I am one in a million. Twelve years ago, after a lifetime in and out of emergency rooms and operating rooms, I underwent my 23rd abdominal surgery. That surgery, an ileostomy, saved my life. It also changed it forever.
Nearly one million people in the United States live with an ostomy, like I do. They show up every day despite extraordinary physical and emotional challenges.
A new federal rule could amplify those challenges -- and even put our lives at risk. The Centers for Medicare and Medicaid Services is considering policies that would restrict access to the pouching systems we depend on -- prioritizing cost over function, fit, and medical necessity.
Let me be clear about what that means.
For many of us, it takes months to find the right system, one that protects fragile skin, prevents painful and humiliating leaks, and allows us to return to work, relationships, and a sense of normalcy. These are not interchangeable supplies. They are individualized, essential prosthetic systems.
Today, I live without a colon and with significant portions of my small intestine removed. I have survived peritonitis, pancreatitis, organ damage, multiple hernia repairs, countless infections, and more procedures than most people will face in a lifetime. Even routine bloodwork is no longer routine.
My fellow ostomates have similar stories to tell. And soon, Medicare will only contract with companies that offer the lowest prices for ostomy supplies as part of a single-minded effort to cut federal spending. Nevermind that this move will make it harder for ostomates like me to secure access to the specific products that work best for our bodies.
This is not hypothetical. This is our looming reality.
Would we ask a person with a limb amputation to use an ill-fitting, painful prosthesis simply because it costs less?
I have seen what that looks like. My uncle became a double amputee at age 39. The prosthetics available at the time caused such pain that he chose a wheelchair rather than endure the physical and emotional toll. Today, advancements have made prosthetics more functional and humane.
Why would we move backward for ostomates?
Implementing programs that threaten access to appropriate pouching systems does not save lives or improve them. It risks infection, isolation, loss of employment, and a profound erosion of dignity. It confines people to their bathrooms instead of allowing them to contribute meaningfully to society.
On paper, I should be sitting on the sidelines of life. But I am not. I am living fully, purposefully, and in service to others.
Over the past 12 years, I have dedicated my life to supporting others on this journey. I am an author, advocate, and speaker. My ability to continue this work depends on having the right medical supplies.
This is not about convenience. This is about humanity.
I ask those at CMS to consider the real impact of their decisions. Look beyond the spreadsheet. Understand the lived experience of the people affected.
We are not numbers. We are not line items. We are people fighting every day to live fully. We deserve dignity, respect, and access to the tools that make a full life possible.
Officials at CMS have the power to protect that. My fellow ostomates and I hope they'll make the right decision -- and halt their misguided effort to disrupt access to the medical supplies we depend on.
Ellyn Mantell is an ostomate, advocate, and renowned motivational speaker in the ostomy community and author of So Much More than My Ostomy: Loving My Perfectly Imperfect Body and The Best We Could: Healing from Intergenerational Trauma.
