoms will return. But Crohn's is a chronic condition. Unless it is treated, symptoms usually return or stay.

The symptoms of Crohn's disease may look like other health problems. Always see your child's healthcare provider for a diagnosis.

How is Crohn's disease diagnosed in a child?

Your child may be checked for signs of Crohn's disease if your child has had long-term:

• Belly (abdominal) pain

• Loose stools (diarrhea)

• Fever

• Weight loss

• A loss of healthy red blood cells (anemia). This can make your child feel tired.

Your child’s healthcare provider will take a health history and do a physical exam. Other tests for Crohn's disease may include:

• Blood tests. These are done to see if your child has fewer healthy red blood cells because of blood loss. This is called anemia. These tests also check if your child has a higher number of white blood cells. That might mean there is an inflammation problem. Other blood tests can look for abnormal antibodies. The healthcare provider may use this result to help diagnose or classify the disease.

• Stool tests Stool tests can be done to see if an infection by a parasite or bacteria is causing the symptoms. They can also check for inflammation of the bowel that might mean Crohn's and inflammatory bowel disease.

• Endoscopy. This test checks the inside of part of the digestive tract. It uses a small, flexible tube called an endoscope. The tube has a light and a camera lens at the end. It is put into your child's mouth. Then it is moved through the esophagus, stomach, and into the top of the small intestine. Tissue samples or biopsies from inside the digestive tract may also be taken for testing.

• Colonoscopy. This test looks at the full length of the large intestine. It can help check for abnormal growths, inflamed tissue, sores or ulcers, and bleeding. It uses a long, flexible, lighted tube called a colonoscope. The tube is put into your child’s rectum up into the colon. This tube lets the healthcare provider see the lining of the colon and the bottom of the small intestine and take out a tissue sample or biopsy to test it. Your child’s provider may also be able to treat some problems that may be found.

• Biopsy. A tissue sample is taken from the lining of the colon and checked in a lab.

• Upper GI series or barium swallow. This test looks at the organs of the top part of the digestive system. It checks the food pipe (esophagus), the stomach, and the first part of the small intestine (duodenum). Your child swallows a fluid called barium. This is a thick, chalky fluid. It is used to coat the inside of organs so that they will show up on an X-ray. Then X-rays are taken to check the digestive organs.

• Lower GI series or barium enema. This test checks the large intestine, including the colon and rectum. A thick, chalky fluid called barium is put into a tube. It is inserted into your child’s rectum as an enema. Barium coats the organs, so they can be seen on an X-ray. An X-ray of your child’s belly will show if there are any narrowed areas called strictures. It will also show any blockages or other problems.

• CT enterography or MR enterography. These imaging tests look at the small bowel and can show any inflammation or complications.

• Capsule endoscopy. This is a special capsule that your child swallows. The capsule is a camera that takes pictures of the small bowel.

How is Crohn's disease treated in a child?

Crohn's disease is a long-term (chronic) disease. There is no cure for it. But there are some things that can help to control it. Treatment for the disorder has 4 goals:

• Correct nutritional problems

• Control the swelling and inflammation

• Ease symptoms, such as belly pain, diarrhea, and rectal bleeding

• Keep complications from occurring. These include tunnels of inflammation to other organs (fistulas) and narrowing of the intestine (stricture) that causes blockages.

Your child’s healthcare provider will create a care plan based on:

• Your child's age, overall health, and medical history

• How serious your child’s case is

• How well your child handles certain medicines, treatments, or therapies

• If your child’s condition is expected to get worse

• Your opinion and what you would like to do

Your child’s treatment may include the following.

What are the complications of Crohn's disease in a child?

Children with Crohn's disease may lose weight because they don’t get enough calories. This can happen because a child:

• May not eat to prevent the pain that is linked to digestion

• May want to eat only favorite foods 

• May not absorb nutrients well through the inflamed digestive tract

• Has greater nutritional needs than normal because of the disease

Nutritional supplements or special high-calorie liquid formulas may be suggested. These are often advised if a child has delayed growth.

Crohn's disease may also cause other health problems, such as:

• A blocked intestine

• A type of tunnel, called a fistula, in nearby tissues. This can get infected.

• Rips or tears, called fissures, in the anus

• Problems with liver function

• Gallstones

• A lack of some nutrients, such as calories, proteins, and vitamins

• Too few red blood cells or too little hemoglobin in the blood (anemia)

• Bone weakness, either because bones are brittle (osteoporosis) or because bones are soft (osteomalacia)

• A nervous system disorder where legs feel painful, called restless leg syndrome

• Arthritis

• Skin problems

• Eye or mouth redness or swelling (inflammation)  

After extensive or multiple bowel resection surgeries, a condition called short bowel syndrome can occur. It often happens after a large part of the small intestine is removed. The body then may not be able to digest and absorb some vitamins, foods, and nutrients, including water. This poor absorption of food and nutrients is called malabsorption. It causes diarrhea. It can also lead to poor growth and development. Common symptoms of malabsorption include:

• Loose stool (diarrhea)

• Large amounts of fat in the stool (steatorrhea)

• Weight loss or poor growth

• Fluid loss or dehydration

• Lack of vitamins and minerals

How can I help my child live with Crohn's disease?

Crohn's disease is a long-term (chronic) condition. It may come and go at different times during your child’s life. Children may have physical, emotional, social, and family problems as a result of the disease. It’s important to work closely with your child’s healthcare provider to manage and treat the condition.

Be sure to have the provider check your child’s health on a regular basis. This includes checking your child's:

• Growth

• Nutrition levels

• Bone mineral density

• Risk for infections

• Immunization status

• Any liver, eye, or skin problems

• Emotional well-being

Emotional stress can make Crohn's disease worse. Children may be helped by seeing a mental health provider who can teach them stress-reduction methods. Your child may also have depression or anxiety. This disease can be especially frustrating for teens because flareups can make them more dependent on their parents at a time when they want their independence.

This condition can also place great emotional and physical stress on caregivers and family members. Ask your provider about in-home care, counseling referrals, and community resources if you need additional support.

When should I call my child's healthcare provider?

Call your child’s healthcare provider if your child has symptoms of Crohn's disease, including:

• Belly pain

• Loose stool

• Rectal bleeding

• Weight loss

• Fever

• Vomiting that continues

• Sores (lesions) or leakage at the anus

Call your child's provider right away if your child has Crohn's disease and regular symptoms change or new symptoms appear.

Key points about Crohn's disease in children

• Crohn's disease is when there is redness, swelling (inflammation), and sores along the digestive tract.

• It is a type of inflammatory bowel disease.

• In most cases, it affects the small intestine. But it may also affect the whole digestive tract.

• It is a long-term (chronic) condition. It may come and go at different times in your child’s life.

• There is no cure. Making some diet changes may help ease symptoms.

• Medicine may help. Surgery may be needed. Medicines are usually needed for the long term.

• The disease can result in emotional problems, such as depression and anxiety. A child's mental health needs to be watched. Get professional help when needed. Caregivers and other family members may also need support.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.