6 Years Later: Lessons Learned from Life with an Ostomy

Renee, Canada | @beautifullybroken_rw

Living with an ostomy for the last 6 years has been a journey. What began as an option that I avoided for several years, became a permanent decision that has changed the course of my life.

I was diagnosed with Crohn’s Disease at the age of 9 years old. From day one, I had experienced severe symptoms, transitioning from medication to medication and flare up to flare up, with no signs of remission.

The conversation of having an ostomy was also not foreign to me. I remember talking with my doctor in my early twenties about having the surgery and all I could do was cry. There was no version of me that included life with a bag.

As the years went on, and the hospital stays got increasingly longer, the thought of getting an ostomy became closer to a reality.

It was after my routine colonoscopy when my specialist told me that they could no longer see inside of my colon. It was inflamed with scar tissue and doctors would have difficulty detecting cancer in the future. From that day, I knew I had to decide whether to keep things the way they were, or change my life for good.

The decision to have an ostomy had a lot of unknowns. There was no guarantee that my Crohn’s won’t come back. It was a risk, but the alternative was also just as risky.

It took time to decide, despite the obvious answer was right in front of me. Was I willing to make a decision with no idea what to expect? I needed to put my body and mind in a space where I was ready to receive whatever happened.

So I did it.

6 years later in remission. Symptom and medication free.

One of the most difficult, but best decision I had made for myself.

What I’ve learned these past 6 years

I’ve learned a lot about myself during recovery and living with an ostomy.

First, you need to mourn the life you thought you were going to have. Growing up, I had expectations for myself – milestones I wanted to achieve. None of which included an ostomy. So I had to give myself space to mourn my previous life and expectations. Grieving is normal and doesn’t end, but as you heal and give yourself the space to mourn, it gets easier.

Secondly, I am still me. Learning to love myself was a hard and long emotional journey. I thought having an ostomy would change who I was. But I quickly learned, I am still me. As I started to feel better, I learned I can still wear what I want and be comfortable in my own skin. Health gave me confidence, and I owe that to my ostomy.

Another thing I’ve learned about having an ostomy, is to patient with yourself. It takes time to learn your body again. I remember having my first leak. I was in a panic and was frustrated with myself. But as the years went on and I learned about my body, the leaks were few and far between. They happen, but you learn to deal with them.

Lastly, connect with others in your community. This is something I wish I had known a long time ago. The ostomy community is small but diverse. Throughout the years, I was able to connect with people from all walks of life and experiences that helped me come to terms with my ostomy. I’ve learned a lot about myself and my ostomy through the community and I am forever grateful for this.

Living with an ostomy can seem like such a big life change. To be honest, it is. But it’s not the end of your life. It’s the beginning of learning a new version of yourself. One that is more beautiful than the one before.

Renee