Shane’s story
I was diagnosed in April 2022 with stage 3c rectal cancer at 34 with no family history and only some minor symptoms. At first, I attempted to deal with the symptoms myself, assuming I had hemorrhoids, and put off seeing my doctor out of embarrassment. I never thought for a second there could be anything seriously wrong with me. Unfortunately, the whole COVID situation caused some delays and when I finally saw my doctor, he also thought it was hemorrhoids, so I was booked for a banding procedure. It was when I woke up following this procedure that I was given the news. It was surprising but it didn’t make me angry or sad, to be honest. The way I saw it is that there are millions of people out there (even children) facing worse and I knew I would be well taken care of, so I didn’t spend any time feeling bad for myself. This outlook helped me a great deal throughout the whole journey, as well.
Things moved quite fast after the diagnosis and within two months I was starting chemo-radiation in Ottawa followed by IV chemo in Cornwall. I received truly exceptional care in both cities. Following treatment, we thought I might have avoided surgery for a time, but I ended up having to have an ultra-low anterior resection in late February of this year which left me with a loop ileostomy (should be reversed this fall/winter). I haven’t let this hold me back in any way, though, getting right back into doing the things I love (running & hiking) and adding some new hobbies I had always been interested in but put off (road cycling). I’ve climbed 11 of the Adirondack high peaks already this summer including a solo backcountry camping trip where I summited 5 mountains in a day and I’m about to run a marathon next weekend to celebrate 6 months of being cancer free.
I know there is a lot of stigma surrounding ostomies and many people in treatment dread the thought of having one but, with time, they are really manageable, and you can do just about anything you want with a bit of planning.
From the first time I met with the surgeon prior to the start of my treatment, and he mentioned having an ostomy I was adamant I did not want one and would do whatever I could to avoid ending up that way. A big part of this is just because naturally no one wants to have their body change majorly (especially at a young age) but a lot of it was also from a lack of knowledge and understanding on my part. I did the OPRA protocol with long-course radiation to improve my chances at avoiding surgery, but this wasn’t entirely successful, so I had to have an ultralow anterior resection. At this point, I accepted that it was going to happen and, like with any challenge in life I needed to do my best to prepare by learning as much as possible.
Meeting with an ostomy nurse at The Ottawa Hospital prior to the surgery was really informative as this was the first time I had seen and handled the supplies. It really helped my understanding of what I was in for and did a lot to change my outlook on what was to come. I also found a great online resource called Vegan Ostomy which is run by a fellow Canadian. He has tons of articles and videos on all aspects of life with an ostomy, many of which were a massive help to me. There are many other great resources and online communities which I would encourage others to participate in as it’s really nice to connect with others who are experiencing what you are and there is the possibility to learn quite a bit. There are a lot of different products out there so it’s really important to try a variety and see what works best for you as each person is different. Suppliers are always happy to provide free samples so it’s easy to try a wide variety of supplies.
It can be a bit shocking waking up from surgery to now have a stoma – especially with how swollen and irritated it will be in the beginning. It’s a bit freaky looking, for sure. It’s really important to be patient with yourself and understand this will be a process getting used to it and learning everything you will need to know. I know some people struggle to accept the change and don’t always want to be involved in learning and caring for their ostomy right away, but I would really encourage people to actively participate. We’re often stronger than we think so, while it’s not without its challenges everything can be dealt with. You are still the same person you were before the surgery and, depending on the symptoms you were dealing with before, your quality of life could be even better afterwards. Not to mention, you’re still alive which is pretty great. I think the biggest change for me coming through this whole experience has been that I have a newfound appreciation for life, and I no longer put off doing the things I want to. Don’t put off till tomorrow what you can do now – try new things, go new places etc. It can also be helpful to come up with a funny name for your stoma to kind of lighten the mood around it – mine is named Mike after Paul Rudd’s character on Friends (if you’re a fan of the show you’ll get it).
Once sufficiently recovered from surgery it can be a bit intimidating to get back to physical activity. I know I had some nervousness wondering what was going on inside my body following the surgery and how I might negatively affect things going for a run. Start slow and listen to your body. You can’t go 0-100 but if you’re consistent you will see improvements in your health and fitness soon enough (and your mood – exercise is great for that). I just reached 6 months being cancer free last week and I ran a marathon yesterday on my own just for a personal goal to celebrate how far I’ve come (attached picture). Swimming is entirely possible for people who are into that and sweating while exercising has never been an issue for me. Some people might find they need to change their appliance more often because of this but once you get comfortable and familiar with the process it becomes quite quick to change it so it’s totally worth it to be able to do the things you want to do. I’ve found products that really work for me and have my routine down pat so I can go a week between changes while running 70+km per week, cycling, hiking etc. For runs I generally don’t carry any supplies with me as I don’t find I need to empty even when going out for 4+ hours (running seems to quiet my stoma but everyone is different). I’ll make a thorough inspection to make sure my appliance is in good shape before heading out so I know I can trust it to hold up during the run. Doesn’t hurt to plan your routes to include washrooms along the way, either. I routinely do hikes 10+ hours long or even overnight trips so in those cases I pack with me supplies. Ostomy products are very light so it’s barely noticeable having the extra supplies in your pack. When I need to empty, I just go off trail to a private spot (same thing you’d have to do to go to the washroom normally) but rather than fuss with emptying I just swap out the pouch (I use a two-piece), put it in a special black ziploc and it goes back in my pack. Whole process takes 2 minutes.
In short, everything is still possible with a little planning, a positive attitude, the right supplies and the necessary knowledge. It can be a challenge in the beginning but there are so many great resources so if you take the time to learn your experience will be so much better and you will get back to enjoying life much quicker.
