Alex received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.
I am very lucky; my ileostomy was the beginning of my new life. I had a long time to think about life after surgery as it was a major life-altering decision. I needed to make sure I had tried every other non-invasive method before crossing this bridge.
When I was 12 years old, I was diagnosed with Crohn’s disease. It was tough, but I found ways to manage it with diet, lifestyle, and medication. The biggest thing for me was that I didn’t let it get in the way of things I wanted to do most, and for the past 20 years, all I’ve wanted to do is outdoor adventure sports. While I was healthy, I was able to fully immerse myself in life by trying new things and participating in extreme sports. Getting sick and being unable to participate as I had before was devastating. I didn’t realize how far down the rabbit hole I had ventured, and for the past 5 years I had tricked myself into thinking I was doing alright.
I would still get out and go snowboarding in the winter and I would go kiteboarding in the summer. Who cares that I could not participate for long, that I had no energy, and that I would be running off to find a bathroom every 10 minutes? Who cares that I was too weak to be as proficient as I was accustomed too? I was still participating! But when I look back, I was a spectre of myself. I was terrified of soiling myself if I left my home; I was in constant pain and discomfort. I used to be full of life, laughing, engaged – a part of things. The few times I would see friends I put on a brave face, but then I would go home and collapse on the couch. Eventually I stopped hanging out altogether - I did not have the energy to be social. I depended on my partner for so much: cooking, cleaning, grocery shopping. I was dragging myself to work every day, putting every ounce of energy into getting through the day, and coming home with nothing left to give, no energy to cook or clean. No energy to support my partner. This was not the person I remember being, and this was not the person I wanted to be.
I had tried everything, from diets to medications to conquer my disease, but the disease was winning. I was sick and tired of being sick. I wanted to be strong again. Not only did I want to be able to go out and be active doing all the fun activities I used to do, I wanted to be an equal partner in my relationship, instead of being a constant drain of energy and emotion. I could not continue on the same course, I needed to make a drastic change.
When the word ileostomy first floated through my orbit 15 years ago, I thought if I needed to get one, I had failed. I thought it was a sign I was weak and could not heal myself. Even through all my major scares in the past, I had always pulled through and gotten back to a feeling of normalcy. Getting the surgery is not necessarily the right path for everyone to take, but if you do take it, you are not a failure. After years of going down every other path, this was my last medical option to control my disease. I am glad I tried everything, but I am equally as glad I had the option of an ileostomy to manage my disease.
I made the decision to undergo ileostomy surgery to get my life back. Since coming out of surgery, I have put all my energy into healing and getting stronger. Instead of focusing on any potential negative aspects of this new change in my life, I have kept a positive focus on what my ileostomy allows me to do, and how it will help me get back to doing the things I love. With these goals in mind, I began putting in the work that required me to get there. I started small by walking around the house, sitting up straight, and performing breathing exercises to engage my core muscles. Under the supervision of a physiotherapist, I have been able to increase my intensity and overall strength. Adapting to this new life is hard, but if you approach it with the right perspective and the right products, it makes it a lot easier.
I am stronger than I have been in years. I have energy to help around the house, and I can go and participate in any activity I want and not feel the need to hold back. I am now 4 months post op, I have been able to get back to snowboarding, and I’m having more fun on the mountain than I’ve had in years. I also go swimming twice a week, which I was too scared to do for years. I am well on my way to being strong enough to kiteboard again, and beyond excited to get back onto the water!
Celebrate the small victories because they are the groundwork for the big victories. I think about all the things I could not do before my surgery and look forward to all the potential achievements I can work towards now that I am well on my way to becoming healthy again. I focus on the positives, and when things do get difficult, I look back at how much worse they were, and push forward.
