When IBD is diagnosed very early in life

Noah was only 1.5 years old when he first began exhibiting symptoms of IBD. His original doctor brushed it off as acid reflux. By the age of 2, Noah was hospitalized as failure to thrive. A new set of doctors began to track his symptoms and use pill cam endoscopy to track an area of concern. He continued experiencing severe stomach pain, along with bouts of diarrhea and constipation throughout his early years. The summer before his sixth birthday changed everything. Noah underwent a push endoscopy where Crohn’s disease was confirmed. 

Sophia began having blood in her stool around six months of age. Her doctor thought it was attributed to milk protein allergy, a common condition in infants, and advised a change in formula and restricted diet. By 15 months of age, she had gained very little weight and had not grown much in height, was a picky eater, and her stools continued to have blood mixed in them. She was referred to a pediatric gastroenterologist for evaluation, found to have anemia, and underwent endoscopy and colonoscopy which demonstrated inflammation throughout the colon consistent with IBD.

Although IBD is commonly diagnosed between the ages of 15-35, there has been an increase in children like Noah and Sophia being diagnosed even earlier in life. Known commonly as very early onset-IBD (VEO-IBD), this subset of patients is diagnosed with IBD at 6 years of age or younger has grown dramatically over the last several decades. Little is known about the disease course or progression throughout life when they are diagnosed at such a young age. 

A recent study published in Inflammatory Bowel Diseases looked at “The Unique Disease Course of Children with Very Early Onset-Inflammatory Bowel Disease.” With support from the Foundation’s Litwin IBD Pioneers initiative, the authors of the study sought to determine whether VEO-IBD is associated with more severe disease than older pediatric patients. They defined severe disease as an increased rate of surgery and persistent growth failure. 

The study followed 971 patients with IBD at the Children’s Hospital of Philadelphia from three groups:

1. 229 patients with VEO-IBD, or IBD diagnosed at 6 years or younger
2. 221 patients diagnosed with IBD between 6 and 10 years (intermediate onset)
3. 521 patients diagnosed with IBD between 10 and 18 years (older onset)

The study found that patients with VEO-IBD, as compared to intermediate or older onset IBD, can have a more severe disease course requiring increased surgical interventions and poor growth. Additionally, VEO-IBD patients are more likely to not respond to conventional therapies. Below is a summary of the study’s findings:

• More than half of the VEO-IBD patients were diagnosed with Crohn’s disease 
• 45% of VEO-IBD patients presented with disease in the colon, whereas older children were more likely to have disease in the small intestine and the colon
• The average number of surgeries per patient was significantly higher among children with VEO-IBD (1.5 surgeries per patient)
• Patients with VEO-IBD underwent more diverting ileostomies and colectomies and fewer ileocecectomies as compared to older children with IBD, highlighting the differences in these two groups
• Indications for surgery in VEO-IBD patients included severe disease, medication failure, growth failure, perianal disease, and rarely narrowings (strictures) in the colon or colonic perforation
• More VEO-IBD patients failed infliximab (Remicade) and adalimumab (Humira) within 1 year after starting the medication
• Patients with VEO-IBD had more hospital readmission and longer hospital stays

Overall, the study shows the need for more effective and targeted therapy as early as possible when treating patients with VEO-IBD. The Foundation is committed to finding new and better approaches to treating our most vulnerable patients, and the findings of this study demonstrate why we need to prioritize that even more.

Through our Pediatric RISK Stratification Study, we are working to develop a pediatric risk diagnostic tool that could use biological signatures as biomarkers to help clinicians tailor medical treatment to the individual characteristics of each patient, including biologic therapy, at the time of diagnosis. The hope is that this will allow treatment decisions to be made as aggressively, or non-aggressively, to prevent the complications that pediatric patients experience more often. 

Rebecca Kaplan is the Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation and the caregiver of a Crohn's disease patient.