Understanding pediatric Crohn’s disease
Crohn’s disease, also known as CD, is a common type of inflammatory bowel disease (IBD). It’s a lifelong disease that causes inflammation in the digestive tract.
What is Crohn’s disease?
Crohn’s disease can cause inflammation along any part of the digestive tract from the mouth to the anus, but most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine.
The inflammation can be on the surface as well as the deeper layers of the digestive tract. It often appears in patches, with areas of inflammation alongside healthy tissue.
Onset and causes
Though it can appear at any age, pediatric IBD usually starts during adolescence.
It’s important to note that pediatric Crohn’s disease tends to be more extensive and active than adult-onset Crohn’s disease, so make sure that your child is getting the help and treatment they need. Crohn’s disease is believed to be due to a combination of genetics and environment. Together, these factors trigger an immune response that causes inflammation.
You may wonder what a CD diagnosis means for your child’s future. While Crohn’s disease is a lifelong condition, many children are able to live active lives—and are healthy more often than they are unwell. With ongoing care, they can continue to grow, learn, and take part in the activities they enjoy the most.
What are the common symptoms of pediatric Crohn’s disease?
There are many ways CD can show up in the body. You may want to pay particular attention if your child is growing more slowly than expected. This can be one of the first ways that Crohn’s disease appears in children.
Signs and symptoms of CD: general
Many signs or symptoms are related to the digestive tract. These may include:
Poor growth
Weight loss or lack of weight gain
Abdominal pain
Diarrhea
Blood in the stool
Constipation
Nausea/vomiting
Cracks or painful bumps near the anus
Unexplained fevers
Many signs or symptoms are related to the digestive tract. These may include:
Poor growth
Weight loss or lack of weight gain
Abdominal pain
Diarrhea
Blood in the stool
Constipation
Nausea/vomiting
Cracks or painful bumps near the anus
Unexplained fevers
Signs and symptoms of CD: outside the digestive tract
There are some signs or symptoms of IBD that appear outside the digestive tract. These are called extra-intestinal manifestations (EIMs) and include:
Joint pain
Unusual rashes
Irritation or redness in the eyes
Frequent canker sores
Kidney stones
Weak bones (called osteopenia)
Blood clots or anemia
Inflammation of the liver or pancreas
There are some signs or symptoms of IBD that appear outside the digestive tract. These are called extra-intestinal manifestations (EIMs) and include:
Joint pain
Unusual rashes
Irritation or redness in the eyes
Frequent canker sores
Kidney stones
Weak bones (called osteopenia)
Blood clots or anemia
Inflammation of the liver or pancreas
Contact your child’s GI doctor right away if you see any symptoms of Crohn’s disease worsening or reappearing.
How severe is pediatric Crohn’s disease?
Crohn’s disease looks different for every child.
In children, CD can mean a higher risk for more severe disease and complications than adult-onset CD, so staying on top of a doctor visit is really important. The tests your child’s GI doctor will run at these appointments help make sure the treatment is working—it’s important not to rely on symptoms alone.
It also helps to know how severe your child’s Crohn’s disease is, because that’s an important part of choosing treatments. If you’re not sure, it’s worth reaching out to your child’s GI doctor to ask.
If your child has moderate-to-severe Crohn’s disease, or is at high risk for a complicated disease course, a biologic treatment may be appropriate. Talk to their GI doctor to learn more.
Reassure your child
You didn’t do anything to get Crohn’s disease. It just happens sometimes, and it’s not your fault.
Which treatments are available for children and adolescents?
Goals of treatment include healing the tissue in the intestine—not just making symptoms go away. Talk to your child’s doctor about which treatment may fit your child’s situation.
Here are treatments for pediatric Crohn’s disease:
Anti-TNFs
A type of medicine that blocks tumor necrosis factor (TNF) in the body to reduce inflammation in the intestine as well as other organs and tissues.
Corticosteroids (steroids)
A type of drug that works quickly to lower the activity of the immune system and decrease inflammation. They are usually only used for a short time because of their side effects.
They’re often used as a bridge until maintenance treatments can reach full effect.
Exclusive enteral nutrition (EEN)
A complete liquid-formula diet that replaces all food for 6–8 weeks, though it can be used for up to 12 weeks. Foods are then slowly added back into the diet until typical eating resumes. EEN helps to decrease inflammation and heal the intestines.
Immunomodulators
A type of drug that suppresses the immune system’s ability to cause ongoing inflammation. They can take several months to improve symptoms.
Interleukin inhibitors
These medicines target and attach to proteins called interleukins, which play a role in gut, as well as other organ and tissue, inflammation.
Each treatment option comes with its benefits and potential risks, and depends on your child’s individual situation.
Biologics are medicines made from living cells that are given by an injection or an infusion (a needle placed in your vein). They target proteins in the body that may be involved with the inflammation that occurs in IBD. If your child has moderate-to-severe Crohn’s disease, or is at high risk for a complicated disease course, a biologic treatment may be appropriate.
Sometimes surgery is required if the disease gets too severe and/or your child develops complications.
Tips for talking with your child’s GI doctor
If your child has moderate or severe Crohn’s disease, make sure to talk through all the treatment options with their care team.
Working closely with their healthcare team can help you feel more confident and at ease with whatever path you choose together. You know your child best, so don’t be afraid to speak up.
Use the following tips to start the conversation with your child’s GI doctor.
- Ask about the severity of your child’s Crohn’s disease.
- If your child has moderate-to-severe Crohn’s disease, or is at high risk for a complicated disease course, a biologic treatment may be appropriate.
- Don’t be afraid to bring up the topic of surgery risk—it’s important to understand how current decisions may impact the future.
- It’s okay to be collaborative during these discussions—the more you know and understand, the more help you will be to your child.
“Even though IBD can be tough, it’s important not to spend all your time feeling bad for yourself.”
“Even though IBD can be tough, it’s important not to spend all your time feeling bad for yourself.”
Liliana Living with IBD
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Guide to pediatric CD
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