(opens in new tab)
Skip to main content
boy high five with doctor

Complex IBD Program

Our program provides expert, team‑based care for children, teens, and young adults with Crohn’s disease, ulcerative colitis, and complex IBD—bringing medical, surgical, and supportive specialists together.

Coordinated care that simplifies complex IBD

Our program brings medical, surgical, and supportive specialists together so your child receives coordinated care with fewer appointments and a clear plan forward.

Specialists together, fewer appointments

Your child sees multiple specialists in one visit, reducing appointments and creating a clear, coordinated care plan.

Care tailored to your child

Personalized treatment plans are built around your child’s diagnosis, needs, and goals.

Expert care for today and tomorrow

Medical and surgical teams work side by side to support your child’s health and quality of life over time.

Slide 1 of 3
Ongoing support

Care that grows

We care for children from birth through age 23, supporting them through every stage of growth—including school, college, trade programs, and missionary service. As your child grows, our team continues to coordinate care and helps families plan a smooth transition into adult care when the time is right.

two boys jumping over puddles

Conditions we treat

We treat a broad range of conditions in our IBD program. Our care is individualized because every child is unique.

Pediatric Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes ongoing inflammation in the digestive tract. Crohn’s disease can affect any part of the digestive system, from the mouth to the anus, but it commonly affects the end of the small intestine and the beginning of the large intestine.

Inflammation from Crohn’s disease can make it harder for your child to absorb nutrients, grow normally and feel well day to day. Some children also develop narrowing, infections or abnormal connections in the intestine.

Symptoms

Symptoms of pediatric Crohn’s disease vary depending on where inflammation occurs and how severe it is. Your child may experience:

  • Ongoing diarrhea
  • Belly pain or cramping
  • Blood in the stool
  • Poor appetite
  • Weight loss or difficulty gaining weight
  • Fatigue
  • Slowed growth or delayed puberty
  • Mouth sores
  • Pain, swelling or drainage around the anus

Some children also develop symptoms outside the digestive system, including joint pain, skin problems or eye inflammation.

How we evaluate your child

We start by learning about your child’s symptoms, growth, medical history and family history. Blood and stool tests can help us look for inflammation, anemia and other signs of IBD.

Your child may also need imaging or pediatric endoscopy, which uses a small, flexible camera to examine the digestive tract. A pediatric colonoscopy allows us to look closely at the colon and end of the small intestine and take tiny tissue samples, called biopsies, to look for inflammation.

Treatments

Treatment focuses on reducing inflammation, relieving symptoms and helping your child grow and participate fully in everyday life. Our goal is to help your child reach and maintain remission, a period when the disease is well controlled with few or no symptoms.

Treatment may include:

  • Medications to reduce inflammation or control the immune system
  • Biologic medications that target specific parts of the inflammatory process
  • Nutrition therapy
  • Vitamin or mineral supplements
  • Ongoing blood, stool and imaging tests
  • Pediatric endoscopy or colonoscopy to monitor healing

For children with complex inflammatory bowel disease or complications from Crohn’s disease, our medical and surgical teams work together to determine whether additional treatments or surgery may help.

Familial adenomatous polyposis (FAP) is an inherited condition that causes many growths called polyps to develop in the colon and rectum, often beginning during childhood or adolescence. Most polyps are not cancerous when they first develop, but people with FAP have a very high risk of developing colorectal cancer if the condition is not treated.

FAP is not a type of inflammatory bowel disease, but children with FAP benefit from specialized gastrointestinal and surgical care to monitor the colon and reduce future cancer risk.

FAP is usually caused by a change in a gene called APC, which normally helps control how cells grow. The genetic change can be passed from a parent to a child, although sometimes it occurs for the first time in a child.

Because FAP can run in families, genetic testing and counseling may be recommended for your child and other family members.

Symptoms

Children with FAP may not have symptoms when polyps first begin developing. As the number or size of polyps increases, symptoms may include:

  • Blood in the stool
  • Changes in bowel movements
  • Diarrhea or constipation
  • Belly pain
  • Unexplained anemia, or a low number of healthy red blood cells

Regular screening is important even when a child feels well.

