When I first came out of surgery, my plan was not to tell my children about my stoma. I was struggling to come to terms with it myself, so the thought of explaining it to anyone else felt impossible.
Coming to terms with my stoma
My stoma surgery was an emergency operation, which meant I had very little time to process what was happening. I didn’t want a stoma, and in those early days I didn’t even want to look at it, change it, or talk about it. Because of that, my initial reaction was to keep it from my children.
A couple of months later, I was told that my stoma would be permanent. This was an incredibly difficult time for me. I had held on tightly to the hope that one day it would be reversed, so hearing that it was permanent felt like a huge blow. It was at that point that I realised my stoma was going to be a long-term part of our family life, and I would eventually need to talk to my children about it.
Talking to my children
At the time, my boys were very young, so I knew their understanding would be limited. Rather than sitting them down for a big conversation, I let things happen naturally. Whenever they saw my stoma bag or noticed me changing it, they would ask simple questions like, “What’s that?” I would explain what it was and tell them that it had saved my life.
One of my biggest regrets is that my children saw how upset I was about my stoma in those early days. They witnessed my worries about how other people might react and picked up on many of the anxieties I was carrying.
One day, my son said something that completely stopped me in my tracks. He told me, “Mummy, if someone laughs at your stoma on holiday, I will punch them.” It broke my heart because I realised he was worrying about me.
At the same time, it became a turning point. I didn’t want my boys feeling responsible for protecting me. It made me realise that I shouldn’t be spending so much energy worrying about what other people might think. This wasn’t something I had chosen and it certainly wasn’t my fault. Slowly, I began to embrace my stoma instead of trying to hide it away.
Making it normal
As the boys became more curious, I became more open. They received some Buttony Bears, which helped start conversations, and we also read the Buttony Bear book together. I allowed them to see me change my stoma bag and even let them touch it.
Like many children, they asked whether it hurt. I explained that it didn’t hurt at all and that, in fact, my stoma helped me feel better and stay healthy.
I also wanted them to see that having a stoma wasn’t something to be ashamed of. When we went on holiday, I wore a bikini and let my stoma be visible. I wanted them to understand that it wasn’t something that needed to be hidden away. Over time, seeing my stoma simply became normal for them.
What my stoma has taught my children
As the years passed, the questions became less frequent. My boys now see my stoma as just another part of me. It’s simply normal life.
Looking back, I believe my stoma has taught them some really valuable lessons. They have learned that people can look different, have different medical conditions, or need different things to stay healthy, and that none of those differences should be judged.
Most importantly, they have learned that not everyone is the same, and that’s absolutely okay.
