Mind the Gap: What Doctors Don’t Always See

This week on Leaks, Laughs & Life with a Urostomy, we’re talking about the gap between what doctors know medically and what patients learn by actually living with a urostomy every single day.

Doctors understand surgery, anatomy, labs, and complications. But patients learn the real-life side of this journey through experience... the leaks, skin irritation, product failures, anxiety before appointments, travel stress, and all the small details that never seem to make it into a chart.

In this episode, I share my thoughts on self-advocacy, journaling, communicating with providers, and why lived experience matters in healthcare conversations. I also share a moment with my surgeon after she flipped through my book Leaks, Laughs & Life with a Urostomy: The Handbook and realized there were still things about daily urostomy life she had never considered before.

This is not about “patients versus doctors.” It is about bridging the gap between clinical knowledge and real-life experience so patients feel more seen, heard, and understood.

You can find my book, journal, podcast episodes, and additional resources at LeaksLaughsLife.com.