Digestive and Gastrointestinal Conditions

Crohn’s Disease

What is Crohn’s disease?

Crohn’s disease is swelling and redness (inflammation) in the wall of the digestive tract. Both the inner lining (mucosa) and the deeper layers of the wall become inflamed. Over time, this can damage the tissue and cause sores, or ulcers.

Crohn’s disease is an ongoing (chronic) condition. It is one of the most common forms of inflammatory bowel disease (IBD).

Doctors believe Crohn’s disease happens because something goes wrong between a child’s genetic makeup, their immune system and their microbiome. This causes the digestive tract to become inflamed. The immune system isn’t able to stop the process and restore the balance. Instead, the area stays inflamed, which leads to the common symptoms of Crohn’s disease.

It’s not clear why this happens. Doctors are studying Crohn’s disease to learn more about the causes.

Crohn’s disease can affect any part of the digestive tract from the mouth to the anus. Usually Crohn’s disease affects the far end of the small intestine and the large intestine (colon). There can be healthy patches in between inflamed patches.

Crohn’s Disease Care at Seattle Children’s

Seattle Children’s has a special IBD Center to care for children with this complex condition.

  • The center provides access to many IBD experts. We can schedule your visit so your child sees many of them in one place on the same day. We treat the whole child by combining care from specialists in digestive health, immune health, nutrition, surgery and psychology.

  • Seattle Children’s offers advanced treatments for children with Crohn’s disease that are not offered everywhere. These include:

    • The Specific Carbohydrate Diet (SCD)
    • The medicines natalizumab, vedolizumab and ustekinumab
    • Research studies for fecal microbiota transplant therapy (also known as stool transplant or feces transplant)
    • Stem cell transplant for children with severe Crohn’s disease when associated with specific genetic abnormalities
    • Surgery

    Our surgeons have the most experience in the region doing the highly technical surgeries that some children with Crohn’s disease need.

  • The IBD Center team also conducts research to devise better treatments and improve the quality of life for children with Crohn’s disease and other forms of IBD. We’re part of ImproveCareNow, a group of more than 80 centers working together to study and refine IBD care for children.

Crohn’s Disease in Children

Most people diagnosed with Crohn’s disease are 10 to 40 years old. But some children younger than 5 years old get it. Up to 20% of people with Crohn’s disease or ulcerative colitis (another form of IBD) are younger than age 18.

Crohn’s disease tends to run in families. About 1 in 5 people with this condition has a close relative with some form of IBD. But the link is not clear.

Immune deficiencies with specific genetic changes can cause severe Crohn’s disease in children younger than 5, even in babies.

Symptoms of Crohn’s Disease

  • The most common symptoms of Crohn’s disease are:

    • Cramping pain in the belly (abdomen)
    • Ongoing diarrhea

    This happens because the inflamed intestine cannot absorb water and nutrients like it should. Inflammation also makes the intestine empty itself often.

    The symptoms range from mild (mild pain, loose stools or gassy belly) to severe, where a child doubles over with pain, loses weight, passes stools more than 8 times a day and passes blood. Symptoms can vary over time. It’s normal for a child to go without symptoms for months or even years and then have symptoms reappear.

  • Crohn’s disease can lead to other health problems. The main complications doctors watch for include:

    • Dehydration, or loss of fluids, due to diarrhea.
    • Sores (ulcers) in the intestine, which can cause bleeding. When ulcers go all the way through and make holes in the intestinal wall, it is called perforation.
    • Anemia, or low level of red blood cells, due to internal bleeding from ulcers. Anemia can cause extreme tiredness.
    • An abnormal channel (fistula) that forms when a sore extends into another part of the intestine or into the bladder, vagina or skin. A fistula can get infected. This can cause a pocket of pus (abscess).
    • Pain, leakage or discharge from a fistula or abscess around the anus.
    • Tears (fissures) in the rectum or anus, which can bleed.
    • Short-term constipation or a completely blocked intestine due to swelling and scarring in the intestine.
    • Weight loss, slowed growth or delayed puberty due to trouble getting enough nutrients. Children with Crohn’s disease might have little appetite and eat less, and their intestines might not absorb nutrients well.
    • Toxic megacolon, in which the major part of the large intestine (colon) gets severely inflamed. Then the colon wall weakens and balloons out. This can rupture, or perforate, the colon.

