What Is Inflammatory Bowel Disease (IBD)?
IBD is a lifelong inflammation of the GI tract. Symptoms range from mild to severe.
IBD and irritable bowel syndrome (IBS) are not the same health issue, but they can occur at the same time.
The rate of IBD continues to increase in children, mostly in young, school-aged kids.
What are the types of IBD?
Types of IBD include:
- Crohn's disease. Mostly occurs at the end of the small intestine or colon. But it can affect any area of the GI tract (from the mouth to the anus).
- Ulcerative colitis (UC). Constant inflammation that affects only the lining of the colon.
- Indeterminate colitis. Labeled as neither Crohn's nor UC, it only affects the colon.
In all forms of IBD, you can have inflammation in other parts of your body outside of the GI tract. Doctors often call these “extraintestinal manifestations."
They most often involve the eyes, joints, bones, skin, kidneys, and liver.
What causes IBD in children?
You can't catch IBD from someone else. But research shows a mix of genetic or environmental risk factors can trigger it.
These include:
- Family history of IBD.
- Being born by C-section.
- Having very little breast milk feeding.
- Early and frequent use of antibiotics.
- Being around people who smoke.
- Western diet (processed, high fat, refined sugar).
- Not being active.
- Use of anti-inflammatory drugs (NSAIDs).
If your genes make you more likely to get IBD, your white blood cells may have an abnormal immune response. They send out proteins (cytokines like TNF-alpha and interleukins) to attack the GI tract. This causes swelling and injures the tissue.
IBD Symptoms and Diagnosis in Kids
What are the signs and symptoms of IBD?
A child with IBD may have symptoms such as:
- Belly pain.
- Bloody diarrhea.
- Weight loss.
- Stunted growth.
- Fever.
- Decreased appetite.
- Mouth ulcers.
- Fistulas, skin tags, fissures, and abscesses around the anus.
How do you diagnose IBD?
To diagnose IBD, your child will have a physical exam.
The doctor will check for IBD symptoms and may also order:
- Stool samples to detect infection, blood, and inflammation.
- Blood tests to check for anemia, swelling, nutritional deficits, liver and kidney function, and electrolytes.
- Colonoscopy or endoscopy to see diseased parts of the GI tract and, if needed, take tissue samples to study.
- CT scan or MRI to look at parts of the small intestine that the scope can't reach.
What Are the IBD Treatment Options for Children?
There's currently no cure for IBD.
Our team will work with you to create a complete treatment plan for your child, which may include:
- Medicine.
- Diet and nutrition changes.
- A mix of both.
The goal of IBD treatment is to:
- Get rid of your child's symptoms.
- Improve their growth.
- Heal the intestines.
- Maintain your child's quality of life.
Your child's GI doctor at UPMC Children's will discuss with you what they suggest for treatment. We aim to find the best mix for your child.
Medication to manage IBD
The short-term use of certain medicines can stop IBD symptoms (induction therapies). We may add others to manage the disease over the long term (maintenance therapies).
Drugs doctors often use to treat IBD also suppress the immune response. Your child may need to have lab tests every 3 to 6 months. This lets their doctor watch for any side effects and check their response to treatment.
The following medicines doctors often use to manage IBD, either as induction or maintenance treatments.
5-ASA (oral or rectal)
Induction and/or maintenance
- Balsalazide (Colazal®).
- Mesalamine (Apriso™, Asacol® HD, Canasa®, Delzicol™, Lialda™, Pentasa®, Rowasa®).
- Sulfasalzine (Azulfidine®).
Exclusive enteral nutrition or EEN (by mouth or nasogastric tube)
Induction
- A diet where 80 to 100% of daily calories come from medically complete formula for 8 to 12 weeks.
- Can work as well as corticosteroids to induce remission in children with mild-to-moderate Crohn's disease.
Corticosteroids (IV and oral)
Induction
- GI tract specific: budesonide (Entocort®EC, Uceris™).
- Systemic: prednisolone, prednisone, methylprednisolone.
Immunomodulators (oral and shots)
Maintenance
- 6-mercaptopurine (Purinethol®).
- Azathioprine (Imuran®).
- Methotrexate.
Infusions and shots
Induction and/or maintenance
- Adalimumab (Humira®).
- Infliximab (Remicade®).
- Ustekinumamb (Stelara®).
- Vedolizumab (Entyvio®).
If your child's treatment plan includes infusions, we have an Infusion Center on the 4th floor of the hospital. There, they can receive IVs for their IBD in comfort.
Small molecule (oral)
Induction and/or maintenance
- Tofacitinib (Xeljans®).
- Upadacitinib (Rinvoq®).
Diet and nutrition to help your child's IBD
People with IBD should eat a well-balanced, unprocessed, whole-food diet — in other words, a Mediterranean diet. Special diets can work as the sole treatment for some kids, but we mainly use them with medicines.
Changes to diet and nutrition for kids with IBD include:
- Only EN (as an induction treatment).
- Crohn's disease elimination diet (CDED) — a mix of formula and certain foods.
- Specific carbohydrate diet (SCD) — a diet of whole, unprocessed foods that's low in sugar and lactose and includes no grains.
Managing Your Child's IBD Is Vital
If left untreated, your child's IBD symptoms may get worse and may also cause:
- Poor growth.
- Delayed puberty.
- Increased risk of colon cancer.
- Severe issues that may require a hospital stay.
Even with treatment, your child may need surgery to ease severe symptoms or remove damaged intestine that medicine can't improve.
Self-care is also vital to manage IBD well.
Be sure your child does the following:
- Stays up to date on vaccines, including a yearly flu shot. If immunosuppressed, they should not have live virus vaccines.
- Has a yearly dilated eye exam.
- Has a yearly skin exam (specially if they're taking drugs that have a risk of skin cancer).
- Always uses sunscreen with SPF 30 or greater.
- Has a DEXA scan to keep an eye on bone health. This is crucial if your child has a history of fractures and/or prolonged steroid use.
- Avoids smoking or being around people who smoke.
Going to school with IBD
Your care team will give you a letter to set up a 504 plan with your child's school.
This will allow for special accommodations, such as:
- Stop-the-clock testing.
- A limitless bathroom pass.
- The chance to make up missed homework.
Also, make sure to talk with our social worker about secondary medical assistance insurance. Your child qualifies based on their IBD diagnosis alone.
Download our "Understanding IBD" booklet (PDF).
