What is Crohn's disease?

Crohn's disease is a long-term (chronic) condition and belongs to a category of disease known as Inflammatory Bowel Disease. Crohn's disease causes redness, swelling, and sores along the digestive tract.

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?

Researchers believe that Crohn's disease is caused by a combination of several factors. Certain susceptibility genes have already been identified for IBD, two of them established for Crohn's disease. Most IBD researchers believe that something in the environment (such as a virus) triggers an inflammatory response in the gut. In people who may not have the genetic predisposition to Crohn's disease, this inflammatory response is self-limited, meaning it resolves on its own. However, in people with Crohn's disease, there is genetic influence that maintains the inflammatory response.

Who is 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?

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

How is Crohn's disease diagnosed?

Your child may be checked for signs of Crohn's disease if he or she 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. Some of the tests can also check for signs of acute (current) and chronic inflammation in the blood stream. Sometimes long term gut inflammation can lead to poor absorption or protein loss in the gut, which can also be checked in the blood.

• Stool studies. This could be done to see if there is any blood in the stool, even if it is not visible to the human eye. Some studies can check for infection by a parasite or bacteria. Other tests could look for inflammation in the stool.

• Upper 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. 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 provider see the lining of the colon 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. Tissue samples or biopsies from inside the digestive tract may also be taken for testing.

• Capsule Endoscopy. This test uses a camera shaped like a pill to look at the inside of the digestive tract that cannot be seen using the upper endoscopy and colonoscopy.

• 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.

• Small bowel follow through. This test evaluates the small intestine with an X-ray. 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 for strictures or blockages or other problems.

• 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.

How is Crohn's disease treated?

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 3 goals:

• Correct nutritional problems

• Control the swelling and inflammation

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

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.

Diet

Changes in your child's diet may help to ease symptoms. In some cases, symptoms are made worse by milk, hot spices, or fiber. In some patients, a specific diet could be utilized as a treatment for Crohn's disease. Talk with your child's provider.

Medicine

Medicines are often used reduce the inflammation in the colon. This may help ease belly cramps and diarrhea. Examples of medications include steroids, antibiotics, or drugs that affect the body's immune system.

Hospital stay

If your child's symptoms are severe, he or she may need to stay in the hospital. This can help make sure your child is getting the nutrition he or she needs. It can also stop diarrhea and the loss of blood, fluids, and minerals. Your child may need a special diet, feeding through a vein or tube, or intravenous medicines. Some children may also need surgery.

Vitamins

Vitamins may help prevent some problems or help maintain a remission. Talk with your child's provider about any vitamin supplements. These treatments have risks and may cause harmful side effects.

Nutritional supplements

Your child's provider may suggest nutritional supplements or special high-calorie liquid formulas. These may be helpful if your child has delayed growth.

IV or intravenous feeding

In rare cases IV feeding may be used for children who need extra nutrition for a short time.

Surgery

Surgery may help Crohn's disease, but it can't cure it. Surgery may help to reduce long-term symptoms that don't get better with medicine. Surgery may also fix some problems. These include a blocked intestine, a hole or perforation, a sore or abscess, or bleeding. Types of surgery may include:

• Draining abscesses in or near fistulas. An abscess is a collection of pus or infection. Treatment includes antibiotics, but surgery may be needed.

• Bowel or intestinal resection. The diseased section of intestine is removed. This surgery shortens your child's intestines.

• Ostomy. When part of the intestines is removed, anew way of removing stool from the body is created. The surgery to create the new opening is called an ostomy.

What are the complications of Crohn's disease?

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

• May try to avoid eating, to prevent the pain that is linked to digestion

• May not want to eat if he or she can't have any 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. This is often recommended 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 bowel resection surgery, 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

Living 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

Diet changes

Many children with the disorder can eat a fairly normal diet when their disease is stable. Talk with your child's healthcare provider. When your child is having symptoms, it may be helpful to follow these suggestions:

• Eat smaller, frequent meals

• Limit foods with milk or milk products containing lactose, if there is a history of lactose intolerance

• Avoid greasy foods

• Avoid certain high-fiber foods such as popcorn, nuts, and seeds

• Avoid any foods that seem to have triggered your symptoms in the past

• Drink liquids at room temperature

• Drink liquids between meals, not with meals

• Avoid caffeine

• Avoid foods with sorbitol, xylitol, and mannitol

• Avoid sweets such as candy, cakes, and pies

Avoid foods that produce more gas, such as:

• Beans

• Peas

• Broccoli

• Onions

• Cauliflower

• Cabbage

Add foods that have more soluble fiber. This is fiber that absorbs water. Foods that are good sources of soluble fiber include:

• Bananas

• Rice

• Applesauce

• Tapioca

• Oatmeal

Children who have short bowel syndrome after surgery for Crohn's often have problems with diarrhea and malabsorption. Talk with your child's healthcare provider about how to treat this.

Children with short bowel syndrome often need help getting all the nutrition they need. Supplemental liquid feedings are sometimes done using TPN, or total parenteral nutrition. TPN is a special mix of glucose, protein, fat, vitamins, and minerals. It is given by IV or intravenously in the vein.

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

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

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

• It is a type of inflammatory bowel disease (IBD).

• 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.