  • Some people with Crohn’s disease get health problems that affect other parts of their bodies. These problems include:

    • Inflamed joints (arthritis)
    • Skin problems (erythema nodosum, pyoderma gangrenosum or psoriasis)
    • Inflamed eyes (uveitis)
    • Inflamed mouth
    • Kidney stones
    • Gallstones
    • Problems with the liver or bile ducts
    • Anxiety disorders
    • Depression
    • Rarely, blood clots

Diagnosing Crohn’s Disease

Diagnosis always starts with a detailed health history. To diagnose Crohn’s disease, the team in the Inflammatory Bowel Disease (IBD) Center will ask for a detailed history of your child’s illness. Your child’s doctors and other team members will examine your child.

Your child might also have tests, including lab work, body imaging (radiology) and endoscopy.

    • Blood tests. Blood tests check for anemia, which can be a sign of heavy internal bleeding in the gut, and high levels of white blood cells and platelets, which can be signs of inflammation. Blood protein levels can tell the team if your child isn’t eating enough protein, isn’t absorbing enough protein or is losing too much protein because of inflammation. Other tests look for substances in the blood that are signs of inflammation (C-reactive protein test, sedimentation rate).
    • Tests on a stool (feces) sample. The team uses these tests to look for blood or signs of infection. Certain stool tests can tell the team if your child has active inflammation.

    If your child has Crohn’s disease and it started before age 5, the IBD Center team might suggest testing for immune deficiencies and specific genetic changes. Immunologists at Seattle Children’s can do this testing.

  • Pictures that show the inside of your child’s belly or pelvic area can help the team learn more about your child’s condition. At Seattle Children’s, we try to use methods that use low or no radiation, such as ultrasound and MRI (magnetic resonance imaging).

    Some children might need an upper GI (PDF) (gastrointestinal) series of X-rays with a small bowel follow-through or a CT (computed tomography) scan.

  • 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 mouth or anus.

    The tube has a camera that’s connected to a computer and a TV monitor. Using this camera, doctors can look for swelling, redness, ulcers and bleeding. They can even take a tiny sample (biopsy) of the intestine for testing. This can help your child’s team diagnose IBD, figure out the type of IBD and tell how much of the intestine is affected.

    Your child might have one or more of these types of endoscopy (pronounced end-OSS-cope-ee):

    • Upper endoscopy. The doctor puts the endoscope through your child’s mouth to look at their stomach and the first part of their small intestine.
    • Sigmoidoscopy (pronounced sig-moid-OSS-cope-ee). The doctor puts the endoscope through your child’s anus to look at only their lower colon.
    • Colonoscopy (pronounced coal-un-OSS-cope-ee). The doctor puts the endoscope through your child’s anus to look at their whole colon.

    Before these procedures, we give your child medicine that makes them fall asleep (anesthesia). They will not feel any pain and will not move.

    Sometimes, doctors ask children to swallow a pill-like device that carries a tiny camera (capsule endoscopy). (The doctor might also place the capsule in your child’s digestive tract using an endoscope.) This device takes pictures of the intestine. It passes out of your child’s body in stool. Doctors view the pictures on a computer. This lets them see parts of the intestine they cannot see using a regular endoscope.

Treating Crohn’s Disease

Crohn’s disease is a lifelong condition. No treatment can cure it. However, many children can control their disease and symptoms with a balance of medicines and nutritional support (see below). When other treatments are not enough, some children need surgery.

The Inflammatory Bowel Disease (IBD) Center at Seattle Children’s brings a team of specialists together in one place to give your child and family the most complete care. The center combines care from experts in digestive health, immune health, nutrition, surgery and psychology. You and your child are active partners in making treatment choices.

  • At the IBD Center, our goals for treating your child’s Crohn’s disease are to:

    • Restore balance and health to your child’s body
    • Relieve any pain or other symptoms from Crohn’s disease
    • Decrease inflammation and heal ulcers in your child’s intestines
    • Make sure your child is getting good nutrition
    • Restore your child’s growth and development
    • Ensure your child builds the best bone density
    • Help your child and family with the mental, emotional and social effects of IBD

  • Your child might need medicines that:

    • Suppress their overactive immune system (corticosteroids). We try to avoid corticosteroids or use them as little as possible because they can cause long-lasting side effects if used again and again.
    • Block the immune reaction that worsens inflammation (immunomodulators, such as azathioprine or methotrexate).
    • Block certain substances that fuel the process of inflammation (TNF-alpha blocking agents, such as infliximab, adalimumab or certolizumab).
    • Limit the movement of overactive immune cells (natalizumab).
    • Control bacteria growth (antibiotics).