How we evaluate your child

Children who have FAP or are at risk because of their family history may need genetic testing and regular pediatric colonoscopy. During a colonoscopy, your child’s doctor can examine the colon for polyps and take tissue samples when needed.

Treatments

Surgical management of FAP may include a colectomy, which is surgery to remove the colon, followed by an ileal pouch-anal anastomosis (IPAA). During IPAA, surgeons use the end of the small intestine, called the ileum, to create an internal J-shaped pouch and connect it to the anus. The J-pouch stores stool and allows children to continue having bowel movements through the anus.

Our gastroenterology, genetics and surgical teams work together to determine the appropriate timing of screening and treatment for your child.

Indeterminate colitis is an inflammatory bowel disease that has features of both Crohn’s disease and ulcerative colitis, making it difficult to clearly classify as one or the other. In some children, the diagnosis becomes clearer over time as we learn more about how their disease behaves.

Symptoms

Symptoms can be similar to Crohn’s disease or ulcerative colitis and may include:

  • Persistent diarrhea
  • Blood or mucus in the stool
  • Belly pain or cramping
  • Frequent or urgent bowel movements
  • Fatigue
  • Poor appetite
  • Weight loss or difficulty gaining weight
  • Slowed growth

How we evaluate your child

Diagnosing indeterminate colitis involves looking at your child’s symptoms along with blood and stool tests, imaging and findings from pediatric endoscopy and pediatric colonoscopy.

Because IBD can change over time, we continue to monitor your child and may repeat certain tests to better understand their disease.

Treatments

Treatment depends on where inflammation occurs, how severe it is and how your child responds to therapy. Options may include medications to reduce inflammation or control the immune system, biologic medications and nutrition support.

We continue to evaluate your child over time and adjust treatment as we learn more about how their IBD behaves.

A perianal abscess is a pocket of infection that develops near the anus. A perianal fistula is an abnormal tunnel that forms between the intestine or anal canal and the skin near the anus. Both can occur in children with Crohn’s disease and may be signs of more complex disease.

Symptoms

Symptoms of a perianal abscess or fistula may include:

  • Pain or tenderness near the anus
  • Swelling or a lump near the anus
  • Redness
  • Drainage of pus, blood or other fluid
  • Fever
  • Pain with bowel movements
  • An opening or sore that does not heal

How we evaluate your child

Our team will examine the area and may use imaging to understand the location and extent of an abscess or fistula. If your child has signs of an abscess or a fistula, we may recommend an exam under anesthesia. During this exam, your child is asleep and comfortable while a surgeon takes a closer look to find the exact location and extent of an abscess or fistula. In many cases, the surgeon can also treat the problem during this same exam.

Because these complications can be related to Crohn’s disease activity elsewhere in the digestive tract, we may also recommend blood and stool tests, imaging or pediatric endoscopy to evaluate your child’s IBD.

Treatments

Treatment focuses on controlling infection, promoting healing and treating the underlying Crohn’s disease.

Depending on your child’s needs, treatment may include:

  • Antibiotics
  • Medications to control Crohn’s disease
  • Drainage of an abscess
  • Procedures to help a fistula drain and heal
  • Surgery when needed

Our gastroenterology and surgical specialists work together to coordinate treatment and reduce the risk of future complications.

Pouchitis is inflammation of the internal pouch, or J-pouch, created during IPAA surgery. Pouchitis can develop after surgery for ulcerative colitis and can affect how often your child has bowel movements and how well they feel.

Symptoms

Symptoms of pouchitis may include:

  • More frequent bowel movements
  • Urgent bowel movements
  • Loose or watery stools
  • Belly or pelvic cramping
  • Blood in the stool
  • Fever
  • Fatigue
  • Difficulty controlling bowel movements

How we evaluate your child

Because several conditions can cause changes in bowel function after J-pouch surgery, we first work to determine whether inflammation is responsible for your child’s symptoms.

