Square One (Again)
Blog written by Kate Larson
My first bike ride after having my large intestine removed was a train wreck.
I could barely pedal because I didn’t know how to bend my body around my new fancy stoma hardware. The previously cushy seat of my trusty road bike was painful on my newly healed backside. I didn’t know how to get all my parts together and moving forward in a way that felt comfortable or natural. That ride lasted roughly 4 miles on a paved trail I’d loved before my surgery, and I was pissed, tired, and defeated by the time I got back to my car. Was this how riding would be for me from now on? How was I going to get back to loving my bike when it felt like I was fighting my body to get moving? Riding a bike was my happy place; who would I be without it? I had to find out how to get that part of myself back.
My name is Kate, and I’m an ostomate. I have an end ileostomy, which is a portion of my small intestine surgically attached to the outer wall of my abdomen to deal with waste elimination. I poop into a bag. I don’t have a large intestine or rectum any longer, and my stoma is permanent. My surgery came after a lifelong battle with ulcerative colitis that resulted in a colon that was no longer functional. As a person with what is considered an invisible disability, I don’t speak for others or their experiences. If you met me on the street, you’d never know about my ostomy bag, and that gives me an amount of privilege in disabled spaces. I am also not a para-athlete, because para-athletics are their own nuanced space governed by guidelines for participation that I don’t meet, and that’s totally ok!
My medical appliance came with a steep learning curve later in life, and I am not an authority on anything beyond my own experience. I had no idea about anything having to do with adaptive cycling until I needed to learn about it. The vocabulary for talking about my new experience and the body I was living in was sorely lacking, and it took a lot of learning and unlearning for me to figure out how to communicate what I needed. I still don’t always get things right, and that’s also OK, since that’s how we learn.
What I’d like to share is how things had to change for me to get back on my bike, including my outlook on what I was capable of. If you or a loved one are struggling with the decision to go through with ostomy surgery and are contemplating how life can look after: here’s how I got back out there. I have faith that you can, too.
First stop was my GI. We discussed my options, and what being active would look like for me post-surgery. I was incredibly fortunate that he had someone in his life who had an ileostomy – his dad, an avid skier and swimmer, had his large intestine removed over 20 years ago and was not slowing down his lifestyle for anything. It gave me a jumping off point: if there were people out there being active so long post-op, then I could do it, too! My doctor reassured me that falling with an ostomy wouldn’t result in my intestines popping out of my body like crazy snakes (a serious concern of mine), gave me some tips on how to protect my stoma from injury, and told me to keep trying until I found a way that worked for me.
Then came Instagram: the place I could connect with other folks in the ostomy community to find out how they were living their lives while taking their appliances into account, and how I could do the same. How were they managing their bagging system, hydration, food, etc. while staying active? Were there any cyclists I could connect with, and ask those questions that are awkward for an able-bodied person to begin with, let alone someone who now was minus some organs and had a poop bag glued to them? Would I need to change up my bike, my kit, my saddle to accommodate my new body? So many questions, and so much fear. As a person whose active lifestyle has been determined by the limitations of my body for most of my life, my greatest fear was not being able to find comfortable, successful ways to get active again. Or that getting back to being active would be a huge and expensive game of trial and error, where I’d spend a lot of money on things that didn’t fix the problem.
In trying to change up my bike and kit, it felt like there was an elephant in the room. The cycling community at large has an aversion to talking about disabled cyclists, and the fact that they have different needs than able-bodied cyclists. The largest, most recognizable companies in the space don’t cater to what disabled folks need, or ask how they go about making their kit, bike, and accessories work for them. Some people still view E-bikes as “not real bikes” (though that’s changing!), and many are unaware of how many folks with disabilities choose to ride their bikes as a form of mobility aid. There was nobody I could talk to at my LBS about my need for a different saddle because I didn’t have the musculature of the rectum to keep my backside from hurting when in a seated position for too long. It’s not that they didn’t want to help; that’s not the case at all. But how do you approach a problem that you’ve never considered needing a solution for?
Before my surgery, I had no idea how incredibly costly being active can be for a disabled person, both in terms of time and money. I had no concept of the preparations that went on before a ride and didn’t know the maintenance and logistics that must happen after. I had a small understanding of the anxiety that comes from the unknowns that can make traveling, riding, and training difficult, because IBD makes you hyper-vigilant to where every bathroom is along a route. But I didn’t get it, not in this way.
Most generic training programs don’t account for modified movement. For someone like me who can’t lay on their stomach or bend certain directions, this led to frustration and extra homework to find ways to complete movements that wouldn’t leave me uncomfortable or in pain. Personal trainers don’t always consider that with a disability or chronic illness, some days you just can’t ride or train because your body won’t allow it. Energy was a commodity that I either had or didn’t, and I wasn’t always in control of how those commodities were spent on any given day.
With my new knowledge in tow, I moved forward with my plan to get back on my wheels.
