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Crohn Disease

What is Crohn disease?

In Crohn disease, the wall of the intestine becomes inflamed, which means it gets swollen and red. Both the lining and the deeper layers of the wall swell. This is a chronic, or ongoing, condition. It’s one of the illnesses considered part of inflammatory bowel disease (IBD).

Doctors aren’t sure what causes Crohn disease. But the immune system seems to play a role. They believe the immune system reacts to something in the intestine, perhaps even to normal bacteria that live there. Then the body sends white blood cells to fight what it sees as a threat. The white blood cells cause inflammation. For some reason, the immune system doesn’t switch off again and end its defense effort. Instead, the area stays inflamed. This causes the common symptoms felt by people with Crohn disease. Over time, the ongoing inflammation can cause sores (ulcers) and damage the intestines.

Crohn disease can affect any segment of the digestive tract. There may be healthy patches of intestine between inflamed patches. Usually Crohn disease affects the far end of the small intestine (ileum) and the large intestine (colon). Sometimes doctors call this condition by another name based on the parts that are inflamed. For example, they may call it ileocolitis (pronounced ill-ee-oh-coal-ITE-is) if the ileum and colon are inflamed.

Who gets Crohn disease?

Most people diagnosed with Crohn disease get it between the ages of 15 and 35. But it can also develop in younger or older people. About 10% of people with Crohn disease are under age 18.

Crohn disease tends to run in families. About 20% of people with this condition have a close relative with some form of IBD. But the link is not completely clear.

What are the symptoms?

The most common symptoms are crampy pain in the belly and ongoing diarrhea. This happens because inflammation makes the intestine empty itself often. The symptoms range from mild to severe. They can vary over time. It’s normal for people with Crohn disease to have periods without any symptoms (remission), sometimes for months or years, and then to get symptoms again (recurrence).

Crohn disease can lead to other health problems, which cause symptoms, too. These are the main complications that doctors watch for:

  • Dehydration, or loss of fluids, due to diarrhea.
  • Ulcers in the colon (where waste collects before passing out through the anus). Ulcers may bleed and may go all the way through the intestinal wall. This is called perforation.
  • Anemia, or low level of red blood cells, due to ongoing bleeding from ulcers. Anemia can cause extreme tiredness (fatigue).
  • An abnormal channel (fistula) that develops when an ulcer pierces the intestine and extends into another segment of intestine or into the bladder, vagina or skin. A fistula may get infected.
  • Tears, or fissures, in the rectum or anus, which may bleed.
  • Pockets of pus, or abscesses, from infection.
  • Blocked intestine because swelling and scarring narrow the passageway. This narrowing, or stricture, may cause short-term constipation or complete blockage, also called obstruction.
  • Weight loss and, in children, slowed growth or delayed puberty because of trouble getting enough nutrients. Because children with Crohn disease may have less appetite, they may eat less. Also, their intestines may not absorb nutrients well.
  • Toxic megacolon, in which the colon gets severely inflamed; the colon wall then weakens and balloons out. This can rupture, or perforate, the colon.

Some people with Crohn disease also develop health problems that affect other parts of their bodies, such as arthritis, skin problems, eye and mouth inflammation, kidney stones, gallstones and liver problems.

The common symptoms and some complications of Crohn disease are much like other forms of IBD, like ulcerative colitis. So it can take time for doctors to make a diagnosis, because it is often hard to tell whether a child has Crohn disease, ulcerative colitis, or some other intestinal problem.

How do you diagnose Crohn disease?

The doctor will ask for a detailed history of your child’s illness and will examine your child.

Tests

Several tests can help doctors diagnose Crohn disease, so the doctor may order these:

  • Blood tests to check for anemia, which is a sign of bleeding, and to look for a high level of white blood cells, which is a sign of inflammation
  • Tests on a stool (feces) sample to look for blood or signs of infection
  • X-rays, including sets of X-rays called an upper GI (PDF 48KB) (short for gastrointestinal) series and a lower GI (PDF 44KB) series (also called a barium enema). Before having either of these X-rays, your child will drink a liquid or have a liquid put in their colon (enema) that shows up on X-ray film.
  • CT scan (short for “computed tomography scan” and sometimes said “cat scan”), which is another way to see inside the belly (abdomen)

Looking inside

One of the best ways to tell what’s happening in your child’s intestine is for the doctor to look at it. Doctors do this by inserting a thin, flexible, lighted tube (endoscope) through your child’s anus. The tube has a camera that’s connected to a computer and a TV monitor. Using this camera, the doctor can look for inflammation, ulcers, and bleeding, and can even take a tiny sample, or biopsy, of the intestine for testing. When doctors look at only the lower colon, this procedure is called sigmoidoscopy (pronounced sig-moid-OSS-cope-ee). When they look at the whole colon, it’s called colonoscopy (pronounced coal-un-OSS-cope-ee). Sometimes the doctors will also do this procedure to look at the stomach and the first part of the small intestine, called the duodenum.

