Paula: I wouldn’t change my ostomy for the world

Paula received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.

If I could go back in time, I would sit with my 18-year-old self in that hospital bed and tell her everything would be okay, and that we’d make it out on the other side.

I got sick in March 2021 with severe perianal Crohn’s disease. I had been feeling sick for months and every day just kept getting much worse. I’ve always known my body well, so when I first recognized the new symptoms, I knew I needed immediate help. It took months of multiple doctors and ER visits, with no helpful answers or treatments, for my health to completely deteriorate to the point of sepsis. They caught it when it was already too late.

I vividly remember waking up from my first colonoscopy and being told that I had something called Crohn’s disease and needed immediate surgery because of a severe infection in my rectum.

I was then heavily sedated, separated from my mom, and taken for surgery in a matter of minutes. I had never even heard of this disease before - I knew that I was sick, but I never could have predicted the months of agony and pain that would follow.

I spent over 200 nights in the hospital and had 14 surgeries total that year. Sepsis after sepsis, drainage after drainage, I wasn’t getting any better. In fact, I was quite literally dying. The word ‘ostomy’ started being tossed around after my fourth surgery, and the way my surgeon explained the surgery, post-op, and life with an ostomy was honestly very daunting. It sounded like a death sentence as an 18-year-old girl, and so wearing a bag of my own poop moved up on the list of my biggest fears.

My biggest nightmare turned into reality in April of 2021. I was told that if I didn’t have the ileostomy surgery, I probably wouldn’t even make it through the night. I didn’t have a choice, and I’m honestly so grateful for that - if I had the chance to sit with the fear of all the unknowns, I would’ve never gone through with it.

The first couple months post-op was traumatizing. I think I cried every waking hour of every single day.

Everything about my new reality terrified me and made me extremely depressed. I was grieving my old body and life, and at the same time, trying to navigate living with this new ostomy. It felt impossible for a while, and there were moments when I so badly wanted to give up; but I didn’t.

I would be lying if I said it happened over night. But one day, I woke up and the fog started to clear. My mom, who has been my greatest supporter and motivator through this whole journey, sat at my bedside one day and told me: “You can either tire yourself out by trying to hide and be ashamed, or you can show the world who you really are and move on with your life.”

I remember so desperately needing someone to turn to that night before my ostomy surgery. Someone who could answer my questions and reassure me that I would get to the point of living a normal life with an ostomy. I knew that if I was in that position, there had to be many others in the same boat.

So, I picked up my phone one day, and I posted a TikTok - a 12 second video that I didn’t think would really result in anything. Then the comments started coming in of girls my age who recognized the bag on my stomach and said that they also had one. I remember turning to my mom and saying “I knew it! I knew I wasn’t the only one.” So, I started posting more and more. I started sharing my journey through this diagnosis, surgery, and acceptance process with those who chose to come along for the ride.

I was supposed to have my bag for only 6 months initially, but things didn’t work out as planned. I was still sick despite being diverted, and my perianal Crohn’s never really settled. Finally, in March of 2022, I was taken in for a total Proctocolectomy. I wasn’t dying this time, so it was ultimately my decision. My surgeon told me this was my only shot at a normal life, so I took it. As daunting as it seemed and as terrified as I was, I would have given anything for a second chance at a good quality of life.

I thought my life ended when I first got my ostomy, but I was so wrong; it was just beginning.

I’ve learnt to appreciate every little thing in my life. Through my community of IBD friends and followers, I’ve made some genuine and lasting connections with people who have gone through very similar experiences.

My ostomy saved my life and because of that, I’ve learnt to love it. Instead of lying in a hospital bed on holidays, I’m able to travel to see my loved ones and go out and party if I want to. It gives me the freedom and quality of life that any 19-year-old deserves.

Coloplast has been the main reason as to why I’m able to stay so confident with my bag. I only use the SenSura® Mio line because of how aesthetically pleasing it is - I literally refuse to wear any of the beige bags because they make me feel insecure.

The grey Coloplast bags have helped me shift my mind set into thinking my bag is an accessory rather than just a medical device.

I think many teens love Coloplast because of the difference in quality, colour, and function of their products. There’s so much more to creating an ostomy bag than functionality – it’s also about the comfort and confidence that it provides to the individual wearing it.

I love knowing that I can be that person for others that I needed when I was sick. I love that I can be a friend for others to turn to when they’re scared about their future with an ostomy.

There are so many of us in this community, but we often don’t want to show our faces. I’m more than happy to be that girl that breaks the stigma, challenges the norm, and shows people that you can still be sexy with an ostomy bag.

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