My Stoma Story – Stoma Aware Day

My name is Suzie and when I saw that it was stoma aware day I jumped at the chance to get involved to help raise awareness and the importance of what it is like to live with stomas and how it is managing it day to day.

On march 30th 2026 and 1st April 2026 I had two emergency operations which left me with two stoma bags. It wasn’t planned, but my goodness it’s turned my whole life upside down. I didn’t know how I was now going to live my life with them because it was so alien to me. I had no idea how to navigate life and learn to live it either. But I have learnt along the way, and it’s changed my life but for the better.

I think sometimes it’s hard to see the struggle daily on what it’s like to live with stomas because people don’t always see the bad days. On the outside you can appear to be doing okay and adapting well but when it comes to constant bag changes, or leaks, or bags coming off, it’s absolutely draining. It’s important to understand that not all stomas are a choice. For some people it is life saving, and in my case it was. And for some it’s allowing them to live the best quality of life due to illnesses, or conditions that may be causing the bowels to no longer work or making life unbearable.

For me I find it’s crucial that patience and kindness is essential when it comes to people with stomas. For example when it comes to using accessible toilets and emptying or changing a bag, it can be hard to not feel rushed especially if there is a queue waiting. I recently went on holiday and I was terrified about having to use a public bathroom. I found an accessibility bathroom which I used however it was a cubicle at the end of the normal toilets with no changing table, no sink, nowhere to hang the things I needed and I felt under pressure to not take up too much time. I wanted to do it correctly and well to prevent any further leaks or issues occurring but I just needed a bit of time. I was so conscious on taking too long especially as people can’t see stomas if they’re not on show so I didn’t want people to think I was using the toilet just for the sake of it. So having that understanding that not all disabilities are visible is so so important.

When I first started my journey after the surgery I was so worried about what people would think of me. I’d heard such mixed opinions on people with stomas and how they are unclean, not hygienic, smell and awful to live with, and that terrified me. It reinforced the belief that this was it for me now, that was the end. But that isn’t the case at all! Stomas are quite the opposite! I have never found once that you can smell the stomas, the stool goes into the bags and unless there is a slight leak or anything happens then you really cannot smell anything. You learn in hospital how to change your bags and clean them and you really do pick it up as you go along! You don’t need to disinfect around the stoma, you just ensure that is clean and dry to prevent irritation to the skin. Good handwashing, and it works just like any normal bowel would. The only difference is that it goes straight into the bag. I know it’s easy to know what to think or do at the start because it’s a new life ahead, but it’s all about keeping an open mind and you’ll really start to see that aside the tough days, it’s really not bad at all. It’s given me the quality of life I had lost for years and years.

I’d really like the public to hear that having a stoma bag in any form is not the end for you. It doesn’t change you as a person. You are still you. You are still amazing and strong and brave. But it’s given you you’re super power. You can do absolutely anything you want to just like any other person can. I didn’t think I’d ever be able to shower again, or swim or go in hot tubs, but you can! And I did! You can eat what you want, provided you know what can or can’t block it so just be mindful of that! But you’re not just getting your life back, you are getting a brand new one. My stomas have changed my life so much, it’s saved my life, and I could not be more grateful for them. It’s the best thing that’s happened to me because I can now live! And you can too!

How You Can Get Involved

You can now visit the Stomas Unlocked campaign to learn all about each of our campaign initiatives, as well as discovering the many ways you can support us across all three themes.

We hope you will join us as we build towards Stoma Aware Day 2026.

Together, we can Unlock Understanding. Unlock support. Unlock Choice.