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Approximately 70,000 children in the United States have IBD.
Untreated IBD can lead to significant growth and developmental delays.
Several treatment options are available, giving kids an opportunity for good outcomes.
When your child has a stomachache, some diarrhea, and vomiting, your first thought might be a virus. That’s a logical assumption these days. But when these symptoms linger — and they’re joined by fatigue, weight loss, and slow growth — it’s time to look for another answer.
If this sounds like your child, it’s a good idea to talk with your pediatrician about Inflammatory Bowel Disease (IBD). Roughly, 70,000 children in the United States — about 10 per 100,000 — have the condition, and those numbers are rising.
To help you better understand IBD and how it can affect your child, we talked with pediatric gastroenterologist Jonah Essers, M.D., MPH, at Swedish Pediatric Specialty Care – First Hill and Issaquah. He explains how IBD is different from Irritable Bowel Syndrome (IBS) and what treatments are available.
“Children who are diagnosed with IBD tend to have a unique set of problems, including trouble with growth and development,” he says. “It’s important to know that managing pediatric IBD can be harder because their condition tends to be more severe.”
The difference between IBD and IBS
You may hear both IBD and IBS discussed frequently. They may sound like the same thing, Dr. Essers says, but they’re not.
Children with IBS experience uncomfortable symptoms, including bloating, diarrhea and an urgent need to use the bathroom. However, they’re otherwise healthy and will follow a normal path for growth and development.
With IBD, though, the immune system mistakenly attacks the gut. This causes inflammation in the intestinal tract. Over time, that causes lasting damage.
“The main difference between IBD and IBS is the detectable amount of inflammation a child has in their intestines,” he says. “It’s possible to have IBD without IBS and IBS without IBD.”
The symptoms of IBD
Unlike several other pediatric diseases, IBD can be different for every child. There’s no one test that reliably reveals whether your child has the condition. In many ways, Dr. Essers says, doctors make the diagnosis by ruling other things out.
“You get diagnosed with IBD similarly to how you would be found guilty by a jury of your peers when they weigh the evidence for or against you,” he says. “When the evidence overwhelmingly supports a diagnosis of IBD, that’s when a child gets that diagnosis.”
A doctor will consider an IBD diagnosis if your child has any combination of these symptoms:
- Abdominal pain
- Blood in the stool
- Joint swelling
- Canker sores
- Iron deficiency anemia
- Delayed onset (or cessation) of menstruation
- Poor growth
- Poor bone density
- Delayed puberty
“There’s really no one flavor of inflammatory bowel disease,” he says. “If a child presents with any of these symptoms over time a doctor will make the decision to investigate.”
To determine whether your child has IBD, a pediatric gastroenterologist will use a combination of tests. Together, a physical exam, blood tests, stool studies, imaging scans, and endoscopy can provide enough information to decide on the best treatment.
Finding the answer is important, Dr. Essers says, because IBD can impact your child’s long-term health.
“Children aren’t diagnosed with IBD as frequently as adults are, though we see a peak of it during the teen years,” he says. “Getting the right treatment is important because if you get sick from IBD as a kid, you often are clinically worse. You’ve been dealt a lousy genetic hand.”
In addition to a standard physical exam, these tests will help aid in diagnosis:
- Blood tests: Your doctor will look for iron deficiency anemia, low protein and high inflammation markers.
- Stool studies: These tests will identify the presence of any inflammation markers. They will also rule out any other infections, such as C. difficile, E. coli, and salmonella.
- Imaging: Doctors will use ultrasound, MRI and CT scans to identify inflammation. Since children are so sensitive to radiation, X-ray tests and CT scans are used less frequently. Your physician will use these tests to look for any narrowing in the bowels, abnormal connections between the intestines and other organs, an abscess, or intestinal swelling.
- Endoscopy: This study uses a small light and camera on the end of a thin, flexible tube to show doctors the inside lining of the bowel. It provides the clearest pictures and allows doctors to take tissue samples for biopsies.
Just like diagnosing IBD, treating it is largely an investigative endeavor, Dr. Essers says.
“The IBD community isn’t advanced enough yet for personalized care. We can’t predict, in advance, which drugs a patient will respond to,” he says. “We’re practicing closer to trial-and-error medicine. We will try a drug that we think might work. If it doesn’t, we try the next one.”
Fortunately, Swedish offers many treatments to help reduce symptoms and improve your child’s health. They include biologics, dietary therapies and surgery, to meet the needs of individuals kids:
- Biologic therapy: These specially designed medications alter the immune system to stop it from attacking the intestinal tract. Children may need to try one or more medications to find the most effective one. Options include:
o Certolizumab pegol
- Dietary therapy: A Swedish dietician meets with children and their families to pinpoint changes to their diet that could decrease the level of intestinal inflammation. Removing certain foods for a period can reduce symptoms. The Specific Carbohydrate Diet (SCD) will nearly eliminate all sugar. There is evidence that long term use of SCD can help reduce inflammation, which minimizes the need for medications. The Exclusive Enteral Nutrition (EEN) diet is a diet of medical-grade formula, which completely replaces all table food. This is a short-term diet that is very effective in improving the health of severely ill children with IBD. Your doctor could also recommend another type of anti-inflammatory diet, such as the Mediterranean diet,.
- Surgery: Surgery is a tool, just like medication and dietary changes. For those with very severe ulcerative colitis, a condition that includes ulcers inside the digestive tract, the entire colon can be removed, and the small intestines are attached to the rectum. In addition, children with Crohn’s disease who don’t respond to medication may also need to have part of their bowel removed. Other surgical procedures involve draining abscesses and other areas of inflammation.
Maximizing outcomes for children with IBD
Alongside identifying the right medications or treatments, Swedish takes additional steps to help children with IBD.
The Swedish IBD Center includes services from naturopaths, and providers who can guide you through alternative therapies that work well with standard medical treatments. Swedish also offers an IBD Transition Program that helps children prepare to care for their IBD as they move from pediatric to adult healthcare.
“We spend time over several years helping patients learn to advocate for themselves, how to be assertive, how to report symptoms to their doctor, how to access doctors, and how to monitor themselves,” he says. “By the time they reach the adult world, they are ready to transition with these tools.”
Although IBD can cause significant discomfort and impact a child’s development, medications and therapies are now available that can reduce the overall impact on their lives.
“In 2022, the prognosis for most of my patients is excellent. The future is bright,” he says. “Thanks to most of the new therapies we have, we’re usually able to find one or a combination of medications that allow patients to achieve a clinical remission so they actually feel normal.”
Learn more and find a provider
If you have questions about gastrointestinal health or IBD and would like to schedule an appointment, contact Swedish Inflammatory Bowel Disease Center. Whether you require an in-person visit or want to consult a doctor virtually, you have options.
Swedish Virtual Care connects you face-to-face with a nurse practitioner who can review your symptoms, provide instructions and follow up as needed. If you need to find a doctor, you can use our provider directory.
Join our Patient and Family Advisory Council.
This information is not intended as a substitute for professional medical care. Always follow your health care professional's instructions.
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