A year before I ended up having my stoma surgery, I was told I would probably need one. I didn’t do it.
Not because I didn’t trust the doctors, but because I was scared. I’d heard all the horror stories, worried about what people would think, and convinced myself that life with a stoma would be awful. Looking back now, I wish I’d known then what I know now.
A year later, I was rushed into emergency surgery and didn’t really get a choice.
So, if you’ve recently been told you need a stoma, these are the 10 things I wish someone had told me.
1. It’s going to be okay
I know everyone says that, but honestly, it is.
When I was first told I needed a stoma, I thought my life would completely change for the worse. In reality, once I’d recovered, I was able to get back to being me again.
2. You’re not going to be the only person with a stoma
Before my surgery, I don’t think I knew anyone with a stoma.
Now? I realise there are loads of people living with one. Friends, work colleagues, parents at school, people you walk past every day. You’d be surprised how many people have one and just get on with life.
3. There is a huge stoma community out there
One of the best things I ever did was connect with other people who had stomas.
Whether it’s Facebook groups, Instagram pages like @stomatips, blogs, or charities like Crohn's & Colitis UK and Colostomy UK, there are so many people willing to answer questions and share advice.
If you’re worried, reach out. Chances are someone else has felt exactly the same way.
4. Lean on your family and friends
You don’t have to be strong all the time.
Recovery can be hard, and there will be days when you need help. Let people support you. Whether it’s making you a cup of tea, helping with the kids, or just listening to you have a moan, accept the help.
5. It’s okay not to be okay
Getting a stoma is a massive change.
If you feel upset, angry, frustrated, or emotional, that’s completely normal. Don’t put pressure on yourself to be positive every minute of every day. Give yourself time to adjust.
6. It’s okay to grieve your old body and your old life
This was a big one for me. You can be grateful for your stoma and still be sad about what you’ve been through. The two things can exist together. Feel those emotions, but don’t get stuck there.
7. Nobody will know you have a stoma unless you tell them
Honestly, this was one of my biggest fears. I thought everyone would notice. They don’t.
Most people have absolutely no idea I have a stoma unless I choose to tell them. And when I do tell people, they’re usually curious, supportive, or both.
8. Don’t be afraid to talk about it
The more I’ve spoken about my stoma, the easier it’s become.
Talking about it helps break down the stigma and often helps other people too. You never know who might be struggling with the same fears you once had.
9. The right products make all the difference
Don’t be afraid to ask questions. Speak to your Stoma Care Nurses, try samples, and do your research. What works for one person might not work for another, and that’s okay.
Finding the right products can make a huge difference to your confidence and comfort.
10. I wish I’d worried less
If I could go back and speak to myself a year before my emergency surgery, I’d tell myself to stop reading the scary stories and stop assuming the worst.
My stoma gave me my health back. It gave me freedom. It gave me the chance to be a better mum, partner, friend, and version of myself because I wasn’t constantly battling my illness. Was it easy? No. Was it worth it? Absolutely.
And if you’re reading this because you’re scared about what’s coming next, just know that I was scared too. But I got through it, and you will too.