Crohn’s disease is a lifelong condition that poses unique challenges for children, but with current medical therapies and thorough care, your child can lead a healthy, productive life.
One of two main types of inflammatory bowel diseases (IBD), Crohn’s causes swelling in the lining of the digestive tract, mainly in the small intestine and colon. This can lead to severe diarrhea, abdominal pain, weight loss, malnutrition, and fatigue. In children, these problems can weaken bones, stunt growth, and delay puberty.
An estimated 80,000 children in the United States suffer from IBD, about half of whom have Crohn’s, says Dinesh Pashankar, MD, director of Yale Medicine’s Pediatric Inflammatory Bowel Disease Program, which offers specialized treatment for children with Crohn’s disease. The team includes doctors, surgeons, nurses, a social worker and a dietitian, all skilled at treating children with IBD. “We explain to kids—and their parents—what they can expect and meet all of their needs, especially addressing nutrition, growth and psychosocial issues,” Dr. Pashankar says.
What is Crohn’s disease?
Crohn’s disease is a chronic, inflammatory disease of the intestines. It most often affects the end of the small bowel, or ileum, as well as the beginning of the colon. However, it can also affect other portions of the gastrointestinal (GI) tract. The other primary IBD, ulcerative colitis, is found in the large intestine, or colon.
What are the symptoms of Crohn’s disease?
Because Crohn’s disease can affect any part of the gastrointestinal tract, symptoms may vary, but the most common include:
- Persistent diarrhea
- Rectal bleeding
- Abdominal pain
Other associated symptoms include:
- Loss of appetite
- Weight loss
- Growth failure
- Delayed sexual development
- Perianal disease, which can include abscesses near the anus
Crohn’s can affect a child’s growth in several different ways. First, any active and severe disease can delay growth, especially in a young child. The chronic diarrhea Crohn’s often causes can lead to weight loss. Because the disease affects the small intestine, essential nutrients may not be properly absorbed. Finally, children with abdominal pain, cramping, and diarrhea don’t feel well and often don’t eat much; many lack adequate nutrition.
Since Crohn’s is a chronic disease, your child might have periods when it flares up and symptoms appear or increase in severity. A flare might be followed by a remission, during which there are no symptoms at all.
What are the risk factors for Crohn’s disease?
Most people are diagnosed with Crohn’s in their teenage years or in their 20s, but it can arise at any age. Girls and boys are equally affected. There is no known cause of IBD, but family history increases the risk a child will develop Crohn’s or ulcerative colitis. The disease can occur in all ethnic groups, but whites and people of Eastern European (Ashkenazi) Jewish descent are at highest risk.
Risk factors include:
- Family history: Studies have shown as many as 5 to 20 percent of affected individuals have a close relative (parent, sibling or child) with the disease.
- Environment: Crohn’s is more common in urban, industrialized areas than it is in undeveloped countries. This suggests that a high-fat and refined-food diet may play a role. It is also more common in northern climates.
- Nonsteroidal anti-inflammatory medications: Medications including ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve, Anaprox), diclofenac sodium (Voltaren, Solaraze), and others don’t cause Crohn's disease, but they can inflame the bowel and worsen symptoms.
How is Crohn’s disease diagnosed?
There is no single test to diagnose Crohn’s disease, so your child’s doctor will first rule out other likely causes of symptoms. In addition to a standard physical exam and discussion of symptoms and family history, a combination of tests and procedures will be used to confirm a diagnosis. Those may include laboratory tests of blood and stool.
Other procedures include:
- Colonoscopy: Thedoctor uses a small camera mounted to the end of a lighted tube to examine the interior of the colon. This is done when your child is asleep under general anesthesia.
- Upper endoscopy: The physician inserts a tube through the mouth and runs it down the esophagus into the stomach and to the first part of the small intestine, or duodenum. This is done when your child is asleep under general anesthesia.
- Capsule endoscopy: The patient swallows a capsule that has a camera in it. The capsule travels through the small intestine, taking pictures that are transmitted to a receiver belt. The camera is expelled through a bowel movement and does not need to be retrieved.
- Imaging: The patient drinks a contrast dye and has an X-ray, Computed Tomography (CT) Enterography (imaging of the small intestine) or Magnetic Resonance Imaging (MRI) Enterography.
How is Crohn’s disease treated?
Yale Medicine doctors use medications, changes in diet and nutrition, and surgery to treat Crohn’s disease.
Medications: Your child’s doctor will help you decide which treatment best fits your child’s needs. Options include:
- Steroids and immunosuppressants can slow the disease’s progression, allowing the intestinal tissues to heal and decreasing flare ups of symptoms.
- Immunomodulatory treatment, which helps reduce inflammation by controlling and weakening the immune system, can be helpful in combination with a biologic, an immunosuppressive medication that blocks proteins that contribute to inflammation.
- Biologic medications to block the body’s inflammation response can be given by infusion therapy. For example, a medication called infliximab works by binds to and prevents the activity of a specific protein produced by the body that is known to create inflammation.
“These medications are given by IV. Kids can sit for two hours and do homework or watch TV. It’s a very child-friendly hospital and they come every few weeks, sometimes for six weeks or sometimes for eight,” says Dr. Pashankar.
Nutrition: Specific foods do not cause Crohn’s disease, but eating right may help reduce symptoms. Good nutrition is especially important because the disease often reduces the appetite while simultaneously increasing the body’s need for energy. Symptoms like diarrhea affect the ability to absorb key proteins, minerals, water, vitamins, fats, and carbohydrates.
Surgery: A bowel resection may be necessary to remove a disease portion of the bowel. After removing the section, surgeons join together the two ends of the healthy bowel. This may be necessary if your child develops a hole or crack in the wall of the digestive tract, or an intestinal blockage, or if medications no longer control symptoms.
Innovative treatments have made life better for children with Crohn’s disease, Dr. Pashankar says. “With newer medications, we send very few children to surgery and they enjoy longer remission rates,” he says, adding that the toll of managing symptoms can be especially taxing for children. “It’s hard enough to be a healthy kid, on top of these unpleasant symptoms and tests. But we work hard to put children at ease.”
What makes Yale Medicine’s approach to treating Crohn’s disease stand out?
Our Pediatric Inflammatory Bowel Disease Program team is focused on meeting the complex needs of treating children with Crohn’s disease. Our team includes IBD specialists, surgeons, and other medical providers trained specifically in treating children with these difficult diseases. It’s a joint program with Yale New Haven Children’s Hospital, where the team meets every week to discuss individual patients.
We provide lots of practical, emotional, and physical support for families coping with this challenging condition. Our nurse coordinator works closely with you throughout your child’s treatment. Our nutritionist discusses appropriate food and diet choices, while a social worker works with your child and family members to cope with any stress or psychosocial issues that may arise at school or work.
We have a smooth transition plan for patients who are 21 and are ready to move into our IBD program for adults. “We are proud that our remission rates in patients are higher than the national average,” Dr. Pashankar.