The Reality of Life with an Ostomy: 9 Ostomates Share Insights, Victories, and Advice

Edited by Cecelia Bialas*

October is Ostomy Awareness Month, a time to share our unique stories, take comfort in the more common parts of ostomy life — the triumphs, challenges, and stoma noises along the way — and provide encouragement to those considering surgery. The ways by which we arrive at an ostomy are nearly as varied as there are characteristics and lifestyles of ostomates, and in spreading awareness we diversify the images that may come to mind.

We asked nine Coloplast Ostomy Ambassadors for a closer look at what it’s really like to live with an ostomy. Here they tell us about aspects of their lives that may surprise strangers, accomplishments made possible by their ostomies, new perspectives on life, what they wish others knew about living with an ostomy, and advice they would give someone facing surgery.

Ada — Ostomate for 4 years.

Axel — Ostomate for 9 months.

Cecelia — Ostomate for 7 years.

Chloe — Ostomate for 27 years.

Christopher — Ostomate for 8 years.

Crystal — Ostomate for 5 years.

Josh — Ostomate for 8 years.

Kaylaa’ — Ostomate for 4 years.

Taylie — Ostomate for 2.5 years. 

I Never Would’ve Guessed you Have an Ostomy

For many people, having an ostomy doesn’t limit what’s possible. In fact, it allows ostomates to dream of and pursue exciting, fulfilling hobbies and careers that may surprise others who don’t know they have an ostomy, challenging traditional stereotypes surrounding medical devices.

Ada: People are always shocked to learn that I have an ostomy and am in medical school! The truth is that I never would have been able to go to medical school without my ostomy. Having a disability and going into healthcare is challenging. Despite our job being to care for sick people, the same courtesy, grace, and understanding are often not given to those of us who work in healthcare. But I believe that disabled and chronically ill individuals are vital to healthcare.

Cecelia: I’m able to exercise way more often and at a higher intensity with an ostomy than I ever could have before surgery. I can go on miles-long horseback and bicycle rides, paddle across wide lakes, attend a weekly boxing class, and lift heavy at the gym regularly. I feel immensely grateful for my ostomy after every satisfying workout and adventure outside.

Christopher: I’m a union plumber, so my days can involve crawling into tight spaces, lifting heavy equipment, sweating my butt off, and working in some pretty uncomfortable positions. I also love skateboarding and staying active. Most people I meet have no idea I have an ostomy, and honestly that’s kind of the point. I’m not hiding it, but I’m also not introducing myself as “the guy with the bag.”

Josh: I am an Air Force officer and C-130H pilot, and in November 2019 I became the first Air Force pilot approved to return to flight status in a pressurized aircraft with an ostomy. Since returning to the airplane, I have operated my aircraft around the world without an ostomy-related incident or limitation affecting my ability to perform my duties.

Accomplishments Owed to an Ostomy

Living with an ostomy often comes with new energy and the freedom to pursue dreams put off in times of active illness or set new goals, leading many ostomates to accomplish what may not have been possible without surgery. The lived experience of having an ostomy has also empowered a number of ostomates to help others in similar situations, creating an ever-growing community of support.

Crystal: [I’m proud of] starting my ostomy Instagram page. Once I was in the right headspace after ostomy surgery, I really wanted to help others who were as lonely, scared, and lost as I was in the beginning. Seeing the comments and direct messages about how I helped others in their journey with my posts put a smile on my face and made me know this was what I was meant to do.

Cecelia: Years later, I’m still proud to have graduated from college with honors and landed a job in my field of study, remembering that for many years I was too sick to take online classes or even think about what I wanted to pursue as a career. My ostomy gave me the health and stability I needed to be a student.

Axel: I’m most proud of learning to trust my body again. After being sick for so long, I lost a lot of confidence in what my body was capable of. Getting my ostomy gave me the opportunity to slowly rebuild that relationship. Whether it was traveling alone, getting back outside, or simply saying yes to something without worrying about my illness, each experience gave me a little more confidence.

