Why was this study done?

Depression is the number one health problem in adolescents, and by age 18, 20% of adolescents will experience a major depressive episode. For kids and teens with inflammatory bowel disease, the risk for depression is high. One in three adolescents struggle with some form of depression. Depression is linked to (associated with) difficulty adhering to medication, worsened disease activity, and higher healthcare costs. Yet, little is known about depression screening practices in pediatric IBD care. An improved understanding of current screening practices is an important step toward promoting mental health in pediatrics.

Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.

It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.

I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?”