My transition back to riding comfortably started with the saddle. I needed a cushier saddle for my new anatomy, which meant buying or trying new saddles. Shorts that were previously good on my body now rubbed the area where my bagging system sat and caused leakage issues, so they needed to be replaced. The bag itself could cause chafing since it’s made of plastic, so I needed to account for that. I needed to learn how to manage the bag when moving, so it didn’t interfere with my pedaling. There was the addition of a hernia belt, and a protective plate to shield the stoma itself in case of a crash because it’s a squishy piece of intestine. My pack had extra bag supplies in it for leaks and changes if needed, and I learned the best way to handle bag changes in the field.
If it was particularly hot and sweaty, the bag needed an extra support band to hold it on more securely. The preparation of taking in enough electrolytes and water to keep me hydrated can be a challenge without a large intestine since that’s where most of your water intake is absorbed, and it became a weird balancing act I needed to keep ahead of. Eating while riding was different because my digestion was different. On and on the changes went, and I adapted my rides to meet my needs.
I got back to riding my road bike and slowly branched into gravel, learning along the way what queues to listen to within my body to make my rides more enjoyable and successful. I put on my hernia belt and plate in trailhead parking lots, because I’m not ashamed of my appliance and I don’t see it as anything different than someone putting on their riding shoes. It’s not some deep dark secret that I feel the need to hide from the world, it’s just my body. The very few times I’ve been asked about it, there was curiosity. One memorable interaction was with a kiddo on a push bike, who asked “Does it keep your guts in?” I was delighted to be able to say yes, and he scooted away seemingly satisfied.
I’d rather be asked. There’s a lot of negativity out there surrounding stomas. I’ve seen comments where folks have said they’d “rather be dead than have one,” or that having one makes the user “doomed to be alone for life.” As if those using medical appliances were suddenly unworthy of love or weren’t sexy? A lot of my fear around having to get a stoma was rooted in these inaccuracies, and the stigmas that surround waste collection systems. I didn’t know that these were inaccurate, and I didn’t know how much better I’d feel without a diseased colon to make my life harder.
When deciding to try for the All Bodies on Bikes SBT GRVL team, I made the conscious decision to be open about my stoma and how terrifying learning to navigate my new body was. If they didn’t want me while I was being as authentic as I could about my struggles, I reasoned, then this wasn’t the group for me. I’d done an incredible amount of work to get my body back to a state where I was able to ride again with limited discomfort, and I was proud of that. Thankfully, they wanted me exactly as I was: a former roadie commuter who dabbled in gravel, with a stoma.
If I’d been able to see more folks with ostomies on bikes in the first part of my recovery, my first ride back might not have made me feel so bad about what I couldn’t do anymore. Instead, it would have given me peace of mind that this was just one step on my journey of adapting my gear to work for me. I got there eventually on my own, but that visibility of other ostomates on bikes would have been helpful. Knowing that folks with bags were rocking it just like I wanted to was the best discovery I could have made, and I will forever be grateful for ABOB for giving me a chance to maybe be that for someone else out there.
Here's where I’ll invite you to imagine that the level of personal tuning and preparation I undertook is not confined to those with ostomies. Those in the disability or chronic illness communities likely have their own ways they tailor their activities to fit their physical and cognitive needs on a given day. They can’t necessarily go to their local bike shop to get parts that will work for them, or shop for cycling clothing that will suit their needs. In some cases, there aren’t solutions for the hurdles they face – they haven’t been thought up yet or are inaccessible in other ways. Consider what your rides would look like if you had to account for any of these other factors on top of your existing routine. How would that change the way you ride, and plan for rides? How would it change your level of patience with people in your riding group, or help you give grace when pacing needs to be adjusted? When we consider how different bodies need to ready themselves for riding, it allows room for more bodies to join us, however that looks to them.
Really, what do we have to lose by being more inclusive? Your KOM or PR will be there for you to chase another day, but that person who needs you to speak up and slow the pace might never return if you don’t help them feel not only included but valued in this space. That’s what riding should be about: helping everyone get out there, however that looks to them.
If you find yourself at the top of the hill on a fun ride, and you are waiting for the last person to meet up with you, here’s an idea. Instead of impatience or snark, think of what that person had to overcome to be here with you today. Think of me, putting on my hernia belt and plate and dialing in my supplies one last time, and remember that you don’t always know what someone goes through to show up. The very least you can do is wait, celebrate their achievement with them, give them a few minutes to breathe and have a snack, and then resume your ride as a group. Because one day, you might be coming back from an injury, or surgical recovery, and that will be you at the bottom of the hill, dreading the fact that your group won’t wait for you.
For those of you out there wondering whether you, with all your needs and talents and circumstances, deserve to give these sorts of things a try, the answer is always yes. How you ride bikes, whatever that looks like, deserves to be acknowledged and celebrated. Even if it changes all the time, if you don’t do it as often as you’d like, or if you’re still adapting your rides to what works best for your body. Your rides and your experiences are valid and wonderful, whatever form they take.
