Life With an Ostomy After Colorectal Cancer Surgery

For many people diagnosed with colorectal cancer, surgery can bring lifesaving treatment but also lasting changes. Approximately one-third of colorectal cancer survivors receive a temporary or permanent ostomy as part of their care, making adjustment to life with an ostomy bag an important part of recovery and long-term quality of life.

In this conversation with CURE, Michael Holtz shares his personal journey after unexpectedly receiving a permanent ostomy during surgery in 2012. From early challenges in the hospital to navigating travel, advocacy and public misconceptions, he discusses how education and honest conversations can help patients continue living full, active lives.

Holtz is a content creator, storyteller, author, blogger, colorectal cancer survivor and advocate from Knoxville, TN.

CURE: Can you share your personal experience adjusting to life with an ostomy bag?

Holtz: I got my ostomy on August 10, 2012, during surgery to remove a cancerous tumor in my rectum. Getting a permanent ostomy was a surprise. My surgeon had talked for weeks about going in, getting the tumor and being able to put me back together. On the morning of surgery, he drew two circles on my abdomen; if the ostomy was on the right, it would be temporary, on the left if would be permanent. I

woke up from anesthesia, and a nurse inadvertently told me the ostomy was permanent. My surgeon was more disappointed than I was about my ostomy. Truly, I was grateful to have survived the surgery.

My surgery was on Friday. The nurses on my floor weren’t knowledgeable about ostomies or correct appliances, so I experienced blow outs every time my ostomy expressed itself. I had a sense of panic and dread about going home because it seemed I was going to make a mess every time.

Fortunately, two ostomy nurses came to my room on Monday. Before she introduced herself, Annie said, “This does not change your life in any significant way. You can still run, swim, bike, walk, all the things you do.” Then, over the course of the next three days she and the other nurse, Jordana, prescribed correct appliances for my body, and then walked me through how to change them out.

What was the most challenging aspect of learning to live with an ostomy bag, and how did you overcome it?

I traveled a lot for work at the time. The idea of using a drainable pouch on the road gave me nightmares. First, I’m a big guy, so sitting on the toilet to let the pouch drain between my legs was almost impossible. Second, that would mean kneeling over a toilet to drain a pouch, which wouldn’t be great in airports. To avoid all of that, I use a two-piece system with disposable pouches. It’s been the perfect solution for me.

I’ve also learned what foods I can and cannot eat before I travel. Changing pouches in an airplane toilet is a challenge because there isn’t a lot of space, so if there is anything I can do to avoid that, I try to do it.

What advice would you give to newly diagnosed patients or caregivers navigating this transition?

In an ideal world, every newly diagnosed patient or caregiver would have access to an ostomy nurse, but I know that isn’t reality. A friend of mine, who has since passed from ovarian cancer, called me in a panic the night before her surgery. She knew she would wake up with an ostomy, but she got no information about how to manage life with an ostomy, and she had no idea what her body would look like when surgery was over.

I rushed to her bedside and showed her my appliance. Then I showed her the pieces of my appliance and how they fit together. Seeing an ostomy appliance up close eased her mind.

I am always willing to talk to patients who are about to get an ostomy. It is life-changing, but it isn’t a barrier to living life. I tell people the same thing Annie told me, “This doesn’t change your life in any significant way.”

If an ostomy nurse isn’t available at a patient’s hospital, I always recommend UOAA as a resource. We also have an ostomy specialty shop in Knoxville, which can also be helpful for people who want face-to-face conversations.

How has your experience with advocacy shaped your perspective on ostomy care and patient education?

It saddens me that access to trained ostomy nurses isn’t universal. That’s an issue I would absolutely advocate for. I have always been open about my ostomy life: blowouts, cleanups, carrying a go-bag everywhere, etc. It helps people understand that life for me is different, but still good.

I have been open about my cancer experience and ostomy life since my diagnosis in 2012. I share on social media after I’ve had a blowout (I missed a flight once because I had a blowout in the car and had to go back home), or share the weirdest place I’ve had to dispose of a colostomy bag (on an interstate shoulder while riding with colleagues to the airport in Baltimore), and jokes other people make about my ostomy.

I was at the start line for a Thanksgiving 5K, and a friend needed to use the port-o-let, and the weather was frigid. He said, “This is where I wish I was in your situation!” Like having cancer, my being open about my ostomy helps others understand and be comfortable. 

I’ve only had one truly negative experience in the 14 years I’ve had an ostomy. I was staying at a hotel in Quantico, Virginia, on a work trip a few years ago. When I checked out, the manager approached and told me a situation had arisen that meant I could no longer stay on their property. “The situation” involved the discarded ostomy bags in the bathroom trash can. “There are feces in the waste basket,” she said. I explained to her why that was, and how I peel off a used pouch, then place it in an opaque bag to go into the trash can.

The only way anyone would know what was in the bag was if they opened it. Once I showed her that I have an ostomy, she backed down, but I won’t stay on that property again.

What are some common misconceptions about living with an ostomy bag that you would like to address?

I think a lot of people fear getting an ostomy because they worry about smells and leaks. It would be dishonest to say my ostomy never smells or I never have a blowout – it happens. But it’s rare. And when it does happen, I share about it on social media. It’s important for me to show people that even when ostomy life is challenging, we adjust our capes and keep going.

People without ostomies likely know someone with an ostomy, but they never talk about it. I choose to be open about my experience to demystify ostomy life. I can be angry about experiences, like the one I had at that hotel, and then make fun of myself for having a “code brown” moment the next.

Transcript has been edited for clarity and conciseness.

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