Accepting My Life With A Stoma

Sarah Smith Hospital

I was diagnosed with ulcerative colitis (UC) at the age of 16 and had a very tough 13 years with UC until my emergency ileostomy surgery in April 2019. My life has changed a lot since then and I’m now aiming to raise awareness by showing everyone that just because you have a stoma, it doesn’t mean your life will be worse. 

Learning that you need stoma surgery can be difficult…

I needed emergency surgery, and had two days to come to terms with it. In one respect, I was quite glad that I had to have it as an emergency as it took the difficult decision out of my hands. I had always said that I would never want a stoma and I thought it would be the end of my life – I was wrong!

Having a stoma has given me a new lease on life that I never knew I had. I have been able to do so much more than I could before and doing it pain free is the best part!

Here are some of the tips that helped me come to terms with life with a stoma (though everyone is different):

Name your stoma

The first thing I did was name my stoma, she’s called Stella. For me, this made it real. It made the fact that I now had a new body and a new way of living, a reality. I think naming her and making it real was the first big step. It also makes it easier when I talk about her with friends and family. I can say, “Oh I just need to go and check on Stella” rather than announcing that I’m going to empty my bag. And now if my friends or family ever want to ask, they say, “How’s Stella been?” and it just makes things a lot more relaxed all round. 

Looking at your stoma

This was hard to begin with. I remember the first time I looked at her I cried... and I probably did this more than once. Looking down at my previously smooth stomach and seeing something strange was difficult. But it’s no longer strange because the more I looked and the more I got used to changing her, the more it helped. Don’t just have a quick look either, really look at your stoma. Look in the mirror and when you are in the shower – get to know this new part of your life.

Being open and honest

I have found that being open and honest about my feelings about my stoma has really helped. And it hasn’t just helped me, it has made the people around me more comfortable too. By being honest and telling them about Stella and how it felt, how surgery was and how tough it can be, helps people to support you. Don’t get me wrong, I don’t tell the whole world, but I tell the people who need to know. If anyone who doesn’t know asks about it, I explain to try and help educate them about life with a stoma.

My support network 

This is so important: surround yourself with your loved ones. My family were my absolute rocks during this time. I was in hospital for 17 days (ten before the surgery and seven after) and they visited me daily to keep my spirits up. 

Post-surgery, they were amazing too. I was very fragile after surgery and had so many different emotions, but by having them around life was made just that little bit better.

If you haven’t got a family support network, my advice would be to look online at forums and support groups, they are amazing, and you will find some brilliant friends and advice online – me included!

Being positive

Being positive has massively helped me. Stella has made me feel so well I just can’t believe it; I go into each day cherishing it, as before now I hadn’t had many well days in my life! 

I can’t believe how much my perspective has changed since having surgery and I’m excited to continue learning about this new way of living. You can keep up with me and my awareness raising activities on Instagram.

“Having a stoma has given me a new lease on life that I never knew I could have.”

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by Sarah Smith

Sarah Smith

About the author

I was diagnosed with ulcerative colitis at the age of 16 and underwent emergency surgery in April 2019 which left me with an ileostomy. I love my life with a stoma and my aim is to spread positivity and awareness about IBD/stomas by giving realistic points of view from my journey so far. You can follow me on Instagram.