Content warning: contains S**t

This is a blog post I never thought I’d write and if you are squeamish or don’t like conversations about bodily fluids then look away now.

I feel compelled to write because this weekend it is Stoma Aware Day or World Ostomy Day if you want to go global.

So, let’s start from the beginning with the obvious question, what exactly is a stoma?

A stoma is an opening on the surface of the abdomen which has been surgically created to divert the flow of faeces or urine. And it is estimated that one in 335 people in the UK are currently living with a stoma. Taken from the Colostomy UK website.

Chances are if you know over 300 people one of them might have a stoma and you might not even know because it can be a very private thing that they don’t want to discuss. How many of us like to talk about our toilet habits if we poo normally, the idea of pooing into a bag stuck to your tummy due to rearranged internal plumbing is quite a lot to get your head round.

I have written about having a stoma, I’ve never been secretive about it. Mine was created during surgery for bowel cancer. It ended up being an emergency procedure, but I knew before I went under the anaesthetic it was a possibility, although I had no idea what it would actually entail – it was a steep learning curve waking up in critical care – but that another long story.

Cancer is only one reason people have stomas. Others have them because of bowel and digestive complaints such as Crohn’s and colitis. Often their quality of life is greatly improved as their symptoms are alleviated and they don’t need to access the toilet so frequently therefore enjoying a more “normal” life.

However I found a new statistic recently…

Over fifty percent of people living with stomas suffer from leakage which means access to public toilets is vital to enable them to live fulfilling lives and ensure they do not face social exclusion and isolation. https://www.colostomyuk.org/campaigns/stoma-aware-day-2024-do-you-see-me/ 

I am fairly lucky, leaks when I am out and about are few and far between. I usually get to a toilet in time for a quick bag change and no one is any the wiser, even if I spend longer in the cubicle than most. I carry a small pouch of supplies with me, but to be honest it only happens about three or four times a year.

The worst one was about a year ago when I went to visit a friend for a few days. I was driving up the A1 and suddenly became aware of a sensation akin to having a balloon fill up with water in inside your clothes.

I slipped my right hand just inside my seatbelt on my tummy and yes I was leaking!

Fortunately, I found a service station with a disabled toilet not too far away. I grabbed my stoma supplies from under the passenger car seat, where I keep them for emergencies. As I was visiting friends, I had an overnight bag in the boot with everything else I needed. I emerged a new woman.

As I said this happened a year ago and I’ve had nothing as dramatic happen to me since. At night I tend to wake up before a serious catastrophe occurs. Although I have been known to have a 3 a.m. shower and have to change the bed. Living alone, sometimes has its advantages.

However yesterday, after reading the statistics about leakage I had another major incident – very similar to my A1 experience. Only this time I was much closer to home. A good thing right?

Hmmmm, well I knew where I was going and I knew there was a petrol station up ahead, but sitting in a car breaking for the roundabout, then accelerating means you are almost pumping the bag to squeeze a little bit more of the offending fluid out.

I’m sorry if this is all gross, I did give you a warning but this is reality, not just for me but for many others. Often people are denied access to a toilet in an emergency, or get disgusted looks when exiting a disabled toilet but looking perfectly able – not all disabilities are visible!

I reached the services, grabbed what I needed and was thankfully unchallenged when I slipped into the toilet at the back of the shop. It was spacious with a sink that was most welcome. The floor was wet with an A frame cleaning sign in the middle. It didn’t look like it had recently been cleaned but it certainly wasn’t the worst I’ve seen.

I then proceeded to strip off and clean myself up. 

"Sorry it's engaged!" I called out a couple of times when someone tried the door

Now I’d only been out for lunch and I don’t regularly carry a full spare set of clothes with me.

However, the chance of a mooch round the charity shops after lunch was too good to miss and I’d bought myself a new dress, well I say dress, one of those shorter ones I prefer to wear with leggings but I emerged bare legged with my boots and socks on carrying my rolled up stained clothes.

Cath Kidston dress - a lifesaver!

No body saw me – phew!

Only I had to stop for printer paper on the way home so I pulled my coat over the short dress, it didn’t cover me any more than the dress did. Then I dashed into Currys, trying to act all nonchalant and not spend all the time pulling the hem of my skirt down to cover my legs – never my best feature – just keep smiling.

At least I didn’t bump into anyone know…

“Sarah!” Oh no too late.

I apologised for the way I was dressed.

“Your boots match your dress, you look lovely.”

Ah a true friend, someone who overlooks my eccentricities and quirky dress sense, and sees the real me.

I could have lots of labels if I want them, a writer, a mother, a widow and an ostomate but none of them define all of me.

Please be kind if someone takes longer in the loo before you. Don’t tut if someone walks out the of disabled loo but looks perfectly able, because I have a radar key for legitimate reasons and I am not afraid to use it! 

And I am NOT alone!

a radar key used to access disabled toilets and a stoma bag