Tag Archive for: biking

The Adventure of a Lifetime: Lessons from Cycling Across Europe After Ostomy Surgery

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By Axel Keller

This morning, I asked a woman to take my picture. Afterward, she looked at my bicycle, loaded with bags, and asked where I was headed. “Portugal,” I replied. We were standing in Copenhagen, Denmark, nearly 3,000 miles from my destination and almost 2,000 miles from where I had started 38 days earlier at the northern tip of Norway. Her jaw dropped. “Wow,” she said. “That’s the adventure of a lifetime.” I smiled, because little did she know, this wasn’t the adventure of a lifetime. That adventure had already happened. It began years earlier when I was diagnosed with ulcerative colitis and continued through countless hospital visits, medications, and uncertainty before culminating in the removal of my colon in December 2025 at just 22 years old.

The bike ride is only one part of this journey. Since surgery, I’ve learned more than I ever expected about living with an ostomy. Today, I’m partnering with Coloplast to answer a few questions about life with an ostomy and share some of the lessons I’ve picked up along the way.

What would surprise a new ostomate most about your life today with an ostomy?

If there’s one thing that would surprise a new ostomate, it’s how ordinary my ostomy has become. Before leaving for Europe, I imagined it would be the focus of every day. I worried about changing my bag in remote places, carrying enough supplies across multiple countries, finding clean places to do bag changes, and what would happen if something went wrong hundreds of miles from the nearest hospital.

Instead, my ostomy has become just another part of my routine. I change my bag, pack my supplies, and get back on my bike. Some mornings I wake up thinking about the weather, how many miles I want to ride, or where I’ll find food that evening. Most days, my ostomy isn’t the first thing on my mind anymore.

That’s probably the biggest surprise of this entire journey. Cycling across Europe isn’t possible because I ignore my ostomy, but rather because I’ve learned to live with it. What once felt overwhelming has simply become another part of preparing for the day, no different than filling my water bottles or checking the air in my tires.

How are you managing your ostomy as you cycle across Europe?

Before leaving for Europe, managing my ostomy was one of my biggest concerns. I spent months planning every detail because I wanted to eliminate as many unknowns as possible. Looking back now, it’s funny how much time I spent worrying about something that has become one of the easiest parts of my daily routine.

When it came to supplies, my philosophy was simple: always bring more than you think you’ll need. I packed about 25% more supplies than I expected to use throughout the trip because accidents happen, and it’s always better to have extras than to find yourself without what you need. I ordered everything well in advance of my flight to make sure it arrived before I left, and because I had four flights to reach the start of my journey in northern Norway, I carried all of my ostomy supplies with me in a separate medical bag. If my checked luggage was delayed or lost, I knew I would still have everything I needed.

Once I was on the bike, I never kept all of my supplies in one place. Most of them stay in one pannier, but I always keep a few complete bag changes spread throughout my other bags. That way, if one bag gets damaged, wet, or lost, I still have backup supplies within reach. It’s a simple habit that has given me a lot of peace of mind.

Bag changes have also become much easier than I expected. My Coloplast appliance typically lasts four to five days, so sometimes I’ll change it during a rest day at a hotel or cabin, just as I would at home. Other times, I’m deep in the mountains or camped in the middle of the woods. Before leaving on this trip, I practiced changing my bag while sitting on my bed, knowing that it would be similar to changing it inside my tent. By the time I found myself doing my first bag change on the road, it felt familiar because I had already practiced the process.

For disposal, I carry small dog waste bags with me. After a bag change, I seal everything inside one of those bags and store it in a separate place on my bike until I reach a proper trash bin. It’s a simple system, but it works well and helps me leave every campsite exactly as I found it.

The biggest lesson I’ve learned is that confidence comes from preparation. I didn’t eliminate every possible problem before leaving, I simply prepared well enough that when something unexpected happened, I knew I could handle it. That mindset has carried me through thousands of miles across Europe, and it’s one I’ll take with me long after this ride is over.

