Inflammatory Bowel Disease in Children and Teens

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is more common in adults than children. Nevertheless, between 5% and 25% of cases of IBD are diagnosed during childhood or adolescence.1 Put another way, there are about 58 cases of Crohn’s disease and 34 cases of ulcerative colitis per 100,000 individuals younger than 20 years.2

Location of the disease and other characteristics often differ between IBD in young people compared to adults. In older children and teens, Crohn’s disease usually affects the end of the small intestine (ileum). In the very youngest children (ages 0-6 years), inflammation is typically limited to the large intestine (colon).1 In adults, the affected area is usually stable. In children, however, the inflammation is more likely to spread or extend into other areas of the digestive tract.1 Nearly two-thirds of children have perianal Crohn’s disease.In ulcerative colitis, children are more likely to have more extensive disease than adults diagnosed with the condition. About 77% of children and teens diagnosed with ulcerative colitis have pancolitis, where the whole large intestine is inflamed.1

Children with Crohn’s disease tend to have more complications than adults, and children with ulcerative colitis are more than twice as likely as adults to need surgery in the first two years after diagnosis.1 In addition, being a teenager with IBD poses unique emotional and social challenges.

What are risk factors for pediatric inflammatory bowel disease?

Gender and family history are unique risk factors in children and teens.

Gender. Boys are at greater risk than girls of being diagnosed with Crohn’s disease.2 However, after puberty, women are more likely than men to have Crohn’s disease.1 This fact suggests that hormones play a role in Crohn’s disease. There does not seem to be a difference between boys and girls in ulcerative colitis.2

Family history. Family history is a strong risk factor for IBD in children.1 In one study, 16% of patients younger than 17 years had a family member with Crohn’s disease, compared to 7% of patients diagnosed after age 60. In ulcerative colitis, 13% of patients younger than 17 years had a family member with ulcerative colitis, compared to just 3% of patients diagnosed after age 60.1 This fact suggests that genetics have a significant role in early-onset IBD.

What are the complications of inflammatory bowel disease in children?

Complications of IBD in children are poor growth, delayed puberty, and low bone mineral density.1,4,5 These complications are common and related to each other. Often, they are present at the time of diagnosis.4 There are several factors that contribute to these complications, including inflammation, difficulty gaining weight, and medications.

Poor growth and weight gain. There are many reasons that children and teens with IBD have a hard time gaining weight.4 Your digestive tract may have problems absorbing nutrients. You may not feel like eating very much. Or you may try not to eat much so that you have fewer symptoms. You may limit your diet and end up not eating enough protein or certain vitamins or minerals. Corticosteroids, which are medications often used to treat IBD, can slow growth.4

Recent studies show that about 10% of children and teens are not growing well when they are diagnosed with IBD.4 Boys are more likely to have poor growth than girls.4 Studies from the 1990s showed that poor growth tends to continue, even with treatment. However, better growth may be a benefit of new medications for IBD. More recent research has shown that children with IBD have average heights as adults.4

Delayed puberty. Having IBD can delay puberty, particularly in cases of Crohn’s disease and especially for girls.4 Reasons for this include inflammation and difficulty with weight gain. Systemic inflammation can interfere with hormone regulation, which affects puberty. Poor weight gain leading to low body fat can also delay puberty in girls.4

Delayed puberty matters because sex hormones drive a growth spurt just before you stop growing.4 Research shows that going through puberty late may lead to less of a growth spurt. It also makes a difference to your quality of life. Going through puberty later than your friends can be difficult. Newer treatments have reduced the delay in puberty, but have not eliminated it.4

Low bone mineral density. Bone mineral density (BMD) is a measure of how much calcium and other minerals are in your bones. Nearly half of children with IBD have low BMD when they are diagnosed.4 Unfortunately, BMD often does not improve with treatment.

Bone grows strongest during the teenage years.5 By the time girls reach age 16 and boys reach 18 to 20 years, the majority of bone mass has accumulated.5 Having IBD as a teenager interferes with bone building. In order for minerals to accumulate in the bone, sex hormones are needed. Delayed puberty can interfere with this process and so can medications used to treat IBD, such as corticosteroids. Low BMD continues into adulthood.4 Adults with IBD are more likely to have fractures.

