Last September marked 8 years since I got my stoma—a milestone that stirs up a powerful mix of emotions within me. It took a full year of mental preparation for me to go forward with the surgery, knowing it was a permanent change that would make me a lifelong ostomate. I immersed myself in information, joined support groups and tried my best to explain it to my young children. But the surgery didn’t go as planned; complications led to two more surgeries within just 20 days, extending my hospital stay from a planned 10 days to 35. My sons, Olivier and Leonardo, were only 10 and 9 years old at the time. When they visited me in the intensive care unit, they were frightened by the sight of machines and tubes everywhere.
This experience taught me just how important it is to educate not only those closest to an ostomate but also broader communities, especially children in schools, about stomas and the realities of living with them. Children are naturally curious, and without the proper information, they might see ostomy as something strange or frightening. School-aged children benefit immensely from learning about stomas and other medical conditions in a way that encourages empathy, understanding and open-mindedness. Such education doesn’t need to be overly detailed, but can cover basic concepts to help normalise ostomies and other medical devices, showing that people who use them lead full, active lives.
When children are educated about topics like stomas, it can also help them to support classmates, teachers or family members who may have one. It reduces the stigma and misconceptions that often accompany medical conditions, helping children see beyond the physical differences. For example, a school programme could explain why someone might need a stoma, what it does and how it helps them. It can also provide a safe space for students to ask questions and express their curiosity without fear of judgement. For children of ostomates, like my sons, knowing more about stomas could help them feel less anxious and more prepared if they need to support a loved one in the future.
Incorporating health education about stomas into school curricula can be transformative, empowering children to approach these topics with respect, empathy and pride in others’ resilience. Teaching students about stomas helps normalise differences and fosters a compassionate, inclusive and informed environment, where differences are celebrated rather than stigmatised.