Inflammatory Bowel Disease (IBD)

What Causes IBD?

The exact cause of inflammatory bowel disease is unknown. But we know it results from an impaired immune response that damages the intestinal lining. Contributing factors include: 

• Environmental factors: Certain foods, medications (like antibiotics) and other exposures can play a role. However, a poor diet alone does not cause IBD. 
• Genetics: A family history of IBD increases risk, but many patients with IBD do not have relatives with IBD.
• Gut microbiome: Bacteria and other microbes in the digestive system that support digestion and immune function play a role.

What Are the Signs of IBD?

Inflammatory bowel disease affects each child differently. IBD symptoms can range from mild to severe, depending on where the inflammation occurs in the digestive system.

Digestive IBD Symptoms 

If your child has IBD, they may:

• Have diarrhea, sometimes with blood
• Feel like they can't completely empty their bowels 
• Need to use the bathroom suddenly and urgently

Growth and Development of IBD Symptoms

IBD can affect your child’s growth and development, even without severe digestive symptoms. Children may experience:

• Delayed puberty 
• Slower-than-expected height and weight gain

How Is IBD Diagnosed in Children? 

Diagnosing IBD in children involves a combination of clinical evaluation, laboratory tests, imaging studies and endoscopy with biopsy:  

• Laboratory tests: Your pediatrician may order a stool test called fecal calprotectin to measure inflammation in the intestines. This test is just a screening tool. It doesn’t confirm IBD but can indicate the need to consult a pediatric gastroenterologist. Your pediatrician may also order blood tests.
• Imaging: Techniques such as CT scans and MRIs can help assess inflammation in the digestive tract. Lurie Children’s also offers bedside intestinal ultrasound, a cutting-edge, noninvasive method to visualize the bowel wall and blood flow. 
• Endoscopy with biopsy: This method involves using a camera to visually examine the intestines and do a biopsy. The biopsy allows doctors to analyze tissue samples for signs of inflammation and damage.

Early diagnosis and proactive treatment are essential for managing IBD effectively and helping children live long, healthy lives.

How Is IBD Treated in Children?

The goal of treating inflammatory bowel disease in children is to reduce inflammation, improve quality of life, and support healthy growth and development. Lurie Children's focuses on treating the whole child. This approach includes: 

• Individualized treatment plans tailored to meet each child’s specific needs
• Early, targeted treatments to manage the disease before it becomes worse
• Precision medicine, which selects therapies based on the child’s circumstances and genetic makeup; may be especially important for children 6 years old or younger

Medical Therapies

Your child’s doctor may prescribe one or more of these medications commonly used to control IBD: 

• Anti-inflammatory drugs, such as corticosteroids, to reduce inflammation
• 5-Aminosalicylates, such as mesalamine, sulfasalazine or balsalazide, for ulcerative colitis
• Immunomodulators, which suppress the immune system to prevent flare-ups
• Antibiotics that treat infections such as C. difficile, which are more common in people with IBD, or adjust gut bacteria balance
• Biologics or advanced therapies: (therapies targeted at a specific part of the immune system) such as infliximab (Remicade^®), adalimumab (Humira^®), vedolizumab (Entyvio^®), ustekinumab (Stelara^®), risankizumab (Skyrizi^®), guselkumab (Tremfya^®), mirikizumab (Omvoh^®) or upadacitinib (Rinvoq^®)

Nutritional Therapy

Good nutrition in managing IBD is crucial. Children may require specialized diets or supplements to address deficiencies and support growth. Some children benefit from exclusive enteral nutrition — a liquid diet that relieves symptoms and heals the intestine even more effectively than steroids. Our expert dietitian team may also recommend solid-food diets such as the Crohn’s disease exclusion diet (also called CDED).

Living With IBD

Although IBD does not currently have a cure, early diagnosis and treatment help children live long, healthy, full lives. Children with IBD can participate in regular childhood activities, including school, travel and sports.

Untreated, however, chronic inflammation can lead to complications, including:

• Scar tissue: This can result in a narrowing of the intestines, which may require surgery. 
• Infection: Inflamed bowel can create tracts in the surrounding tissue (fistula) and lead to infection/abscess
• Higher cancer risk: Long-term inflammation slightly raises the risk of colon cancer, but this is rare in children. 

IBD Program at Lurie Children’s 

At Lurie Children's Inflammatory Bowel Disease Center, our mission is to treat your child’s illness and support your whole family. We provide comprehensive diagnosis and treatment plans for children with IBD, including ulcerative colitis, Crohn's disease and very-early onset IBD (for those diagnosed at age 6 or younger). Our specialized team includes social workers, psychologists and others dedicated to providing care to children with IBD

Every year, the full IBD team hosts “Spring into Remission.” Spring into Remission is a free symposium for patients and families cared for at Lurie Children’s. They get up-to-date information on diet, medical therapy and hear shared patient stories. Patients can win academic scholarships, make healthy foods, win IBD jeopardy and collect prizes. Learn more at: Spring into Remission.

Learn more about our IBD program