Testing may include blood or stool tests and a pouchoscopy, a procedure that uses a small camera to look inside the J-pouch and check for inflammation.

Treatments

Pouchitis treatment depends on your child’s symptoms, how severe the inflammation is and whether pouchitis has occurred before. Treatment may include antibiotics and other medications to control inflammation.

For children who experience repeated or persistent pouchitis, our team may recommend additional testing or treatment to understand why inflammation continues and protect long-term pouch health.

Pediatric ulcerative colitis is a type of inflammatory bowel disease that causes ongoing inflammation and sores in the inner lining of the colon and rectum. The inflammation typically begins in the rectum and can extend through part or all of the colon.

Symptoms

Symptoms of pediatric ulcerative colitis can range from mild to severe and may include:

  • Bloody diarrhea
  • Frequent or urgent bowel movements
  • Belly pain or cramping
  • Mucus in the stool
  • Fatigue
  • Poor appetite
  • Weight loss
  • Slowed growth

Symptoms may come and go. Periods when symptoms become more active are called flares, while periods when the disease is well controlled are called remission.

How we evaluate your child

Blood and stool tests can help us look for inflammation, anemia and other signs of ulcerative colitis. Your child may also need imaging or pediatric endoscopy.

A pediatric colonoscopy allows us to examine the inside of the colon and take small tissue samples, called biopsies, to look for inflammation and confirm the diagnosis.

Treatments

Treatment focuses on controlling inflammation, relieving symptoms and helping your child reach and maintain remission.

Treatment may include:

  • Anti-inflammatory medications
  • Medications that control the immune system
  • Biologic medications
  • Nutrition support
  • Ongoing blood and stool testing
  • Pediatric endoscopy or colonoscopy to monitor disease

If severe ulcerative colitis does not respond to medication, surgery may be an option. Our gastroenterology and surgical specialists work together to help families understand their treatment choices.

Very early onset inflammatory bowel disease (VEO-IBD) is IBD that develops in children younger than 6 years old. When inflammatory bowel disease begins this early, genetic or immune system differences may sometimes contribute to the inflammation.

Symptoms

Children with very early onset IBD may experience:

  • Persistent diarrhea
  • Blood or mucus in the stool
  • Belly pain
  • Poor weight gain or growth
  • Frequent fevers
  • Recurrent infections
  • Severe irritation or sores around the anus

How we evaluate your child

Children with very early onset IBD may need additional testing beyond the typical evaluation for Crohn’s disease or ulcerative colitis.

Along with blood and stool tests, imaging and pediatric endoscopy, we may recommend genetic or immune system testing to look for an underlying condition that could be contributing to the inflammation.

Treatments

Treatment is personalized based on your child’s age, type and severity of inflammation and whether an underlying genetic or immune condition is identified.

Treatment may include nutrition therapy, medications that control inflammation or the immune system and more targeted treatments when a specific cause is identified. Because VEO-IBD can be complex, gastroenterology, immunology, genetics and other pediatric specialists may work together to coordinate your child’s care.

Children playing with wooden blocks in classroom

Services

We provide a variety of services, including:

  • Intestinal ultrasound

  • Endoscopy, colonoscopy, and ileoscopy

  • Capsule endoscopy

  • Colostomy and ileostomy

  • Ileal pouch–anal anastomosis

  • Abscess incision and drainage

  • Ileocecectomy

  • Bowel management

  • Pelvic floor rehabilitation and physical therapy

Patient resources

Colorectal conditions are difficult for both the child and family. Learn more about some of the resources available to families with colorectal conditions.

Colorectal Center Family Support Group: A private Facebook group for patients and parents to discuss issues related to anorectal malformations, Hirschsprung’s Disease, and severe idiopathic constipation.

Utah Parent Center: A training and information center founded by parents of children and youth with all disabilities to help other parents facing similar challenges throughout Utah. The staff has built collaborative networks with education, health and human service professionals, agencies and organizations. 

Medical Home Portal: A unique source of reliable information about children and youth with special health care needs (CYSHCN), offering a “one-stop shop” for their: Families, Physicians, and Medical Home teams. 

