24-year-old Hayley has had short bowel syndrome with intestinal failure (SBS-IF) since her teens. Watch this video to find out how she grew up with the condition …
I first met Hayley when she was I think 16.
She was very, very shy, very timid.
Very to herself.
Before short bowel syndrome intestinal failure,
I didn't worry about things as much,
[I was] a lot less anxious.
When I was 15
I ended up having emergency surgery
and I got my first ileostomy.
I didn't have that regular
teenage life
that everyone else did.
I was stuck in a hospital bed
hating life.
Last year we went to Download Festival,
which was incredibly fun,
but also stressful at the same time.
Making sure we got back,
got back into the medical unit
to be able to put her TPN up.
So I'm always thinking
about either my stoma or my line,
there's always something ticking in my head.
My central line is used for
feeding TPN.
So I connect it up to
an intravenous feed every night.
My life doesn't revolve around it
but I have got to work a lot of things around my PN.
I often get questions
of people going "what's that on your chest?",
and it's hard to explain sometimes
because people don't understand.
You can be trying to get on with your day,
and it's really hard because you don't have the energy to.
Just trying to fit everything in and still get enough sleep
and enough rest to do the next day.
Seeing Hayley on a night out
is completely different to if I go out
with another group of friends.
It is more difficult for her to choose an outfit
that she's happy with,
that she's covering certain areas.
She's got to be careful of what she's doing
she needs to make sure she can
get to the bathrooms if she needs to go to the bathroom and
regular stops, and also
getting back home on time
and to be able to set her TPN up.
I think the last ten years for Hayley has been
incredibly hard.
I don't think many other people could do that.
I'm quite proud of myself to be honest.
I've not let it stop me
from doing what I want to do.
A journey of building strength and confidence.
Just getting on with life
no matter what it's thrown at me.
My next operation
is going to be looking at getting rid of the fistulas
that I've got at the minute.
I am terrified, to be honest,
because I always think worst case scenario.
it will turn out
right for a change.

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