Ada: While on my pediatric GI rotation I was able to meet a patient who was facing ostomy surgery. I ended up speaking to the patient and their parents for hours about my ostomy experience, teaching them about supplies, showing them community resources, and answering any questions they had. The patient ended up getting an ostomy and told me that I had even inspired them to tell their friend about it. It was a moment I will never forget and why advocacy and awareness are so incredibly important to me.

New Perspectives and Lessons Learned

An ostomy can change more than daily routines. It may be hard to visualize at the beginning of your journey, but living with an ostomy often shapes how we see ourselves, our bodies, others, and the world around us.

Chloe: Having an ostomy my whole life, I have more gratitude and appreciation for the smaller things in life that others may take for granted. It has definitely shaped who I am today, and how I move through the world. It’s given me a strong sense of empathy and compassion toward others.

Kaylaa’: Going through so much with my health so early in life (I’m 23) and having many of my firsts in life with an ostomy has made me appreciate true happiness and a supportive community. I could not have gotten through what I’ve been through without my mom, my IBD/ostomy community, and fandom culture.

Josh: My experience taught me humility and gratitude. I have a deep appreciation for the medical professionals who cared for me and helped give me a second chance at life. My ostomy taught me how resilient the human body and the human spirit can be. I learned to actively participate in my own life, and some days require nothing more than putting one foot in front of the other.

Reality Check: Correcting Common Misconceptions

Misconceptions about ostomies are common, shaping perceptions and interactions before even meeting a person with an ostomy. Here our ambassadors share what they wish more people understood.

Axel: People think having an ostomy means living with limitations. For me it has meant freedom. Before my ostomy, so much of my life revolved around my illness and where the nearest bathroom was. Now I’m cycling across Europe, sleeping in a tent, climbing mountains, and doing things I once wasn’t sure my body would ever let me do again.

Chloe: People think having an ostomy is just for elderly people. In reality, anyone can have an ostomy at any age, like me — I’ve had mine since birth from a rare congenital illness. There’s a whole community of young people out there advocating for us. Chances are, you’ve probably already met someone with an ostomy without even realizing it!

Taylie: People think that having an ostomy means that you can’t have a good life. In reality, it means taking back your life and getting to do the things you enjoyed before getting sick. Before my surgery, I was essentially bound to staying home and stopped living my life. My ostomy provided me a second chance and allowed me to take back control. I now do anything and everything, living to the absolute fullest with a newfound appreciation for life!

You’ve Just Been Told You May Need an Ostomy . . .

Facing ostomy surgery can feel isolating and overwhelming, but experienced ostomates offer assurances of no regrets, emphasize the importance of asking questions and processing the emotions that arise throughout the ostomy journey, and want you to know that you’re not alone.

Crystal: It’s going to be an adjustment in the beginning. You need to give yourself time and grace as you learn the routine of bag changes and how to be comfortable in your new body. But I promise it will get easier! In time, bag changes, emptying your bags, etc. will just become a regular part of your routine and life. It will sometimes feel like they aren’t even there!

Kaylaa’: It’s okay to be scared, take your time, breathe, and ask all your questions, no matter how small they might seem. Even after it was determined my ostomy would relieve the pain I was in, before scheduling my surgery I asked my surgeon and wound care nurse about the clothes I’d be able to wear.

Taylie: Everything is going to be okay. While it may be scary at first, you will learn how to live with it and will find your confidence over time. For me, getting my ostomy was the best choice I ever made because it gave me a second chance to live, and it now allows me to do everything I enjoy.

Christopher: I would tell them that it’s okay to be scared, angry, confused, or completely against the idea. I felt all of those things. An ostomy might change your life, but it doesn’t mean you stop having a life. You’re still going to laugh, fall in love, work, travel, make stupid decisions, and have good days and bad days. It might take time to find your new normal, and that’s okay.

Opening up about life with an ostomy is a vulnerable act; it takes guts. With greater ostomy visibility comes a wider community of support that makes it easier to navigate the transition to life with an ostomy and to imagine all of the wonderful things that life holds after surgery.

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, advanced wound care, interventional urology, and voice & respiratory care.

*This blog was edited by and features contributions from Cecelia, a Coloplast product user who received compensation from Coloplast for sharing her experiences. Other contributors featured in the blog are also Coloplast product users who received compensation from Coloplast for sharing their experiences.

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