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Lukas’s Story

Lukas was just 8 years old when diagnosed with Crohn’s disease. His clinical course ultimately led the family to UNC Children’s and a remarkable recovery.

Trust our expert care team.

Pediatric Inflammatory Bowel Disease

UNC Children’s Center for Inflammatory Bowel Diseases offers multidisciplinary team with expertise caring for kids with inflammatory bowel disease (IBD). Every year, we help about 500 children and young adults reduce their physical symptoms and cope with emotional challenges, so they can live active, healthy lives.

What’s Inflammatory Bowel Disease?

Inflammatory bowel disease refers to a group of chronic conditions that cause inflammation and sores in the digestive system. The two main types are:

  • Crohn’s disease – May occur anywhere in the digestive tract, from the mouth to the anus, but most commonly affects the lower part of the small intestine
  • Ulcerative colitis – Affects the colon and rectum

Symptoms of Crohn’s & Colitis

IBD can develop at any age but is most commonly diagnosed in children during early adolescence, at around 12 or 13 years old. The most common symptoms of inflammatory bowel disease in kids include:

  • Abdominal pain or cramping
  • Diarrhea, sometimes with blood
  • Failure to gain weight or grow
  • Fatigue
  • Fever
  • Rectal bleeding
  • Relapsing gastrointestinal illness over several months
  • Weight loss

Symptoms can range from mild to severe, and they come and go. During periods of time when your child has no symptoms, the condition is “in remission.” When symptoms are present, it’s called having “a relapse” or “a flare-up.”

Treatments

IBD Treatments for Children & Teens

Your child’s IBD care team will create an individualized treatment plan based on his or her diagnosis and the severity of symptoms. We also consider your child’s age and manage symptoms in ways that won’t negatively affect growth and development. Your child’s treatment plan may include:

  • Nutrition therapy
  • Medications, such as antibiotics, mesalamine, steroids, immunomodulators or biologics
  • Surgery to repair or remove parts of the intestine
  • Specialized psychological support to help children and families cope with emotional challenges and manage stress

If your child is eligible for a clinical research trial, s/he may benefit from new treatments not yet widely available.

Your Visit

Preparing for Your Visit

Most children diagnosed with IBD visit us at least twice a year, so we can monitor nutrition and growth. We’ll want to see your child more often if s/he is experiencing frequent flare-ups. Get the most out of your clinic visits by bringing:

  • A diary of symptoms for one week before the visit. Include information on abdominal pain, general wellbeing, energy level, number and consistency of bowel movements and other symptoms
  • A list of all current medications, vitamins and supplements
  • A list of any medications that need to be refilled
  • Any questions you or family has for the doctor

Between appointments, call 919-843-9829 to speak with a nurse about non-urgent questions or concerns. If you call between 7:30 a.m. and 3:30 p.m. Monday through Friday, we’ll call back the same day. If you call after 3:30 p.m. or on the weekend, we’ll return your call on the next business day.

Research

Research Network Leading to Better Patient Outcomes

In 2007, UNC Children's was one of the founding members of ImproveCareNow network, a research collaborative focused on pediatric inflammatory bowel disease (IBD), which includes Crohn's disease and ulcerative colitis.

While there haven't been any new medications brought to marketing in recent years, patient outcomes have improved dramatically across the network, including at UNC Children's, where remission rates for pediatric IBD patients climbed from about 60 percent in 2007 to more than 80 percent currently. Learn more about how this partnership is improving our patient outcomes.

Support for Parents

Find support from other parents who share your experience of caring for a child with IBD by joining the iPAG, the North Carolina IBD Parents Advocacy Group. To get involved, talk to the clinic staff or email UNCiPAG@gmail.com.

A Letter From iPAG to Parents of Children with IBD

Caring for a child with IBD can be tough. We know and we are here to help.

The North Carolina IBD Parents Advocacy Group is a team of parents of children living with IBD. Some of us are fairly new to the world of IBD—a world filled with new symptoms, medications, tests, doctor’s appointments, and a whole new vocabulary. Others of us have been on this journey for quite some time. Our goal is to be a resource for families touched by pediatric IBD and the doctors and nurses who care for them. Mostly, we aim to be a source of information and emotional support for parents of kids living with IBD.

Having gone through many of the tough stages of IBD including the initial diagnosis, decision-making regarding treatment, hospitalization, surgery, and the transitions that occur during the teenage years, we have been there and can help you as you tackle these challenges. As parents, we understand how important it is to see our kids feeling well and living a normal life, in spite of IBD.

If you want to talk to one of our parents or want to get involved in our group, please let the clinic staff know and they can help us connect. You also can email us directly at UNCiPAG@gmail.com.

Ask for a Referral

You’ll need a physician’s referral to make an appointment at the UNC Children’s Center for Inflammatory Bowel Disease. For more information, talk to your doctor or call us at 919-966-2435.

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