What are treatment recommendations for children and teens with inflammatory bowel disease?

The best way to minimize long-term complications of IBD in children is to focus on:4,5

  • Treating the underlying disease
  • Meeting nutrient needs
  • Encouraging physical activity when it is possible

Malnutrition. Studies have shown that tube feeding (enteral nutrition) can decrease inflammation and help patients recover during active IBD.6 Tube feeding is done by inserting a thin, hollow tube from your nose into your stomach or small intestine. A nutrient-rich formula flows through the tube.

Tube feeding can help start remission. Eight-five percent of children newly diagnosed with active IBD who receive all their nutrition through tube feeds go into remission.6 Therefore, tube feeds may be used instead of corticosteroids for children. Tube feeding helps the intestinal lining heal and improves growth.5

Once a period of recovery has started, dietary counseling may be useful to improve or maintain nutrient intake with a normal diet.7 In some case, tube feeding can continue in addition to a normal diet.5 However, this can be hard on families.7

Bone health. Studies have shown that for children with IBD, treating the inflammation may be better for bone health than using bone-building medications.5 The North American Society of Pediatric Gastroenterology Hepatology and Nutrition (NASPGHAN) has developed recommendations for improving bone health in children with IBD:5

  • Consume 800 to 1000 IU/day of vitamin D.
  • Consume 1000 to 1600 mg/day of calcium, for children age 4 years and up.
  • Check vitamin D levels checked each spring.
  • Do weight-bearing and muscle-strengthening exercises 2 to 3 times per week.
  • Have a dual-energy x-ray absorptiometry (DXA) screening examination.

DXA is the main test used to diagnose low bone mineral density. NASPGHAN recommends that children who can lie on a cushioned table for 15 to 20 minutes have a DXA exam.5 The results are reported as Z-scores. Z-score is a comparison of your bone density with the bone density in a healthy population of the same age, sex, and ethnicity.

  • Z-score less than -1 suggests suboptimal BMD. DXA should be repeated every 1 to 2 years.
  • Z-score less than -2 indicates low BMD.

In general, NASPGHAN does not recommend imaging tests to look for spinal fractures.5 However, if a child has ongoing back pain and low BMD, it may be appropriate to check for a spinal fracture. Spinal fractures usually do not cause any symptoms, but they do increase the risk of having another fracture. No one knows how common spinal fractures are in children with inflammatory bowel disease.

Endocrine intervention. When puberty is very delayed, it may be helpful to work with an endocrinologist. An endocrinologist is a doctor that specializes in hormonal imbalances. Options may include testosterone (for boys), estradiol (for girls), or growth hormone.4

What makes inflammatory bowel disease especially hard for teenagers?

It can be difficult for teenagers to talk about IBD with friends. They may feel embarrassed about the symptoms they have. They may feel bad about their body.8 Having an ostomy can alter a person’s daily life and self-image dramatically.9

Maintaining friendships is a challenge for a teen with IBD. It may be difficult for peers to understand why plans might need to be frequently cancelled due to a flare-up or hospitalization. Because IBD is an “invisible illness,” friends and classmates may not understand how awful the person with IBD feels inside. Although a teen with IBD may feel too sick to return messages or get together, friends may assume the individual just doesn’t want to hang out. Therefore, teens with IBD may struggle with isolation on top of their illness. These feelings can lead to anxiety and depression. As many as 25% of adolescents with inflammatory bowel disease are depressed.8 Teens with IBD who feel depressed should talk to their provider about treatment. Options include cognitive behavioral therapy and medication.

IBD requires self-management.10 Although health care providers can prescribe medication and make recommendations on self-care, the individual has to carry out that plan. It is hard for a person of any age to do that, day after day. It can be especially hard for a teenager.

Studies have shown that when the family is involved in care, the teen is more likely to stick to the plan.10 However, it can be hard for an individual to depend on parents or other family members. Some family members may become overprotective, which may be frustrating.9 On the other hand, it is possible that  many people are willing to help and support you when you need it. Some teenagers describe accepting their illness—and particularly an ostomy—as being part of their personal growth.9

Written by: Sarah O'Brien and Emily Downward | Last Reviewed: January 2018.
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