What has this journey taught you about yourself and life with an ostomy?

More than anything, this journey has changed the way I think about my ostomy. When I first had surgery, it felt like everything revolved around it. Every decision I made, every place I went, and everything I planned was influenced by this new part of my life. It was impossible not to think about because everything was still so new.

Now, it’s simply part of who I am.

There are days on this trip when I spend far more time thinking about the weather, where I’ll sleep that night, or how many miles I want to ride than I do about my ostomy. I still take care of it every day, but it no longer defines my day. That shift didn’t happen overnight. It happened through repetition, preparation, and proving to myself, one experience at a time, that I was capable of far more than I believed after surgery.

This journey has also changed the way I think about myself. Before leaving, I wanted to prove that I could ride across Europe with an ostomy. Somewhere along the way, I realized I didn’t have anything left to prove. My ostomy wasn’t holding me back anymore. It had simply become another part of my routine, just like packing my bike or setting up my tent.

The greatest lesson this trip has given me is that confidence doesn’t come from having all the answers. It comes from showing up, facing the unknown, and realizing you’re capable of handling more than you ever imagined. My ostomy may have changed the way I live, but it hasn’t changed the size of the life I’m able to live.

What would you tell someone who’s worried their ostomy will hold them back from traveling, exercising, or living the life they want?

If you’re reading this while recovering from surgery, wondering if you’ll ever travel, exercise, or chase the dreams you had before your ostomy, I’d first tell you that those feelings are completely normal. I remember lying in a hospital bed wondering many of the same things. At the time, riding a bicycle across Europe wasn’t even on my mind. I was simply hoping to feel healthy again.

Recovery takes time. There isn’t a moment where everything suddenly feels normal again. Instead, life slowly begins to open back up. The first walk turns into a hike. The first bike ride turns into a longer ride. Before you know it, you’re doing things that once felt impossible.

Don’t feel like you have to prove anything to anyone. Your goal doesn’t have to be riding across Europe. Maybe it’s walking around the block, going out to dinner without worrying about your ostomy, returning to your favorite hobby, or taking your first trip after surgery. Every milestone matters because every milestone reminds you that your life is moving forward.

If this journey has taught me anything, it’s that an ostomy doesn’t have to make your world smaller. It may change the way you prepare, the things you pack, or the routines you build, but it doesn’t have to change your dreams. Six months ago, I was recovering from surgery. Today, I’m writing this from a campsite in Denmark.

If I can leave you with one thought, it’s this: be patient with yourself. Give yourself time to heal, celebrate the small victories, and don’t let fear decide what your future looks like. You may be surprised by just how much life is still waiting for you on the other side of recovery.

 

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.

Axel is a Coloplast product user who received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

 

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Patrick McKinney’s Story: Leading by Living

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Photo Cred:  Dave Camara / Camara Photography

 

By Ed Pfueller, UOAA Communications & Outreach Manager

If you’re looking for Patrick McKinney you’ll likely find him outdoors. Depending on the season, McKinney, 54, of New Market, Maryland, can be found speeding down a ski slope, powering up a hill on his bike, tending to horses, or photographing his daughters playing sports.

That wasn’t always the case.  In 1984, as a 17-year-old, while donating at a high school blood drive, he was found to be anemic. The formerly active teen had been experiencing incontinence with blood loss for 18-24 months and was afraid to tell anyone.  After confiding in his mother and seeking a diagnosis, a colonoscopy revealed ulcerative colitis. By his mid-twenties he found himself hospitalized several times after his body stopped responding to conventional steroid-based therapies.  In 1993 he had the first of five surgeries that over the years eventually led to a temporary ostomy and a j-pouch. He was plagued by stricture problems and other issues with the j-pouch. “With the j-pouch I was still going to the bathroom 15-20 times a day when it was bad,” McKinney remembers. When another surgery was required in 2004 because his j-pouch perforated leaving him septic, his doctor at the Cleveland Clinic prepared him for the fact that depending on how it went, McKinney could wake up with a permanent ileostomy.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years”

Indeed that was what happened and he experienced the struggles so many new ostomates have while trying to adjust both mentally and physically. McKinney now says, “Getting an ostomy was the best thing that ever happened to me, I got my life back.”

