The Cost of Silence Around Ostomies

I didn't want an ostomy.

I fought it for months. I was scared of what it meant. I was scared of what I would lose.

I'm still figuring some of that out.

But here's what I know now: the silence around ostomies costs more than the surgery ever did.

What Silence Actually Costs

An estimated 725,000 to 1 million people in the United States live with an ostomy. About 100,000 ostomy surgeries happen each year.

You wouldn't know it.

Sixteen percent of ostomy patients report stigmatizing sentiments from their own medical clinicians. Disgust. Visible signs of disgust. Negative treatment regarding the ostomy.

When your doctor can't hide their discomfort, what does that teach you about your body?

It teaches you to hide.

More than half of patients report depression following stoma surgery. Seventy percent are dissatisfied with sexual activities. The social subscale scores the lowest among quality of life measures because physical and psychological disorders from a stoma gradually reduce confidence and shrink social relations.

The silence creates isolation. The isolation deepens the silence.

The Silence I Carried

I competed through three years of perianal Crohn's disease before my colostomy. Abscesses. Fistulas. Multiple surgeries.

I won double gold at the New York City Open one week after my Mayo Clinic diagnosis.

I kept playing because I didn't know how to stop. I kept quiet because I didn't know what to say.

There were nights when I prayed for pain to stop. I didn't tell anyone because I didn't want to look weak. I was already ashamed of so much.

Patients with early-onset colorectal cancer who have ostomies tend to conceal their inner feelings with silence. Self-imposed isolation becomes a strategy for avoiding disclosure.

I understand that now.

When you can't find anyone talking about what you're going through, you assume you're supposed to stay quiet too.

What Breaking Silence Looks Like

Ten weeks after my colostomy, I competed in Dubai. I won.

Seven months post-ostomy, I competed in Malaysia.

I'm one of the only professional athletes in the world competing full-time with an ostomy. That matters because visibility matters.

But visibility alone doesn't break silence.

Breaking silence means talking about emptying your ostomy bag because it's full. It means talking about changing your bag because the adhesive is coming off or your skin is burning. It means talking about putting stoma powder around broken down parts of your skin.

It means being honest about the mornings when you wake up extra early because you have output to manage before you can start your day.

This is the reality. It's not inspiring. It's not tragic. It's just what happens.

The Real Cost of Staying Silent

When patients receive proper standards of care, quality improves and costs decrease. People facing ostomy surgery become better informed. Fears and stigma reduce. More lives get saved.

But that only works if people talk.

And most people don't.

The culture around ostomies defaults to secrecy. People learn to manage their supplies quietly, avoid bringing it up, keep it contained to private spaces.

I understand the instinct. When 16% of your own doctors show disgust, you learn to keep it to yourself.

But that silence has consequences.

Educational programs exist. Support resources are available. Better outcomes are possible.

But stigma and shame keep people from accessing what could help them.

The gap between what's available and what people actually use stays wide because silence fills that space.

What I'm Learning

I kept pretending nothing was wrong because the truth scared me. I was more afraid of quitting than I was of collapsing.

The colostomy changed that. Almost immediately, the pain eased. I could move again. I could train without fear.

But I still carried shame about it. I still wondered if people would see me differently.

Then I started talking. Not performing. Not inspiring. Just talking about what it's actually like.

People reached out. They said they felt less alone. They said it gave them language for their own internal mess. They said it gave them permission to be honest about their own pain.

That's when I understood: silence protects no one.

It doesn't protect your dignity. It doesn't protect your privacy. It doesn't protect you from judgment.

It just keeps you isolated.

The Way Forward

I'm not saying everyone needs to share everything. I'm not saying privacy doesn't matter.

I'm saying the default shouldn't be silence.

When 16% of patients experience clinical stigma from their own doctors, something is broken. When more than half report depression after surgery, something needs to change. When the social quality of life scores lowest because people withdraw from relationships, we're failing each other.

Breaking that silence starts small.

It starts with one person saying: this is hard, and I'm figuring it out.

It starts with doctors treating ostomy patients with the same respect they give everyone else.

It starts with conversations that don't require inspiration or tragedy, just honesty about what's real.

I'm still learning how to live with my ostomy. I'm still figuring out what my body can handle. I'm still working through what changed and what stayed the same.

But I'm not doing it in silence anymore.

And that makes all the difference.