Why Ostomy Supplies Are Not One Size Fits All for Cancer Survivors

Bern Pollock had been cycling, swimming, doing yoga and working out three times a week when he saw blood in his urine after a gym session. Weeks later, in April 2024, he was diagnosed with stage 2 bladder cancer. After chemotherapy and surgery to remove his bladder and prostate, he now lives with a permanent urostomy (an opening on the abdomen that drains urine into an external pouch), which he manages with a combination of products he built over two years with his doctor and an ostomy nurse.

Pollock, who lives in St. Petersburg, Florida, spoke with CURE about learning to care for his ostomy, why the supplies he relies on cannot be swapped out and why he is concerned about Medicare's plan to include ostomy and urological supplies in its competitive bidding program.

This interview has been edited for length and clarity.

CURE: What led to Bern Pollock's stage 2 bladder cancer diagnosis?

Pollock: I've always been very physically active: yoga, cycling, working out three times a week, swimming. One day, I had just finished up at the gym, and when I went to use the urinal, a very large spurt of blood came out. When I saw that, I said, "This doesn't look good. Blood does not belong in that system." I never had a urologist prior to that, and that was my very first symptom. I was diagnosed within about two weeks with stage 2 bladder cancer that had gone through the bladder into the surrounding muscle, and they told me that my bladder would need to be removed, which was shocking to me.

What did treatment for stage 2 bladder cancer involve?

I was referred to an oncologist who placed me through a regimen of four chemotherapy treatments that took two months. I was told that chemotherapy was very strong, and normally they maybe would have used a lesser chemo, but they felt like I was strong enough to tolerate it. At the time, I was 68. After the chemotherapy, they told me there was no more cancer in my system. However, they told me the bladder still needed to come out because it was not functioning properly. I was urinating maybe three, four times an hour, and a lot of times it was very painful. And I was told that the cancer could come back in the bladder or spread further.

How did bladder cancer surgery lead to a prostate cancer diagnosis?

After a month off, I had surgery with a very fine doctor [NAME/INSTITUTION TK], and he removed the bladder. I had an ileal conduit [a passageway made from a short piece of intestine that carries urine from the kidneys to an opening on the abdomen called a stoma] installed. In addition to the bladder being removed, my prostate was removed. I was told after everything was biopsied that, unfortunately, I had prostate cancer as well, but that had never been picked up from prior testing because my PSA [prostate-specific antigen] levels were always 0.4. Everybody was so pleased. They said, "You had two surgeries for the price of one."

After a six-hour surgery, I woke up, and at that point, I became an ostomate. Since I no longer have a bladder, all the urine goes through the ileal conduit into the bag. This is a permanent ostomy.

What are the first weeks like after ostomy surgery?

The first few weeks were a learning experience. I was sent home from the hospital with a few sample items that were being used on me and taught to me at the hospital, and then I had to learn it on my own. I did have a nurse that came one time to assist, but unfortunately, it was a language communication problem. I learned everything on my own and figured it out.

There are three different types of ostomies. I have an ostomy for urine, so I have a urostomy. We all have one thing in common: a stoma and the need for pouching equipment. But everybody has a different situation.

Why does finding the right ostomy supplies take trial and error?

I worked with different medical suppliers who sent me samples to try out, and I learned that some adhesives work well, some don't. I have close to 10 different products from all different manufacturers that I use. It is not a situation of one size fits all. I worked with an ostomy nurse, my urologist and the different manufacturers to figure out what would work best for me.

When you have leakage, or you wake up and your bed is wet, or you go out to a restaurant and you have not gotten a proper seal of the prosthetic to your skin, when you get up, you're wet. You learn very quickly through trial and error. I'm still learning.

How can people with an ostomy protect the skin around a stoma?

When I first had the surgery, my skin around the stoma was very raw and red and healing because it had sustained trauma. The flange [the part of the pouching system that attaches to the skin] has glue on the back, and you can't just put that on top of raw, red skin. I was able to build what is called a crust using different powders and sprays that I could then apply it to. Some people have problems with the brand I use because their skin doesn't adapt well to it, so they have to try different things, because different manufacturers use different colloidal combinations.

When I first got the pouching system, I was playing games with myself: "Let me see if I can go five days." Unfortunately, urine is very damaging to the skin if it stays on too long, so that does need to come off every three days.

What advice does Pollock have for people preparing for ostomy surgery?

I belong to a support group, and there's somebody that's having surgery coming up, and I have worked with this lady. Her anatomy is different from mine, but in the end, she's going to have a pouching system, and I went through that. I wish somebody would have gone through that with me and said, "I've tried these. These work for me. Try this first, and maybe switch out."

Can people with an ostomy stay active and travel?

A friend said to me that technically, once you've lost a major organ and you're using prosthetic equipment, you're disabled under the law. I don't want to live in that mindset. However, I've come to accept that that's what it is, and I need to be careful doing certain activities. But I'm able to ride my bicycle. I'm able to go into the swimming pool. I found a swimsuit online that covers everything, so I don't feel self-conscious. I'm not surviving. I'm thriving with it.

I tend to go on a lot of cruises because they're very simple. I live right across the bay from Tampa, and there's a lot of ships always leaving out of that port. I've also developed a little system in my car with products [ConvaTec] sells, so I can drive for hours without having to stop and go to the bathroom.

Why does switching ostomy supply manufacturers matter for patients?

I've had two different suppliers. The first was recommended by the hospital and later was switched out for insurance reasons, which was fine. The manufacturers are the most important piece for me. I use Hollister products, [ConvaTec] products, a couple of Coloplast products and products from 3M and McKesson, because some things did not work for me. My skin was allergic to it.

If I had to switch manufacturers, that would be very difficult. What I'm currently using is medically appropriate. It's something that I've curated over two years with a doctor and an ostomy nurse. I don't want to be in a situation where I'm using something else and then I have skin problems, which would maybe require going back to the doctors, or, if it's a severe infection, being hospitalized. I need the continuity and the consistency of what I'm using in order to maintain my health and my independence in the community. I'm involved in a lot of volunteer work and social organizations to help other people, and that's part of my thriving. To have to switch would be like a part-time job. I would be starting over again.

How could Medicare competitive bidding affect people with ostomies?

I have Medicare, and I am concerned about that. Right now, everything is working fine. The ostomy community is a very small community. It's about 750,000 people in this country, and our items are geared specifically for us. This flange comes in maybe 50 or 100 different sizes and styles. These products are not interchangeable. When I take these products off, this is medical waste. This is not a cane, or a wheelchair, or a durable appliance. This is a prosthetic that gets attached to our skin.

I would tell a lawmaker that they should not put us in a situation where there's competitive bid and they're reducing the manufacturers and suppliers we can use. I need to maintain access to medically appropriate equipment at all times from people that I trust. If manufacturers get pushed out of the system for a low-bid competitor, I don't know what the quality of that equipment is going to be. The equipment has to remain in place, secure, in order for us to be productive members of society, and that's what we want to be.

What does Pollock want Medicare and lawmakers to understand?

I feel it's important for Congress or Medicare or CMS [the Centers for Medicare & Medicaid Services], whoever's dealing with these issues, so I need to speak out frankly. I'm an end user of these products. I've gone through a big experience, and I'm still here. I've come out the other side, and I don't want to go back and start having problems now. This is not one size fits all. This is something that has been curated by me and my doctor and an ostomy nurse, and that's what I want people to know.

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