Pull Through Network: A forum of exchange of information among parents with common concerns in colorectal problems.

Hirschsprung’s and Motility Disorders Support Network: An online network of people and families with children who suffer from Hirschsprung’s disease and other gastrointestinal motility disorders. HMDSN also offers a group specifically for adults with motility disorders.

US News and World Report Gastroenterology

National recognition

Intermountain Primary Children's Hospital is ranked by U.S. News & World Report as one of the nation's best children's hospitals in 11 of 11 pediatric specialties, including gastroenterology and GI surgery.

Our locations

Slide 1 of 2

Frequently asked questions

Learn more

A child may benefit from referral to a pediatric inflammatory bowel disease clinic when they have suspected or diagnosed Crohn’s disease, ulcerative colitis or another form of IBD that requires specialized evaluation or treatment.

Referral may be especially helpful when a child has persistent symptoms, difficulty controlling inflammation, complications of IBD, poor growth or nutrition, or needs advanced medical and surgical care. Our Pediatric IBD Program provides coordinated care for children with both newly diagnosed and complex inflammatory bowel disease.

Crohn’s disease and ulcerative colitis are both types of inflammatory bowel disease, but they affect the digestive tract differently. Pediatric Crohn’s disease can cause inflammation anywhere from the mouth to the anus and may affect deeper layers of the intestinal wall.

Pediatric ulcerative colitis affects the inner lining of the colon and rectum. Both can cause diarrhea, belly pain, blood in the stool, fatigue and growth concerns, but treatment is tailored to the type, location and severity of your child’s disease.

Diagnosing IBD usually involves several types of testing. We start by reviewing your child’s symptoms, growth, medical history and family history. Blood and stool tests can help identify inflammation and other changes associated with IBD.

Your child may also need imaging, pediatric endoscopy or pediatric colonoscopy. During an endoscopy or colonoscopy, your child’s doctor can examine the digestive tract and take tiny tissue samples called biopsies to help determine whether Crohn’s disease, ulcerative colitis or another condition is causing the inflammation.

If your child continues to have inflammation or symptoms despite treatment, our team takes a closer look at their diagnosis, previous therapies and current disease activity. Additional blood or stool testing, imaging, pediatric endoscopy or colonoscopy may help us understand why treatment is not working as expected.

Children with complex inflammatory bowel disease may benefit from a different medication, advanced biologic therapy, nutrition support or surgical treatment. Our IBD clinic brings medical and surgical specialists together to determine the next step.

Most children with IBD are initially treated with medications and nutrition support, but surgery may be recommended when disease remains severe despite medical treatment or when complications develop.

Children with ulcerative colitis may need surgery to remove the colon and may be candidates for ileal pouch–anal anastomosis (IPAA), which creates an internal J-pouch. Children with Crohn’s disease may need surgery for complications such as narrowing of the intestine, abscesses or fistulas. Surgery is planned together with your child’s gastroenterology and surgical teams.

Pouchitis is inflammation of the J-pouch that can develop after IPAA surgery. Symptoms may include more frequent or urgent bowel movements, loose stools, cramping, fatigue or blood in the stool. Pouchitis can be acute or chronic. Acute pouchitis usually gets better with a short course of antibiotics. Chronic pouchitis lasts longer or keeps coming back and may need ongoing or additional treatment.

Pouchitis treatment may include antibiotics or other medications to reduce inflammation. If pouchitis keeps coming back or does not improve, additional testing can help us understand what is causing the inflammation and determine the best treatment to protect your child’s long-term pouch health.

Crohn’s disease and ulcerative colitis are chronic conditions, which means children typically need ongoing care even when they are feeling well. Regular follow-up helps us monitor inflammation, nutrition, growth, medication effectiveness and overall health.

As your child grows, our Pediatric IBD Program adjusts treatment to meet their changing needs and helps them become more involved in managing their health. The goal is not only to control IBD, but to help your child grow, stay active and participate fully in everyday life.