Know Your Rights: What Good Ostomy Care Should Look Like

When you get an ostomy, no one hands you a manual for every situation you’re going to encounter.

You learn how to change your bag. You learn how to empty it. Eventually, you figure out how to eat, sleep, travel, exercise, and get back to living your life.

Over time, you can get pretty good at taking care of yourself.

But there’s another part of living with an ostomy that I don’t think we talk about enough: knowing your rights and understanding what good ostomy care should look like.

I’ve had an ileostomy for five years. I’ve been through cancer, multiple surgeries, hospital visits, and four intestinal blockages. One of the biggest things those experiences have taught me is that you have to become an advocate for yourself.

Nobody is ever going to know your ostomy—or your body—as well as you do.

There Is an Ostomy Bill of Rights

The United Ostomy Associations of America (UOAA) created an Ostomy and Continent Diversion Patient Bill of Rights to help people understand what they should expect from quality ostomy care.

It’s important to understand that this isn’t itself a legal document. Rather, it provides a framework for what good care should look like. There are also local and national laws that may provide legal protections in specific situations.

And good ostomy care should never amount to: Here’s your bag. Good luck.

Before leaving the hospital, you should receive information about caring for your ostomy, changing your appliance, and taking care of yourself at home.

Just as importantly, that care shouldn’t end when you walk out the hospital door.

Your Ostomy Will Change

Our bodies change after surgery.

You might gain or lose weight. Your stoma may become larger or smaller. Its appearance can change. Your pouching needs may change along with it.

When that happens, you shouldn’t have to figure everything out alone.

I’ve been fortunate to have a wound, ostomy and continence nurse named Mariana who has been an incredible resource throughout my journey. I saw her after leaving the hospital and returned several times when different issues came up.

There’s tremendous value in having access to someone who works with ostomy patients every day. A general doctor or nurse may be excellent at what they do, but specialized ostomy experience can be invaluable.

If you’re hospitalized for another reason, ask whether a wound and ostomy nurse is available. Sometimes you have to be the person who asks.

You Have to Learn to Speak Up

This is something I learned through experience.

It can be easy to defer to medical professionals. But receiving good care also requires communication, and sometimes that means speaking up.

During my four intestinal blockages, I ended up in emergency rooms and hospitals where the doctors and nurses weren’t necessarily ostomy specialists. They were treating a wide variety of patients.

That meant I had a role to play too.

I could explain my ostomy, provide information about my history, and even bring my pouching system so the staff could understand what I was dealing with.

Self-advocacy doesn’t mean assuming you know more than your medical team. It means recognizing that you bring important information to the conversation because you live with your ostomy every day.

Know Your Rights Outside the Hospital

Eventually, we return to everyday life: work, relationships, exercise, travel, and everything else we were doing before surgery.

Our needs don’t disappear when we leave the hospital.

Bathroom access is a great example.

With an ostomy, you don’t always control when your pouch fills or when a leak happens. Sometimes you need a bathroom immediately.

UOAA offers a communication card that can be carried physically or kept on your phone. It helps explain your medical need without requiring you to have a lengthy conversation during an urgent situation.

I actually carried a similar card for years when I had colitis. When you urgently need a bathroom, you don’t necessarily have time to explain why you need to be next in line.

Understand Workplace Protections

Having an ostomy doesn’t mean you can’t work, and it doesn’t mean you should automatically be treated differently because you have one.

UOAA provides information about workplace discrimination and protections, including resources related to the Americans with Disabilities Act.

I personally don’t go through life thinking of myself as disabled. But there can be circumstances where having an ostomy significantly affects what I need.

That’s why it’s worth understanding which protections may apply to your particular situation.

Your Supplies Aren’t Optional

Pouches, barrier rings, adhesives and other ostomy products aren’t luxuries. They’re essential medical supplies.

According to the information discussed by UOAA, Medicare, Medicaid and many private insurers provide some level of ostomy supply coverage.

If you encounter a coverage problem, don’t automatically accept the first “no.”

Ask questions. Find out why something was denied. Research your coverage and use organizations such as UOAA to better understand your options.

For someone like me with a permanent ileostomy, supplies are going to be part of my life permanently. Making sure I have reliable access to them matters.

Knowledge Is Part of Taking Care of Yourself

If you have an ostomy—or you’re preparing to get one—I encourage you to learn about UOAA’s Bill of Rights and the other resources available to the ostomy community.

Because the more you know, the better equipped you are to advocate for yourself.

Having an ostomy changed my body.

It didn’t take away my voice.