Ostomy user experience

Nadia: Wearing my ostomy bag loud and proud

There were a lot of silent battles, a lot of uncertainty, many struggles with body image, a lot of wondering, “how will I ever overcome this”, but most importantly, a lot of resilience.

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

Hi! I’m Nadia and I was born in Toronto, Ontario, Canada. For most of my life, I’ve battled with an autoimmune disease, Ulcerative Colitis (UC), which is a type of inflammatory bowel disease (IBD).

My first UC symptoms started in May 1997. I started feeling a lot of gastrointestinal discomfort, and as time went on, my abdominal symptoms became worse. After multiple tests, bloodwork samples, and a colonoscopy, I received my UC diagnosis in July 1997, just 2 weeks before my 15th birthday.

I spent that summer learning about how to live with an autoimmune disease while trying to manage my symptoms, both of which I had little success in. The next several years, I went through months of perfect health to debilitating flare ups. It was a rollercoaster of emotions and symptoms, and I struggled both mentally and physically, but I always made my health a priority. I focused on exercise and a healthy diet, which I found helped so much even when I was in remission. Despite having a chronic illness, I was able to achieve many life goals I had set for myself, such as: completing my university degree, securing a full-time job, getting married, and having children (I have been blessed with two).

After a few solid years in remission, I started having UC symptoms in April 2022. Assuming I was going into a flare up, I braced myself for what I thought would be a quest for a new medication. I had a colonoscopy to investigate, which was when I received the devastating news that I had colorectal cancer in November 2022. After more scans, bloodwork, and tests, I found out my cancer was stage 1. For me, this meant that I did not have to undergo any cancer treatments, but I would have a total proctocolectomy surgery and a permanent ileostomy. I was devastated and overwhelmed with emotion. I could not fathom that my body would change permanently, without my permission. As I tried to imagine what life would be like with an ostomy, negative thoughts flooded my mind.

I worried about learning the ins and outs of living with an ostomy, how I would navigate dressing my new body, how my body would look, going to work, exercising, intimacy, and the list goes on.

Once I had my surgery at Mount Sinai Hospital in Toronto, I was in so much pain, not very mobile, and the feeling of overwhelm intensified because it was hard for me to manage caring for my ostomy. My husband jumped in and has been there every step of the way. It’s easy to feel so alone in this process, and I am so very lucky to have someone that is always ready and willing to help me all day, every day.

In terms of ostomy supplies, I have been using Coloplast products since my surgery and hospital stay, and I really like them.

I currently use a 2-piece SenSura® Mio click system. Over the last year or so, I’ve learned so much about ostomy products.

I also use SenSura® supporting products, including Protective Ring, Adhesive Remover Wipes, Skin Barrier Wipes, Stoma Powder, and the Lubricating Deodorant.

The Brava® Protective Ring has been a game changer in managing leaks and protecting my skin. Just love it!

After years of keeping my UC diagnosis a secret, I wanted to share my IBD story with others, so I created my blog and Instagram @Gutsy Girl Diaries in March 2018. Since then, Gutsy Girl Diaries gave me the courage to also share my journey with colorectal cancer and life with an ostomy. It is my goal to use social media platforms to advocate, educate, and break the stigma associated with invisible illnesses and disabilities. I continue to reach so many individuals, make so many meaningful connections, and collaborate with brands I love.

Having an online platform to speak my truth and resonating with others warms my heart so much.

For other ostomates, IBD warriors, or those that may soon be living with an ostomy, self-advocacy and having the courage to share your story is so important. I feel that having a good relationship with one’s medical team as well as a good support system is fundamental because it really does take a village! My ostomy surgery was one of the hardest experiences I’ve had to endure.

There were a lot of silent battles, a lot of uncertainty, many struggles with body image, a lot of wondering, “how will I ever overcome this”, but most importantly, a lot of resilience.

Continuing to share my journey gave me a sense of freedom I didn’t know existed. I have learned that living with an ostomy is a process of patience, grief, forgiveness, and perseverance.

My ostomy not only saved my life from the spread of colorectal cancer, but it also gave me my life back after living with IBD for over 25 years. I now live a happier, healthier life - one I didn’t know I could have.

Be proud of your body - it is your home, and a place where you are meant to feel completely at ease.

So be bold, be confident, and wear your ostomy loud and proud!

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