Digestive and Gastrointestinal Conditions

Inflammatory Bowel Disease

What is inflammatory bowel disease (IBD)?

Inflammatory bowel disease (IBD) refers to several related illnesses that affect the digestive tract. In these cases, the digestive tract becomes swollen and red (inflamed) and the gut tissue can be broken or damaged.

Crohn’s disease and ulcerative colitis are two forms of IBD. Both are ongoing (chronic) diseases. They are alike in some ways, but they also have some important differences.

In Crohn’s disease, all layers of the digestive tract can become inflamed and get sores, or ulcers. Crohn’s disease can affect any part of the digestive tract from the mouth to the anus. Usually, it affects the end of the small intestine and the large intestine (colon). There can be healthy patches in between inflamed patches.

In ulcerative colitis, only the inner lining (mucosa) of the colon becomes inflamed and gets ulcers. Most of the time, ulcerative colitis affects the whole length of the colon. Some children have healthy patches of intestine between inflamed patches, but this might not be true for your child.

Children with IBD can have features of both Crohn’s disease and ulcerative colitis.

IBD sometimes affects other parts of the body, too, such as the joints, liver, eyes or skin.

Inflammatory Bowel Disease at Seattle Children’s

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

  • The program provides access to many IBD experts. We can schedule your visit so your child sees many of them in 1 place on the same day. We treat your 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 IBD 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 IBD need.

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

Inflammatory Bowel Disease in Children

Most people diagnosed with IBD are 10 to 40 years old. However, some children younger than 5 years old get IBD.

IBD tends to run in families. About 1 in 5 people with either Crohn’s disease or ulcerative colitis has a close relative with some form of IBD. But IBD is not only genetic. We know this because if 1 identical twin has IBD, there’s less than a 50% chance that the other twin will have it too — even though they have the exact same genetic makeup.

Doctors believe that IBD happens because something goes wrong between a child’s genetic makeup, their immune system and their microbiome. It’s not clear why this happens. Doctors are studying IBD to learn more about the causes.

Immune deficiencies can cause severe IBD in children younger than 5, even in babies.

Symptoms of Inflammatory Bowel Disease

  • The most common symptoms of IBD are:

    • Cramping pain in the belly
    • Ongoing diarrhea
    • Blood in stool (feces)
    • Weight loss

    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. This can sometimes make it hard for doctors to make a diagnosis.

  • IBD can lead to other health problems. These can include slowed growth, delayed puberty, weakened bones or lower bone density, anxiety, depression and emotional challenges. Read more about the complications of Crohn’s disease or ulcerative colitis.

Diagnosing Inflammatory Bowel Disease

Diagnosis always starts with a detailed health history. To diagnose inflammatory bowel disease, the IBD Center team will ask you 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.

  • Doctors use these lab tests to learn more about your child:

    • 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 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 IBD and it started before age 5, the IBD Center team might suggest testing for immune deficiencies. 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 can 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 the camera, doctors can look for swelling, redness, sores 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 1 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 Inflammatory Bowel Disease

For most children with IBD, treatment is a balance of medicines and nutritional support (see below). If these are not enough, or if your child has a serious complication, your child may need surgery.

The 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 are to:

    • Restore balance and health to your child’s body
    • Relieve any pain or other symptoms caused by IBD
    • 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

  • We start treatment for IBD with medicines and nutritional support. Medicines are mainly aimed at calming the immune system, which is too reactive, and reducing inflammation.

    We try to avoid using corticosteroids (medicines that suppress the immune system) because they can cause long-lasting side effects if used again and again.

    Several other medicines can help. They include a newer medicine called natalizumab. It limits the movement of overactive immune cells. It’s used in adults with Crohn’s disease and is available for children through the IBD Center.

  • 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 IBD 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).

    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.

    Nutritional therapies

    There’s mounting evidence that certain nutritional therapies can reduce inflammation in Crohn’s disease. 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.

  • A balanced diet can help manage your child’s IBD symptoms. Dr. David Suskind explains how each child’s nutritional needs — and “problem foods” — are unique. Creating a diet that works for your child plays an important role in treatment.

  • 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 because of IBD. This can block the intestine.
    • Crohn’s disease affects the area around their anus. This can cause pain, infections and pockets of pus (abscesses).

    Surgery is very different for Crohn’s disease and for ulcerative colitis.

    For Crohn’s disease, surgeons repair or remove the affected part of the intestine and preserve as much of the healthy intestine as possible. Surgeons use many techniques to do this.

    For ulcerative colitis, surgeons remove the entire large intestine (colon) and the lining of the rectum (or, rarely, the whole rectum). In most cases, they create a pouch inside the body from the end of the small intestine (ileum) to the anus. (This bypasses the large intestine.) Then they connect the small intestine to an outside opening made in the skin of the belly so waste can pass to a bag. This bag (an ileostomy bag) is attached on the outside. Later, when the inside pouch can take over, surgeons close the ileostomy. Rarely, a child’s digestive tract is not healthy enough to make a pouch inside that works; in this case, the child keeps the ileostomy.

    Our surgeons are highly experienced at operations for both Crohn’s disease and ulcerative colitis. They are skilled in both laparoscopic surgery, or minimally invasive techniques, and in open methods (using a larger cut). Your child’s surgeon will help you decide which technique is best for your child.

Research and Advances

Seattle Children’s offers innovative therapies that are not offered everywhere. These include the Specific Carbohydrate Diet (SCD), research studies for fecal microbiota transplant therapy (also known as stool transplant or feces transplant) for Crohn’s disease and 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 your child 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.