Ellyn Mantell of Boca Raton has had 23 abdominal surgeries, and an ostomy for 12 years. An ostomy is a surgically created opening in the abdomen that allows stool or urine to exit the body into a pouch. It's necessary when the body's natural function is impaired from injury or illness.
The equipment used by ostomates, as they are known, must be fitted specifically to their measurements and needs, to prevent leaking, infection, skin irritation, and more.
As Mantell said, ostomy supplies can never be "one size fits all."
"I think I can help you to understand it best when I say that I am 4 foot 11 if I lie, and I wear a very long pouch because I've lost so much of my small intestine. A friend of mine is 6-foot-6 and his pouch is half the size of mine," she said.
But that customization may be about to end. The Centers for Medicare and Medicaid Services recently ruled that suppliers of ostomy and other medical products must compete on price, starting in January 2028. Some ostomates, such as Mantell, believe that this will cause the choice and quality of supplies to go down.
"There will be a few choices. They will either fit or they won't. And that will be the end of me being able to tell a new ostomate, don't worry, you will get through this. Your life will be better," she said.
Mantell,77, says she is grateful to live a long and active life thanks to her ostomy. But she fears this rule change will end that.
"People are living longer and better lives because of it. But it's a two-pronged situation because without the proper supplies, our lives are in danger. Our skin breakdown, sepsis can lead to death. We've already fought back from the abyss. We've already been through hell. This is an easy fix," said Mantell.
The Centers for Medicare and Medicaid Services did not respond to a request for comment.
For more information on this rule change, go to Ostomy.org.
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