Including families in pediatric IBD care improves patient outcomes


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A child’s chronic illness diagnosis affects the whole family. Family-based care can help parents make more informed decisions about treatment.

When a child is diagnosed with inflammatory bowel disease (IBD), it can have repercussions on the whole family.

IBD treatment usually requires some form of dietary changes, which can influence how the rest of a patient’s family eats. And IBD symptoms, such as abdominal pain, diarrhea, fatigue, weight loss, or poor weight gain, can affect a child’s quality of life and limit their family’s daily routines. Even simple trips to the store can become anxiety-inducing for both the child and their parents.

With rates of IBD rising in North America – 15 in 100,000 children are diagnosed with the condition – it’s more important than ever that pediatric gastroenterologists build relationships with patients and their families.

The comprehensive services UT Southwestern provides though the Inflammatory Bowel Disease Center’s Pediatric IBD Program are designed to support patients’ families. When providing treatment, our goal is to help children enjoy long, active lives by achieving clinical, endoscopic, and histologic remission – reducing or eliminating their inflammation and the disruptive symptoms it causes.

Our clinical remission rate is 80%, meaning our patients’ physical symptoms have significantly decreased or disappeared altogether. Working together, our gastroenterologists, nutritionists, psychologists, social workers, and surgeons can help ease the burden of IBD on patients and their families.

How IBD is diagnosed in children

We don’t know exactly what causes IBD, but it’s often linked to genetics, dysregulation in the immune system, and environmental factors.

IBD includes two common types of chronic inflammation in the digestive system:

  • Crohn’s disease, inflammation anywhere within the lining of the gastrointestinal tract
  • Ulcerative colitis, inflammation and ulcers within the inner lining of the colon and rectum

Common symptoms include abdominal pain, blood appearing in the stool, diarrhea, fatigue, and weight loss. Children can also experience less obvious symptoms that many parents – and general providers – don’t associate with IBD, such as:

  • Lack of growth
  • Joint pain or swelling
  • Skin rash

If your child is experiencing symptoms, we’ll perform a comprehensive medical assessment and physical exam and review their medical history. Blood tests will show us if they have anemia as a result of blood loss in their digestive tract, or elevated markers of inflammation in the blood. Stool tests can help us look for blood in their stool and signs of intestinal inflammation – and rule out other infections that might be causing symptoms.

To actually see inflammation or ulcers in their digestive system, we’ll likely perform one or more additional tests, including:

  • Colonoscopy to view the colon and rectum
  • Upper endoscopy to see the esophagus, stomach, and small intestine
  • Abdominal CT scan or MRI and PillCam (capsule endoscopy) to take images of the small and large intestines.

The Therapeutic Endoscopy Unit at Children’s Health, where UT Southwestern pediatric specialists often treat young patients, is one of a few centers in the country offering a balloon procedure that can help diagnose small intestine conditions in children. By inserting a scope with tiny balloons attached, we can move much further into the small intestine for a more accurate view.

After we diagnose the severity of the disease, we discuss treatment options with the patient and their family to ensure it fits their preferences and lifestyle as much as possible.

Related reading: Why isn’t my child gaining weight? 3 factors that can cause 'failure to thrive'

Customizing IBD treatment for patients and their families

It’s not easy for parents to hear their child has been diagnosed with IBD. Many react by learning as much as they can about the disease on their own.

I recommend the Crohn's & Colitis Foundation as an accurate resource, and I strongly recommend that families have open, honest discussions with their child’s care team about symptoms, treatment, and any new findings on their child’s condition. That way everyone is on the same page with the most current information.

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Common symptoms for IBD include abdominal pain, blood appearing in the stool, diarrhea, fatigue, and weight loss.

More involved families become more educated – and they make better informed decisions about care, which results in better outcomes for their children.

Medication is typically the first line of treatment, and most patients need more than one. These can include:

  • Biological therapies
  • Corticosteroids
  • Immune system suppressors
  • Nutritional therapy

Stronger medications are administered via infusion or injection. We discuss the patient’s and family’s lifestyle when determining which method will be more efficient. Injectables might be more convenient for busy families who would have a difficult time bringing their child in for an infusion every seven or eight weeks, for example.

Surgery to remove the affected areas of the gastrointestinal tract is an option but usually only in advanced or complex cases. It depends on each patient’s preference and how effectively their symptoms respond to medication.

One of my older patients with Crohn’s disease requested surgery when his medication became less effective. He also had an ileostomy, a procedure that creates an opening in the abdominal wall and moves the end of the small intestine to the opening. Waste is then transported to the opening and collected in a colostomy bag – a small, temporary bag that must be emptied regularly.

After surgery, the patient said he felt “normal” for the first time in his life. He used the bag for a couple years, essentially giving his colon a break. We then reversed the procedure and he has continued biologic medication and is doing much better.

Related reading: 7 common causes of pediatric GI bleeding, plus treatment information

Dual therapy from a multidisciplinary team

Because IBD affects several aspects of life, all pediatric patients at the Inflammatory Bowel Disease Center have access to a team of surgeons, gastroenterologists, and experts in:

  • Nutrition
  • Psychiatry
  • Psychology
  • Social work

I encourage parents and guardians to partner closely with our nutritionists for meal planning guidance. For example, our nutritionists can help patients customize traditional ethnic cuisines that taste good, won’t complicate the patient’s IBD symptoms, and can be enjoyed by the rest of the family.

It’s not uncommon to see depressive symptoms in pediatric patients with chronic illnesses, and research on the long-term effects of IBD on mental health continues to expand. Ongoing access to psychological care providers who know patients’ medical history and frequently collaborate with their other providers can make IBD management easier.

Including a psychologist at the beginning of treatment planning can help patients feel more comfortable verbalizing their emotions and help both patients and their families develop healthy coping mechanisms to manage the stress that accompanies a chronic condition.

Related reading: What causes GI issues in teens – and how to get them to talk about it

One clinic, several support systems

Building relationships with my pediatric gastroenterology patients and their families has always been an important part of my practice. A TED Talk I listened to recently reinforced the significance of these relationships and why it’s important for pediatric providers to ensure their patients’ family members are also properly supported.

The talk was by researcher Elizabeth Blackburn, Ph.D., who won a Nobel Prize in 2009 for her research on telomeres – DNA structures that protect the body’s chromosomes from damage. As cells divide, telomeres shorten. The faster they shorten, the faster the body ages.

Working with psychologist Elissa Epel, Dr. Blackburn discovered that mothers of children with chronic conditions such as IBD often experience chronic stress that prematurely shortens their telomeres. Along with advanced aging, this can affect their immune system, causing them to get sick more often and experience a lower quality of life.

The team at UTSW’s Inflammatory Bowel Disease Center understands the toll IBD can take on not just pediatric patients but also their parents and guardians, and we provide access to:

  • A formal process for transitioning pediatric patients to adult care
  • Educational programs
  • Ongoing, innovative research
  • Social outings
  • Support groups

Guided by empathy, we’re here to make all lives affected by IBD easier and healthier.

For comprehensive pediatric IBD care customized to your family, call 469-604-9090 in Frisco or 469-497-2505 in Plano, or request an appointment online.