Crohn’s Disease

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). Read about our clinical trials using SCD to treat Crohn’s disease and other forms of IBD.
• The medicines natalizumab, vedolizumab and ustekinumab
• 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.

Why Choose Us: Innovative Treatments (1:57)

• One of the early signs of remission is how much medicine is still in your child’s body after a certain amount of time. We will check your child’s medicine levels early so we can individualize the dose, and increase the likelihood of your child getting – and staying – in remission.
• The IBD team has lead research on the usefulness of early therapeutic monitoring to improve patient outcomes.

• We use ultrasound to monitor your child’s intestinal health. This means we can adjust your child’s care plan more frequently, and personalize their treatment in real time.
• Ultrasound is less invasive than endoscopy, and does not require advance preparation.
• Seattle Children’s is the only IBD Center in our region to use ultrasound monitoring to check patients’ response to treatment.

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.

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

• 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.

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).

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.

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. 

• Watch the video Treating Isolated Lower–Small Intestine Crohn’s (2:52). 

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