Fourteen years ago, I joined the club no one plans to be in—a club with a membership card called “life with a pouch.” At first, I didn’t know what to expect, but I quickly discovered something invaluable: the monthly ostomy meetings. Month after month, I’ve sat with fellow ostomates, swapping stories, trading tips, and laughing about the little quirks that only we truly understand. I’ve learned more from these gatherings than I ever imagined, and through the visitor program, I’ve had the privilege of helping others begin their own journeys.
Ostomy life has its ups and downs. There are easy days, and yes, there are days that test your patience, e.g., blowouts, pancaking, overcapacity moments you’d rather forget. But I’ve learned to meet these challenges with humor and resilience. When “pouch weariness” hits, you’ll often find me on the golf course or playing pickleball, shaking off the frustration and reminding myself that life is meant to be lived.
Over the years, I’ve built my own ground rules: seek out tips from others, ask the WOC nurses health questions, listen to those with more experience, and never forget to have some fun along the way.
I’ve learned that nutrition matters. First by hydrating with at least 50 ounces of water a day, finding the right probiotics, and making sure I’m getting good absorption.
Travel? That’s just another adventure. I always pack my kit, grab an aisle seat, carry my UAOO travel ID card, and drink extra water to beat the dry airplane air.
Living with an ostomy “in style” takes practice, patience, and a good sense of humor. It’s about finding your own rhythm, being prepared for surprises, and embracing the life you have—pouch and all. My story isn’t about what I’ve lost; it’s about the experiences I’ve gained and the people I’ve met along the way.
And if there’s one thing I know for sure, it’s that this life can still be full of activity, connection, and joy.