Fashion marketing manager Matilda, now 27, has lived with a stoma since she was a teenager. It changed her life completely, setting her on a positive path to the future.
I live in Sweden, and my big passions are travel and adventure. I love having the freedom to travel, explore, and completely immerse myself in a culture. When I was constantly unwell with ulcerative colitis, it felt as if my world was closing in on me. My stoma has been my ticket out of that situation. I’ve travelled to Fiji, lived in major cities like New York and Singapore, and visited remote beaches and landscapes -- all of which wouldn’t have been possible without my ostomy.
Raising awareness about life with a stoma
I’m longing for New York again -- the big city, the rooftops, the excellent walks, and the people. I adore the pulse and tempo of city life. I could also get awesome photos there! When I was there last time I wasn’t as focused on social media, but now I could get some great images showing off my stoma, which I could share. I’m really passionate about increasing awareness of what it’s like to live with a stoma and making sure people know how good life can be. Doing that through social media, especially on Instagram (where I’m @matildaahdrian ), started as a hobby and has now become a big part of my life.
Now I can engage and connect with thousands of followers, and share my travels and daily life. I post pictures and videos of me posing for fun or showing how easy it is to manage my stoma -- even in a bikini! I started blogging before I had ileostomy surgery in 2011, just to fill my days and keep a diary for myself, but now it’s all about Instagram. The feedback I get from people is amazing and motivates me to keep going.
Connecting with followers around the world
My followers are mostly girls, but my direct messages (DMs) are from both girls and boys -- about a 60/40 split. They ask me all kinds of things, even about what to wear to the prom! Many older people also contact me to talk about their kids. Families share my stories and videos, which they say help increase their knowledge and reassure them that everything’s going to be okay – which makes me feel good.
My following is more international now that I’m posting in English. Social media has given me a voice and enables others to connect with me; it’s not just a one-way street. Often, people want to share their stories or fears, as it can be lonely when others don’t understand what you're going through. No one can describe how a stoma feels. It’s something you must experience yourself, so talking with someone in the same situation is incredibly valuable. For me, that’s the power of social media -- you can find inspiration, comfort, and something to hold on to. People have invisible struggles and you can’t always see that someone is sick, so it’s essential to speak about it.
I remember clearly what it was like to feel so ill all the time. I had ulcerative colitis from the age of 14, and it was challenging to find medications that didn't have side effects (my face swelled up for a while, and being a teenager, that was the worst!). It also was horrible to constantly feel feverish and be unable to eat or sleep well. I'm 27 now, but when I was diagnosed my illness and surgery were kept very quiet, and no one wanted to talk about it. I hated feeling invisible, so that's why I work with Dansac now and use social media to spread awareness about life with an ostomy. I'm living my life entirely normally – I just happen to have a stoma. So I'm happy if being open about my life can help even one person.
Feeling comfortable in my own skin
Keeping the skin around your stoma healthy is critical. Early in my journey, my peristomal skin was irritated and I also was anxious that my ostomy bag wouldn't stay on. So that's why I think we should be open and honest, and keep talking about problems that people with ostomies may encounter. If we flag issues for new users, they will know that they don't have to accept them, and can ask for and find solutions.
The quality of ostomy products today compared to what I was using 10 years ago is night and day. Manufacturers have improved their pouches significantly, which makes life with a stoma so much better. I use Dansac products and they work really well for me. I can have long showers, swim, travel, go backpacking, and my ostomy pouch just does its job.
Being able to manage your stoma and keep your skin healthy gives you a sense of control and empowers you to live your best life. There's so much fun and living to be done once you're comfortable in your own skin.
Living a full life with a stoma -- body and soul
I always thought a stoma was the last resort, my Plan B. But one day in the hospital, my fever was getting so high that the doctors had to stop my medication, and I had surgery the next day. It was all quite dramatic, so I didn't have much time to think about it or process it. But it did occur to me that this was my chance to get my life back. I didn't want a stoma, but it was my only solution, and it ended up making my life completely normal again.
After the operation, I remember being desperate to go on a school trip but I was still a bit too weak, so my friends took me in a wheelchair. That's when I realised that the stoma wasn't going to stop me from saying yes to things. I just needed to make some slight adjustments, and then I could do whatever I wanted -- and I still do.
It is my wish that those anxious about having a stoma can re-frame how they think about it. It's not the worst thing that could happen. For me, it was actually the best thing. The freedom it gives you is fantastic. For me, that means enjoying my studies, travelling the world, living on three continents, having a fashion marketing job that I love, and connecting through social media with thousands of people all over the world.
People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.
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