Born in 1991 with an imperforate anus, a condition where the anal opening is closed or blocked, I have lived my entire life with a permanent ileostomy. As a child, I couldn’t fully comprehend why I had this piece of plastic attached to my side, leading me to sometimes intentionally remove it out of frustration. However, as time passed, I came to appreciate what this stoma was. Growing up with immunocompromised health and facing other chronic conditions like a liver transplant, I was homeschooled until the 5th grade. My parents ensured that my teachers never disclosed my ileostomy to avoid any potential bullying. Throughout my childhood, I kept my stoma a secret, wanting to be seen as just another kid on the playground.
At the age of nine, I underwent a significant surgery that resulted in the creation of two stomas: my ileostomy, which required revision, and a blind pouch. Eventually, the blind pouch was removed, and my second stoma, affectionately named ‘twoie’, was permanently closed. As a result of this surgery, a stoma reversal is no longer possible for me. Having lived with my ileostomy since birth, the idea of a reversal feels foreign to me. One unexpected advantage is the ability to sit in traffic for extended periods without needing to urgently use the bathroom!
Throughout high school, college and even in my professional life, I kept my ostomy bag a secret to avoid discrimination. It wasn’t until 2020, during the COVID-19 pandemic, that I decided to create an Instagram account to reach out to others who were experiencing isolation and living with chronic illness. Being permanently disabled at the age of 26, I no longer had to worry about potential job-related concerns if my story was discovered online.
When I began sharing my journey on Instagram, I discovered an incredible support system and was pleasantly surprised by the number of individuals who opened up about their own experiences with stomas in great detail. However, I also encountered some unfortunate situations. Certain posts where I showed my ostomy were flagged as ‘nudity’ by Instagram, resulting in the disabling of my account. Unfortunately, I’m not alone in facing this issue, as other users have had similar experiences. It seems that while celebrities and other creators could post provocatively dressed content, creators sharing their stoma stories were being penalised.
Platforms like Instagram, along with other social media applications, need to improve their ability to distinguish appropriate content from inappropriate content. There should be a better understanding of what can be shared online without fear of censorship or account suspension. These improvements are crucial for individuals with chronic illnesses, disabilities, and other diagnoses who wish to openly share their stories, spread awareness and educate others. By creating a safer and more inclusive environment, we can inspire and empower users to share their experiences while fostering a sense of safety and understanding.
On my Instagram page, I have shared various tips and tricks to make the process easier and more efficient. I have included some of these for you to read today, I hope they help!
Kelsey’s top stoma tips
- When removing the bag, use one hand to peel off the corner of the flange gently, while using your other hand to slowly peel it off to avoid pulling too hard on the skin
- Instead of using the large, flat scissors typically provided, opt for small cuticle scissors with a curved edge for a precise and round cut. The hospital scissors can leave jagged edges, making it difficult to change the bag properly. A smooth, round circle is best for preventing cuts to the stoma and ensuring a comfortable fit
- Avoid applying the paste directly on the skin, as it can create a sticky mess. Instead, dry the area, apply powder around the base of the stoma (to minimise burning), and put the paste on the flange, creating a ‘volcano’ mould. Press down to smooth out any air bubbles and ensure there is no air trapped in the tube of paste
- Creating a smooth mould helps prevent the paste from pushing up through the flange. Avoid having too much paste above the flange around the stoma, as it won’t adhere as well. The paste should be underneath the flange, bonding to the skin
- Flonase is not a tool I have used, as I believe in keeping the skin as dry as possible. Avoid using baby wipes or any oily substances on the skin. Stick to water, soap and toilet paper during bag changes. Personally, I prefer changing my bag at home after a shower, but everyone’s preferences may differ. Typically, my bags stay on for about 4-5 days to prevent skin irritation
- Sprinkle powder on top of the stoma.
Cuticle scissors
Kelsey’s ostomy kit
Kelsey is a content creator sharing tips from her ileostomy journey
Instagram: @thetinytransplantedwarrior