An estimated 1.6 million Americans are living with inflammatory bowel diseases, or IBD, and about 30,000 new cases are diagnosed each year. This group of chronic, lifelong diseases causes symptoms such as diarrhea, abdominal pain and intense cramps that come on without warning and create a sudden urge to use the bathroom.
Crohn’s disease and ulcerative colitis are the two main diseases in this group, and they can occur at any age. Among children, IBD is most commonly diagnosed during early adolescence, around age 12 or 13, and about 25 percent of IBD patients overall are diagnosed before age 20. An estimated 70,000 American children have IBD.
Experts do not understand exactly what causes IBD. Scientists theorize that a combination of four factors may lead to IBD: a genetic component, an environmental trigger, an imbalance of intestinal bacteria and an inappropriate reaction from the immune system.
Symptoms of Inflammatory Bowel Disease
The most common symptoms of IBD in children include abdominal pain or cramping, diarrhea (sometimes with blood), failure to gain weight or grow, fatigue, fever, rectal bleeding and weight loss. Symptoms can range from mild to severe, and they come and go. During periods when a child has no symptoms, the condition is “in remission.” When symptoms are present, it’s called having a “relapse” or a “flare-up.”
Inflammation inside the digestive tract causes these symptoms, says Ajay Gulati, MD, director of the UNC Children’s Center for Inflammatory Bowel Disease in Chapel Hill.
“This inflammation is just like inflammation you might get anywhere else, except it’s inside your body where you can’t see it,” he says. “The affected area gets red and swollen, and it can feel very painful.”
In Crohn’s disease, inflammation can happen anywhere between the mouth and anus. In ulcerative colitis, the inflammation happens just in the colon, or large intestine.
From time to time, we all experience inflammation in the digestive tract and related symptoms such as cramps or diarrhea. For most of us, this is a temporary problem that goes away on its own and we don’t have to see a doctor about it. But for people with IBD, Dr. Gulati says, the inflammation and symptoms “don’t shut off or go away.”
Special Challenges for Children and Teens with IBD
IBD presents certain unique problems for children and teens compared with adults. For example, since IBD can make eating difficult or painful for a young person who is still growing, it can lead to stunted or delayed growth, Dr. Gulati says.
“IBD tends to present more severely in children than in adults,” he says. “We treat it aggressively so that our patients can meet their important growth and development milestones before this window of opportunity closes.”
Children and teens with IBD also face special challenges at school. They may need to take medications that require one or more visits to the school nurse each day. In addition, they might need to go to the bathroom more often than their peers, and sometimes that means they have to go while a class is still in session rather than waiting for a break between classes.
The Crohn’s & Colitis Foundation publishes a guide for teachers and other school personnel to help them understand and accommodate the special needs of students with IBD. This guide is included in a folder of information that the UNC team gives to parents of children and teens in the pediatric IBD program, Dr. Gulati says. In addition, these parents can participate in the UNC IBD Parents Advocacy Group, which gives them the opportunity to provide the clinic with feedback to continually improve the care of children with IBD.
Diagnosis and Treatment of IBD in Children
There is no single test that a doctor can use to diagnose IBD, Dr. Gulati says. “Instead, we have to do some detective work.”
That means interviewing patients and their parents to get a good medical history and doing a physical exam. It also typically includes blood tests to look for anemia or markers of inflammation. Doctors may also require a stool sample for analysis under a microscope, and they’ll probably perform an upper endoscopy and a colonoscopy to inspect the inflamed area and take tissue samples for biopsies. Imaging studies such as a CT scan or an MRI may also be used.
There is no cure for IBD, but with treatment—often a combination of medications, diet and sometimes surgery—patients with IBD can lead robust lives.
Once a patient has been diagnosed with IBD, treatment is given in two phases. First, during the induction phase, the goal is to “put out the fire” and get inflammation under control, Dr. Gulati says. Patients are often given corticosteroid medications, such as prednisone or hydrocortisone. These drugs suppress the body’s immune system and are used to quickly induce remission. In addition, patients may use diet-based therapies, such as nutritional shakes instead of solid food, for up to six weeks. In some cases, surgery to repair or remove part of the intestine can also be a helpful tool in this phase of therapy.
After the induction phase is over, the maintenance phase begins. Common maintenance phase medications include drugs such as mesalamine (which decreases inflammation in the colon); immunomodulators such as methotrexate and 6-MP (drugs that suppress the immune system); and biologic agents such as infliximab and adalimumab (medications that stop certain proteins in the body from causing inflammation). Treatment may also include specialized psychological support to help children and families cope with emotional challenges and manage stress.
For many patients, the maintenance phase will continue for the rest of their lives.
“My goal for the maintenance phase is to help patients get to the point where their IBD is so well-managed that they almost forget they have it. And for many patients, this goal is definitely achievable,” Dr. Gulati says.
You’ll need a physician’s referral to make an appointment at the UNC Children’s Center for Inflammatory Bowel Disease. For more information, call UNC Pediatric Gastroenterology at (919) 966-2435.