Why Medicare's Ostomy Supply Changes Concern Cancer Survivors

Ellyn Mantell has lived with an ileostomy for more than a decade, and much of her week is spent on the phone with people who have come through cancer surgery and woken up with a stoma. She mentors patients one on one, runs a support group and serves on the patient advisory board of the United Ostomy Associations of America (UOAA).

Medicare finalized a rule in November 2025 that adds ostomy and urological supplies to its competitive bidding program for the first time. The supplies have been covered under Medicare Part B's prosthetic device benefit, and the rule treats them instead as medical equipment, a change Mantell said puts fitted, single-use products in the same category as a cane or a wheelchair.

Nothing has changed yet for the people who use the supplies. Bidding is set to open in late summer or early fall of this year, contracts would be awarded in 2027, and new pricing would take effect no later than Jan. 1, 2028, followed by a six-month transition period. CMS has estimated it will award about eight national contracts for ostomy supplies, replacing what Mantell said are hundreds of distributors people can order from now.

In an interview with CURE, Mantell described what happens when an appliance does not fit, why switching brands is not a simple choice and what she plans to tell legislators when she goes to Capitol Hill virtually on Sept. 30. This interview has been edited for length and clarity.

What is an ostomy, and why are ostomy supplies fitted to each person?

Mantell: A stoma is a loop of intestine that the surgeon brings through the abdomen. In my case it is on the right side because I have an ileostomy, which comes from the small intestine. When someone has had their colon or rectum removed, it is usually a colostomy, and that is on the left side. Someone with a urostomy can have it on either side, depending on where the surgeon feels is best.

People are very ignorant and do not understand that our supplies are fitted to us. The [Centers for Medicare & Medicaid Services (CMS)] has no understanding that we each need our own supplies. It is not one size fits all. I am not quite 4 feet 11 inches, and one of my friends is 6 feet 4 inches and has an ostomy. We cannot possibly be wearing the same size. It just does not make any sense.

I have a high output pouch because I have lost so much bowel that I have constant fluid. Mine is a foot long and wide, and it has a nozzle. If it had Velcro at the bottom instead, I would sit down and it would flood everywhere. We also wear a wafer that goes right on the abdomen and is cut to the size of each stoma. If it is cut too big, that is where all the leaking will be. Some people cannot use the adhesive at all because they are allergic, so they have to have special wafers.

What can lead to an ileostomy after repeated bowel obstructions?

Mantell: I was coping and living with slow motility, and I had figured out how to deal with it. I became a runner. My food was always portioned out. I knew exactly what I needed to do. I had a hysterectomy in my early 40s, and three months later I developed a spaghetti-like adhesion that strangled my small intestine. I had to have two and a half feet of bowel removed, but it perforated, so I was in the hospital for months. It caused a lot more scar tissue and it damaged all my organs.

Three months later the same thing happened again, from another adhesion, and that started a series of bowel obstructions. Eventually I had my colon removed. They just kept removing pieces of me. Then I had my ileostomy, and I have not had another surgery since. I am so fortunate.

What can happen when an ostomy appliance does not fit correctly?

Mantell: What we are frightened of is improper fitting supplies. The stoma is man-made and it sits on the skin, and that tender abdominal skin was not designed to feel urine and stool, which is very toxic. So there are blisters and terrible pain, and eventually the blisters will open and that toxic urine and stool will enter.

I was working with a [patient with cancer] who had to go to a rehab facility, and the family did not realize that the facility did not have any supplies for her. She was so new that she did not have them with her, so they used a plastic bag with Scotch tape to adhere to her belly instead of ostomy supplies. She became septic and she died. She never even had a chance to fight the cancer.

Even in the best of hospitals, people are sent home without knowing what to do. A wound and ostomy nurse comes to you in the hospital and says, "This is what will fit you," and then you go home and the stoma changes size. That is what happened to a man I met at a UOAA conference who had a urostomy after bladder cancer. His stoma kept getting smaller, so he was leaking around the pouch. He went to the stoma clinic at the conference the next day, and a wound, ostomy and continence nurse fitted him with the proper supply. Every time I ran into him after that, he was so happy. Either no one told him, or he was in a stupor because he did not expect an ostomy.

Can someone with an ostomy switch to a different brand of supplies?

Mantell: Not at all. Typically once you start with a particular brand you stay with it. It is not like, well, I feel like changing lipstick today, so I will just do that. We are terrified of changing anything because of our skin or leaking.

One day I was told I should try a different product, and I did, and I was meeting a friend for lunch. I was waiting for her and waiting, and I could feel my pouch filling, and all of a sudden, as she walked into the restaurant, I looked down and I was covered with stool. I grabbed a napkin and I ran, holding my abdomen. I had my extra supplies, but I still had to put the napkin on top of my pants to hide the stool. I sat there the whole time just fighting tears. My friend kept saying, "Go home, go home," and I said no, we planned this lunch. It was humiliating. Over the years I have looked at myself and said I am never going to be humiliated. I am going to remember how strong I am.

How could Medicare's supply changes affect people living with an ostomy?

Mantell: These are not durable goods. We use our supplies. There are hundreds of supplies and hundreds of distributors now, and Medicare plans to bring it down to maybe four different supplies and four to eight distributors. There are a million of us in this country alone. How are eight distributors going to get us our supplies every month? It is impossible.

It is also robbing Peter to pay Paul. Medicare Part B pays for our supplies, so they will save some money there. But if we get infections in our abdomen, or become septic, or our skin breaks down and we have to be in the hospital with a PICC line, Medicare Part A pays for it. It makes no sense. I do not believe it was malicious. I think they did not think it through.

What do ostomy advocates want lawmakers to understand about supply access?

Mantell: The best way I explain why this is so important is with glasses. If your eyes started to not function well and you went to your eye doctor, and the doctor says, "I have the perfect prescription for you, so you will see 20/20," and you say, "Great, hook me up," and then the doctor says the government only allows us to have four lenses, and since you do not fit into any of those four, there is nothing we can do. Everyone relates to that. Why would I be denied a prescription that I need?

We need legislators to recognize that we are constituents and we are people, and if we are going to do our best to get out in the world, we have to have our supplies. The minute those supplies end, we will not be able to leave our bathroom. I mentor two high school students every week and I teach at Florida Atlantic University, and I would wind up stuck in my house because I do not have the right supplies. We have come so far. There are people from 20 years ago who struggled to get the proper supplies. We now have them. Why take them away?

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