Pediatric Inflammatory Bowel Disease Program

Our approach to care

You and your family play a key role on “Your IBD team.”

Your IBD team may include nutritionists, pediatric surgeons, social workers, stoma therapists, ophthalmologists, dermatologists, and psychiatrists or psychologists when necessary.

Education about IBD is very important in achieving the best outcomes. All new patients meet along with the family for a private teaching session about IBD. We will offer additional educational experiences on websites we have verified as credible. We encourage you and your child to ask questions and actively participate in all decisions affecting you or your child's care.

Research and new knowledge result in improvements in patient care and we offer our patients the opportunity, if they choose, to be part of studies that will lead to better care of children with IBD. Our IBD program is one of the largest contributors to the Improve Care Now IBD Registry.

Communication and accessibility are important to us. You can contact us directly at 1-877-PEDI-IBD (1-877-733-4423) to leave a message for us.

The Parent/Patient Advisory Team (PPAT) is a group of parent and patient volunteers dedicated to working in partnership with the Mass General Brigham for Children IBD Center physicians and care team. The mission of PPAT is to help improve care and outcomes for children and adolescents receiving treatment for inflammatory bowel diseases (IBD).

A diagnosis of IBD can be overwhelming and confusing. We understand how this disease impacts patients and families because we live it every day. Our goal is to help empower, support, and educate patients and families along their IBD journey. This is accomplished through ongoing educational programs organized throughout the year. In addition, we are committed to creating a supportive community through social programming and mentoring.

IBD can be a very isolating disease and our philosophy is that no one should worry alone. We are a group who understands the stress, worry, and challenges that IBD can cause, but we also know that patients can thrive and live happy and fulfilling lives.

Crohn’s disease

Crohn’s disease is diagnosed more frequently in young adults than in children, but children can develop Crohn’s. Crohn’s disease is a form of inflammatory bowel disease (IBD) that can affect different parts of the gastrointestinal tract from the mouth to the anus. The most common part of the digestive tract to become inflamed is the lower part of the small bowel, called the ileum. Other common areas include the esophagus, stomach, duodenum, appendix, and colon.

Crohn’s disease does not have to affect the entire gastrointestinal tract (and rarely does). It can “skip” areas (normal areas between two inflamed areas). The inflammation goes deep into the tissues of the digestive tract and alters the entire thickness of the intestinal walls.

The common types of Crohn's disease in children include:

• Ileitis: Ileitis is when there is Crohn’s disease just in the end of the small intestine.
• Colitis: Colitis is when there is inflammation in just the large intestine. It is the medical word for inflammation in the colon and can either describe Crohn’s colitis (Crohn’s disease of the colon) or ulcerative colitis (another form of IBD).
• Ileocolitis: Ileocolitis is when there is Crohn’s disease in parts of both the large intestine (colon) and small intestine.

Crohn’s disease can also affect the upper part of the gastrointestinal tract such as the stomach or the esophagus (the tube that connects the mouth to the stomach).

The symptoms of Crohn’s disease vary based on the location and extent of the inflammation in the GI tract. Patients with relatively minor inflammation will experience milder symptoms, while patients with extensive inflammation will have more severe symptoms. Some patients will have flare-ups more frequently than others, who may go into remission for longer periods of time.

Crohn’s disease can also affect the upper part of the gastrointestinal tract such as the stomach or the esophagus (the tube that connects the throat to the stomach).

Symptoms of active Crohn’s disease include:

• Fevers
• Diarrhea
• Abdominal pain
• Weight loss
• Weakness
• Blood in stools
• Rectal bleeding
• Joint pain
• Skin rashes

Some children with Crohn’s disease have scarring or narrowing in their intestines. This is called a stricture. Strictures can cause abdominal pain and vomiting, and can lead to a blockage in the bowel. Some narrowed areas are caused by inflammation that gets better with medicine. Others can have scar tissue (fibrosis) that may need to be inflated with a balloon during a colonoscopy or, in some children, surgery.

Another possible complication seen in Crohn’s disease is a fistula. A fistula is a connection from one part of the intestine to another part of the body (like another part of intestine, bladder or skin). Fistulae may respond to anti-inflammatory medicines, but some may require surgery.

Sometimes a fistula can lead to a pocket of infection (called an abscess). Abscesses require antibiotics. They may also need to be drained by a radiologist with a tube or by surgery.

Ulcerative colitis

Proctitis
This type of ulcerative colitis is when the very end of the large intestine is inflamed.

Left-sided colitis
This type of ulcerative colitis is when one-third of the large intestine is inflamed.

Extensive colitis
This type of ulcerative colitis is when the inflammation stretches over half of the large intestine.

Pancolitis
This type of ulcerative colitis is when there is inflammation that involves the entire large intestine.

Symptoms of ulcerative colitis include:

• Diarrhea (sometimes with blood or pus)
• Abdominal and/or rectal pain
• Rectal bleeding
• Urgency to defecate
• Weight loss
• Fatigue
• Fever

Possible complications of ulcerative colitis include:

• Severe bleeding (may lead to iron deficiency anemia)
• A hole in the colon (perforated colon)
• Severe dehydration
• Liver disease (rare)
• Bone loss (osteoporosis)
• Inflammation of your skin, joints and eyes, and sores in the lining of your mouth
• An increased risk of colon cancer
• A rapidly swelling colon (toxic megacolon)
• Increased risk of blood clots in veins and arteries

Children with ulcerative colitis (and Crohn’s disease) often will have colonoscopies when their symptoms increase and your doctor is discussing changing the treatment.

In addition, people with colitis (either from ulcerative colitis or Crohn’s disease) have an increased risk of colon cancer over the course of their lifetime. It is recommended to start screening colonoscopies 7 to 8 years after the diagnosis of ulcerative colitis (or Crohn’s disease of the large intestine) and to have them at regular intervals. This test should be done even if your child is feeling well. Factors that increase the risk of colon cancer are a larger area of inflammation, how long the inflammation has been there and some liver problems associated with colitis.