What is your experience with Crohn disease at Children’s?

We have treated many children with Crohn disease at Children’s and have the most experience in the Pacific Northwest. Our gastroenterologists follow over 600 children with Crohn disease. Many patients can control their disease and symptoms with medicines and careful choices about what they eat and drink. An important part of our service is to work with children and families to get good results without surgery whenever possible.

Some children do need surgery because medicines and watching what they eat and drink are not enough. Our surgeons are experienced at performing the operations these children need to improve their health and quality of life. We perform 10 to 20 operations each year to treat Crohn disease. The options for surgery include both open and laparoscopic (PDF 36KB) techniques. Your surgeon will help you decide which technique is best for your child.

When you come to Children’s, you have a team of people to care for your child before, during and after surgery. Along with your child’s surgeon, you are connected with nurses, dietitians, child life specialists, social workers and others. We work together to meet all of your child’s health needs and help your family through this experience.

Since 1907, Children’s has been treating children only. Our team members are trained in their fields and also in meeting the unique needs of children. For example, the doctors who give your child anesthesia are board certified in pediatric anesthesiology. This means they have extra years of training in how to take care of kids. Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age. Our expertise in pediatrics truly makes a difference for our patients and families.

How do you treat Crohn disease?

The goals of treatment are to decrease inflammation in your child’s intestine and help it heal, get rid of your child’s symptoms and ensure your child is getting good nutrition. We start by using several types of medicines and nutritional support. If these are not enough or if your child develops a serious complication, they may need surgery. There is no treatment that cures Crohn disease. It is a life-long condition.

Medicines

Your child may need these types of medicines:

  • Medicines to decrease inflammation (aminosalicylates)
  • Medicines to suppress the immune system (corticosteroids)
  • Medicines to block the immune reaction that worsens inflammation (immunomodulators or immune system suppressors)
  • An antibody that blocks immune system chemicals that increase inflammation (infliximab)
  • Medicines to control bacteria growth (antibiotics)
  • Medicines to control diarrhea

Nutrition

If Crohn disease is making it hard for your child to get enough nutrients, the doctor may suggest:

  • Ensuring your child eats a variety of foods from all food groups
  • Taking certain supplements to boost nutrients
  • Avoiding foods that cause symptoms to flare up (such as spicy or high-fiber foods)
  • Giving your child a special liquid formula that’s high in calories

There may be times when your child needs bowel rest. This means eating either only certain foods or, in some cases, nothing at all by mouth. Resting the bowel, or intestine, gives it a chance to heal. Instead of eating by mouth, your child may be fed through an IV (short for intravenous) line, which goes into a vein; through a nasogastric (NG) tube, which goes through the nose into the stomach; or through a gastrostomy, an opening made in the wall of the abdomen that holds a tube or button so formula can be put directly into the stomach.

Surgery

Your child may need surgery if medicines and changes in what they eat and drink don’t control symptoms well enough. Surgery may also be needed if your child develops a serious complication, such as severe bleeding, severe blockage, large or multiple fistulas, perforation or toxic megacolon. Overall, about two-thirds to three-fourths of people with Crohn disease need surgery for it some time in life.

Surgery does not cure Crohn disease, but it may help control problems linked with the disease. Surgeons remove only those sections of bowel where the disease is active — the sections that are causing symptoms. The goal is to remove problem areas but also preserve as much of the intestine as possible. There are many different operations that may be done, depending on your child’s condition and the specific area of the bowel that’s affected. Your surgeon will discuss these options with you so that together you can come up with a plan that best suits your child.

Your child may need some other type of surgery for a complication of Crohn disease. For example, your child may need surgery to drain an abscess or repair a fissure. If the intestine is narrowed from scarring, your child may need surgery to make a cut along the narrow part to make it wider (stricturoplasty).

Before surgery, the surgical team can explain details like what will happen before, during and after your child’s operation; how long it’s likely to take; how long your child may need to stay in the hospital afterward; and what kind of care your child will need at home.

Resources

Read more about what to expect when your child visits a clinic at Children's, has surgery here or needs to stay in the hospital. You can get practical details about topics like what to do and bring the day of surgery and who will be on your child's care team. You can also take a virtual tour of our surgery rooms and other parts of the hospital.

To learn more about this condition, you may want to visit our resource list.