Inflammatory Bowel Disease

The causes of IBD are still unclear but likely include a combination of genetic and environmental factors with immune system dysfunction.

The first step in treating inflammatory bowel disease (IBD) is to figure out whether or not your child has Crohn’s disease, ulcerative colitis, or another type of IBD. To do that, a doctor will take a careful medical history and perform a physical exam. Some other tests might also be needed, such as:

• Blood tests. Providers may test your child’s blood to help diagnose IBD and to see how well treatment is working. Tests include those that measure hematocrit (the ratio of red blood cells to total blood cells), white blood cells, platelets, and C-reaction protein (a measure of inflammation).
• Stool sample. Your child’s doctor may ask you to provide a sample of their bowel movements to look for inflammation or infections.
• Endoscopy. An upper endoscopy looks inside the esophagus (food pipe), stomach, and the beginning of the small intestine. The doctor will pass a long, flexible tube with a light on the end through the mouth and esophagus and into the stomach and small intestine. As the doctor passes the tube, they look at these areas and may take small samples of tissues, which are called biopsies.
• Colonoscopy. This test also uses a thin, flexible tube with a light and camera lens at the end to examine the inside of the large intestine. As the doctor passes the tube through the rectum, they look at the areas of the intestine and also may take biopsies.
• Imaging studies. CT scans and MRI scans

While IBD is a lifelong condition, the goal is to keep it in remission for as long as possible so that your child experiences few to no symptoms. Your child’s care team may use a variety of treatment and maintenance approaches, such as:

Dietary changes

Dietary interventions are currently being studied to assess the best diet for improving inflammation. Avoiding certain foods, or following certain diets, in conjunction with medication, can help control symptoms. A dietician can design a balanced nutrition program for your child.

Medications

Your child’s doctor will likely prescribe one or more maintenance medications to treat IBD and prevent flares. There are three main classes of maintenance medications for IBD:

Aminosalicylates (5-ASAs): These are aspirin-like medications that decrease inflammation at the intestine wall itself. They are most often used in mild-to-moderate ulcerative colitis and occasionally in Crohn’s disease. Examples of 5-ASAs include mesalamine (Asacol, Rowasa, Pentasa, Colazal, Lialda, Apriso, and Delzicol), sulfasalazine, and balsalazide.

Immunomodulators: This is a type of medication used to treat Crohn’s disease and ulcerative colitis by decreasing immune system activity. The most commonly used immunomodulators are 6-mercaptopurine (6MP), azathioprine (Imuran), and methotrexate. Less commonly used immunomodulators include tacrolimus (Prograf) and cyclosporine (Noral, Sandimmune). These agents are typically used in patients who do not respond to other treatments. Your child’s doctor will check his or her lab work closely when starting these medications.

Biologics: These medications are used when IBD does not respond to other medications, when other medications cause side effects, or if your child has complications of Crohn’s or ulcerative colitis, such as refractory disease or fistulas. Biologics work by blocking inflammatory chemicals in the blood. They may also decrease the number of immune system cells in the body. Examples of this class of medications include Remicade, Humira, Cimzia, Simponi, Sterlara, and Entyvio. These medications are usually given as injections or infusions.

Your child’s doctor may also prescribe steroids. These medications are used to reduce inflammation during a flare and to relieve diarrhea, rectal bleeding, fever, and pain in both forms of IBD. They can also relieve systemic symptoms like joint pain and skin and eye lesions in some patients. Typically, these are used during a flare to quiet symptoms while finding the correct maintenance medication for your child. There are different types of steroids, including:

• intravenous steroids, which are given in the hospital
• oral steroids, such as prednisone, which tend to have more systemic effects
• topical steroids, which treat localized inflammation in the sigmoid colon, rectum, or anus by using an enema, foam, or suppository; these tend to have fewer side effects than oral/IV steroids

Antibiotics are sometimes used to treat infections, fistulas, and abscesses. They can also be used in conjunction with other medications for Crohn’s disease. The most commonly used antibiotics include metronidazole and ciprofloxacin.

Surgery

While doctors almost always start treatment for IBD with medication, sometimes a child may not respond — or may stop responding — to medications and be a good candidate for surgery. The decision to have surgery is a joint one, made between your child, your family, your child's gastroenterologist, and the surgeon.

In Crohn’s disease, a surgical procedure called a resection, which removes a section of the intestine, may be considered. However, it's important to remember that with Crohn's disease, surgery is rarely a cure, since inflammation may recur in other locations throughout the digestive tract. The purpose of surgery is to keep your child feeling well, to minimize the damage done to the intestine, or to remove a piece of the intestine that is extremely damaged so that medications can work more effectively.

A small percentage of children with ulcerative colitis who do not respond to medication may need surgery, which can dramatically improve quality of life and improve symptoms. This surgery, called a colectomy, removes some or all of the large intestine and modifies the small intestine to create a new rectum.

Children with VEO-IBD typically don’t respond well to standard therapy for IBD. For this reason, researchers are actively studying treatment options for these children. The following approaches have proven effective for some children with VEO-IBD:

Medication: Children with VEO-IBD who have a mutation in the NCF2 gene respond well to antibiotics. Those with mutations in the LRBA gene experience improved symptoms after using abatacept, a medication that interferes with T cells and is more commonly used to treat autoimmune diseases.

Surgery: In some infants and children with mutations in the interleukin 10 receptor (IL-10R), bone marrow or stem cell transplantations have proven to be curative therapy.

Children and teenagers with IBD have a wide variety of needs that may include various treatments, including medication management, diet modification, growth and development monitoring, surgical care, and psychological support. At Boston Children’s Hospital, we take a team approach to IBD. Because IBD affects more than just the digestive tract, your child’s care team will also include dietitians, social workers, psychologists, and nurse practitioners to help address all aspects of life with IBD.

While treating children and teens with IBD is an important part of our mission, we are also committed to researching the biological causes of Crohn's disease and ulcerative colitis. By closely studying these diseases, we are better able to provide our patients with the best understanding of IBD; and with the latest treatment approaches.

Patients who receive care at Boston Children’s have access to the latest clinical trials by a team of specialists at the forefront of discovery. Our investigators are also involved in pioneering research to discover the cause and a cure for VEO-IBD. The center’s director, Dr. Scott Snapper, is a founding member and principal investigator for the U.S. location of the VEO-IBD Consortium, a global network of pediatric gastroenterologists and scientists working to unravel the molecular basis for VEO-IBD and develop better treatments.