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 |