McKinney credits reading Rolf Bernirschke’s book Alive & Kicking for encouraging him to not be held back by his ostomy. “His book got my life back on a normal track. I started being an advocate and lived life again.” McKinney recalls.

McKinney wrote to Rolf and was honored to receive a Great Comebacks Eastern Region Award in 2008, which included the chance to meet the inspiring former NFL Man of the Year.  Since then he has embraced taking part in sports he had never even tried before having ostomy surgery.

McKinney’s first major post-surgery athletic challenge was competing in a half-marathon in Sonoma, California in 2009. The success of it inspired him to try other competitive sports. A family ski trip to Colorado piqued his interest in alpine ski racing. After entering an amateur event in 2014, he was surprised to learn his time qualified for nationals in his age group. After that he was hooked on “running gates.” McKinney has been alpine racing ever since and is a member of NASTAR’s Team Zardoz and the United Ski And Snowboard Association (USSA) Mid-Atlantic Masters Ski Racing Association and trains at Montage Mountain in Scranton, PA.

During the rest of the year, McKinney can most often be found on his bicycle touring the rolling hills of rural Maryland. As a member of the Frederick (Maryland) Pedalers Bicycle Club he rides over 3000 miles per year including events like the Tour de Frederick and the Civil War Century.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years,” he says. For those hesitant to try riding again McKinney advises “Being prepared helps to put your mind at ease.” “Have a plan and know where the bathrooms are at local parks, I empty right before to go out. The back pocket on a cycling jersey is perfect for bringing extra supplies and wipes. My ileostomy tends to not have much output when I’m being active.”

In 2019 McKinney heard that UOAA’s National Conference was coming to Philadelphia, PA and welcomed the opportunity to see Rolf again and check out the unique event. Talking to other ostomates at the conference inspired him to do more with UOAA. “It helped me realize this is a chance to see what I can do, and that it is the right time to get more involved with the Frederick Area Ostomy Support Group.” McKinney has been an active member and is now the group’s President, supporting their activities even as in-person meetings were suspended this past year. In just the past few years he has offered his perspective as an ostomate to nursing students at a local community college and as an ostomy patient visitor. In support of Ostomy Awareness Day, he helped to procure proclamations from local government and organized a walk for the Run for Resilience Ostomy 5k, a major fundraiser for the programs and services of UOAA.

“Getting an ostomy was the best thing that ever happened to me, I got my life back.”

“The biggest thing is to provide some hope.  Almost everyone is devastated and so unsure about how to live through this experience,” McKinney says. On a national level, McKinney is now a member of the United Ostomy Associations of America Education Committee.

“I try to lead through living my best life. Sharing what I can do, but also keeping in mind to listen to your body. Get out there and walk, or ride on a bike.  For most, an ostomy will not impact that, I try to be encouraging and positive.”

His advice for other ostomates looking to get active? “Your only limitation is your mind.  If your doc says you are healthy enough do it, hydrate, hydrate, and always be prepared.”

What can I do with a Urostomy? What can’t I do?

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Don’t let an ostomy stop you from having some summer fun

By Annemarie Finn

When I received my bladder cancer diagnosis and the treatment plan, a radical cystectomy with an ileal conduit, I was devastated. Like so many, I went through many stages: Denial, Anger, Bargaining, Sadness and Depression, and finally, Acceptance. It felt like a double whammy. It seemed like the “cure” was worse than the disease. I would be forever changed. It was hard to wrap my brain around. It is one of the reasons I decided to write about my experience. I had no idea what to expect and did not know where to turn. I saw some videos of survivors with ileal conduits but, I did not relate with the speakers. They were 20-30 years older than I was. I really did not want to envision a life as an elderly person before it was time.

I can use a public restroom without having to sit on the gross toilet!