  • In this video, Dr. Ghassan Wahbeh, director of Seattle Children’s IBD Center, discusses the downsides of treatment with steroids.

  • Dr. Ghassan Wahbeh discusses three treatment strategies that avoid repeated use of steroids and promote healing.

  • The intestine’s job is to break down food so nutrients can be absorbed into the bloodstream. Inflammation from Crohn’s disease can make it hard for your child to get enough nutrients to grow and develop. Nutritional support can help correct any shortfalls. In times when inflammation is under control, nutritional support is still important to maintain a healthy and balanced diet.

    Nutritional support can mean changing what or how your child eats or using nutritional therapies (formulas or special diets).

    Eating changes

    The IBD Center team designs a complete nutrition plan for your child so they get enough calories and eat a range of foods, including fruits and vegetables. Certain choices can help reduce symptoms. Two keys are to:

    • Limit lactose (sugar in milk) and fructose (sugar in fruit), especially fructose that is not in its natural form, as in high-fructose corn syrup
    • Chew foods well, especially raw, crunchy foods

    Nutritional therapies

    There’s mounting evidence that certain nutritional therapies can reduce inflammation in Crohn’s disease. One is a diet made up of 100% formula. This can be formula with simple nutrients that don’t need to be broken down before they are absorbed (elemental formula) or formula with more complex nutrients (polymeric formula). Research shows these formulas can help some children with IBD.

    Other options, such as the Specific Carbohydrate Diet, exist. At this time, the options have different levels of evidence to support their effectiveness.

    At the IBD Center, we embrace nutritional therapies and help families decide whether this type of treatment is right for their child and how to use it. The center team can give you details and resources about the options. We work with you to decide the best ways to track your child’s progress and tell whether the therapy is working for them.

  • Treatment for IBD does not always require medicine or steroids. Dr. David Suskind discusses how formula-based nutrition therapy (exclusive enteral nutrition, or EEN) can bring remission without medication.

  • There may be rare times when your child needs to rest their bowel (intestine). This means eating either only certain foods or, in some cases, taking nothing by mouth. Resting the bowel gives it a chance to heal. Instead of eating by mouth, your child may be fed through:

    • A nasogastric (NG) tube, which goes through the nose into the stomach
    • Rarely, a gastrostomy tube, which goes directly into the stomach through an opening made in the wall of the belly
    • Very rarely, an IV (intravenous) line, which goes into a vein

  • Your child might need surgery if:

    • They have serious inflammation that doesn’t get better with medicines and nutritional support.
    • Their intestine gets very narrow or scarred. This can block the intestine.
    • They have some other complication, such as an abscess or fistula around their anus, which can cause pain and infections.

    Overall, about two-thirds to three-fourths of people with Crohn’s disease need surgery for the condition some time in life. We are hoping that newer treatments and a more effective treatment approach will reduce the need for surgery.

    Surgery does not cure Crohn’s disease, but it may help control problems linked with the disease. Surgeons remove sections of intestine where the disease is active. These are the sections that are causing symptoms. The goal is to remove problem areas while keeping as much of the healthy intestine as possible.

    There are many different operations for Crohn’s disease. Options for surgery include both laparoscopic (PDF) techniques and open methods (using a larger cut). The right surgery for your child depends on their condition and the specific area of the intestine that’s affected. Your child’s surgeon will discuss these options with you. Together, you can come up with a plan that best suits your child.

  • Your child may need other types of surgery to treat complications of Crohn’s disease. For example, they may need surgery to drain a pocket or pus (abscess) or repair an abnormal channel (fistula) that forms when a sore extends into another part of the intestine or into the bladder, vagina or skin. If the intestine is narrowed from scarring, your child may need surgery to make it wider (stricturoplasty).

    No matter the procedure, your child’s surgical team will explain the details, including:

    • 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
    • What kind of care your child will need at home after surgery

Research and Advances

Seattle Children’s offers innovative therapies that are not offered everywhere. These include research studies for fecal microbiota transplant therapy (also known as stool transplant or feces transplant) for Crohn’s disease, as well as stem cell transplant for children with severe Crohn’s disease when associated with specific genetic abnormalities. Talk to your child’s doctor to see if they may be eligible to participate in a study.

Contact Us

Call the IBD Center at 206-987-2521 to request an appointment, a second opinion or more information.