What would my quality of life be? I was terrified that life, as I knew it was over. Would I be able to work? What activities would I be able to do? What would I never do again? I had so many questions and fears.

So, what can I do now that I have a urostomy?

Honestly, I can do everything I could do before. When you first get out of surgery, you are hardly able to walk around your room. When you go home, the end of the driveway is a monumental trek. By persevering and trying to walk more everyday, I was able to go from measuring distance in feet to measuring in miles. Today, I try to walk 5-10 miles a day! I have hiked intermediate trails in the hills of Eastern Massachusetts. I have discovered miles of trails in my hometown that I didn’t even know existed. I am probably healthier than I was before I got sick.

Can you take a bath?

People often ask if you are able to bathe with a bag. It is very nerve wracking initially to expose your stoma. They are fairly active. I call my stoma, Squirt, when he (yes, it’s a he) acts up. He does spray urine. Picture a male toddler squirting. That’s what it’s like. We have no control over it. That’s why we wear a pouch.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way.

You can wear your urostomy bag in the shower. You do not need to cover it or keep it dry. It is a good idea to dry the skin around it with a hair dryer on low when you are done. You can even take your bag off and shower without it. I am over two years out from my surgery and that is how I prefer to do things on my change day. I change my bag every 3 days. I prepare all of my materials (bag, ring, barrier, paper towels, remover spray) then remove my bag. I then take a shower. I wash the skin around the stoma with just water or soap for sensitive skin. Just make sure you do not leave behind any lotion or any residue that would affect the barrier sticking to your skin. I keep paper towels ready to catch any drips when I am done and dry the skin with a hair dryer on the cool setting. I then just put on my prepared bag. I have some skin issues and find this helps with the itching and discomfort. It feels so good not to have the bag on for a while.

What about swimming?

I am a water rat. I can be in the water for hours, literally hours. It doesn’t matter if it is in the ocean, a lake, or a pool. I have done them all. Personally, it has not affected the amount of time I am able to wear a pouch. I am still able to go 3 days. I am able to swim, kayak, and paddleboard with my urostomy. I even just float. It has not interfered with my love of water at all. Even better, I can wear a regular bathing suit. I have worn tankinis for years, and not because of my urostomy. I no longer have a toned teenage body. I don’t even have a toned 30 something body. I like 2 piece tankinis as they hide a multitude of sins. After I got my urostomy, I decided to buy regular 2 piece bathing suits. Ironically, I am much more comfortable with my new imperfect body than I ever was before. My family laughs at me because, where I was self-conscious before, I now show off my body. Maybe it was having so many strangers looking at my most intimate body parts in the hospital or maybe I am proud of my battle scars. You cannot see my bag with my bathing suit on. It’s honestly no big deal.

There are so many other things I have been able to do since my urostomy. I ride my bike. I participated virtually in the Norton Cancer Institute Bike to Beat Cancer, a 35 mile bike ride. I did it in steps but I gave myself a pass since it was only months after my surgery. I garden, do yard work, spread mulch, work, travel, you name it. As you can see, it has not limited me in any way. Because of my urostomy and thanks to my night bag, I can sleep through the night without having to get up to use the bathroom. That means I can drink up until I go to bed! I can sit through long car rides and movies with said night bag. I can use a public restroom without having to sit on the gross toilet! I can write my name in the snow!!! That is not conjecture, I actually did it. My sex life is good. I am planning a European vacation. Both of those will be the topics of future blogs.

What about what I can’t do

The list of what I can do is long. What about what I can’t do. I can’t pee like I used to. I am careful about lifting. I had a hysterectomy with my radical cystectomy so no more children for me. Since I was in my late 50s when I had my surgery, it’s not really an issue but, I am trying to be honest here. That is something to consider if you are younger. Definitely talk to your doctor if you want children. I can’t play the piano, but I couldn’t before. That’s about it.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way. You can still do what you did before and even try new things. Even better, it is a life saver. Go out and live your best life. That’s what I am doing.