Jasmine's Story

So, i’d like to say I’m an average girl of 25. Been in love, lost

and lived my life to the fullest, but I suppose I’ve had a few more bumps than
average. I’d like to think I’ve overcome those bumps, swaddling myself in the
remnants of wonder woman’s clothes. Well, that’s what I tell everyone...

So where to begin. I’d like to start by saying my story is by no

means worse or better than any other person suffering with a disease or condition which has caused
them to have a stoma. I personally think we are all strong. We have all story
to tell but I hope by sharing this you know you’re not alone in your thoughts
and worries. Some of you may have a similar story and we can share them to make
the whole thing less of a taboo.



I was diagnosed in 2000 at the age of 10 with Crohn’s disease. I was
rushed into hospital after 2 years of being told I had irritable bowel syndrome
(IBS). Throughout those two years I had tried so many different diets in hope
of solving the blood pouring out of me on a daily basis. “Stop eating fats.
It’ll stop the cramps”. Being told this
over and over with different replacements of the word fats to wheat, lactose,
sugar. The list went on and shuffling my diet at such a young age was difficult
to understand, but deep down I knew something was really wrong. My mum thought
I was being lazy as I needed to sleep a lot and I found physical activity
difficult. I used to hide the cramps and pain as best as I could but there is
only so much you can do when you’re on the floor in the middle of Tesco’s
screaming.



I was rushed into hospital after lying on the sofa for a few days
and the final straw was being unable to get up to go to the toilet in time. I
collapsed in the lounge and couldn’t move. I vaguely remember being in A&E.
I recall the panic on my mum’s face as the doctors fussed around me, putting in
numerous cannulas, attaching oxygen masks, heart monitors. I just remember a
haze but I started to come around after 4 blood transfusions. I was transferred
to a specialist children’s unit in Southampton General Hospital where I spent a
month. I had all of the tests which now seem a simple part of a regular trip to
the hospital but back then it was daunting, scary. My level of understanding
wasn’t great. Yes, I felt like the oldest one in there at the age of 12 and
thought I could look after the whole ward. It was then it was confirmed it was
Crohn’s disease, which seemed to have remained in the large intestine, rectum
and stomach. I was given medication to help keep me in remission.



I thought I was cured but three weeks later I was back in hospital
for another week. Then another two weeks and this seemed to go on and on
throughout high school. I found keeping a group of friends very difficult at this
time which was hard. I had a large group of friends - popular girls - but none
were close nor understood. I was accused of truanting and mum received a few
phone calls from social services with regard to my attendance despite my mums
desperate attempt to keep some parts of my life normal by informing the school
constantly to get work for me to do to catch up in hospital. I was finally on a
drug which I felt was working for me in conjunction with steroids. This blew my
face up & I gained the name “hamster”. During this time (I was 14/15), I
got a boyfriend. He was 4 years older than me and to be honest he was a rock.
He was so supportive of all of my hospital visits which by this time were 4
times or more a year.



I had so many up’s and down’s but one of my biggest achievements was
actually getting all of my GCSE’s and A-Levels! If you have the condition, you
will know what I mean. I tried to act like a normal teenager in between my
bouts of ‘rehab’ I liked to call it. I think some people actually thought I was
a drug addict by this point, I rolled with that. Eventually I went to
university to study Nursing. This was extremely scary, I was starting a new
chapter leaving my home, friends, family and my boyfriend to go and live in
London.



I ended up breaking up with my boyfriend. I embraced the freedom at
university, quite frankly went a little mental and dealt with all of the
consequences at later dates. Running out of lectures to the toilet, missing
ones when I couldn’t get out of bed, hiding in the toilets so no one knew the
smell was me. I started to go down hill again, the current medication which I
felt was a wonder drug was ceasing to work. That’s when I started to experience
mental health problems. I had full understanding of my condition, understood how
it made me feel, understood what my options were and all the while I wanted to
remain as normal as possible. I craved so badly to be like my friends,
carefree, able to do as they pleased. I missed so many parties, spent so many
nights crippled in pain and missed a lot of university. Luckily I made some
amazing friends, as I didn’t have my mum nearby, who were so supportive
although some found it tiresome having to be rejected for the want of sleep. I
made it to half way through second year when I finally had to make the decision
to have a year out and have surgery.



I was confronted with the dilemma of having surgery or dying from
the complications of my condition. Sadly, as the surgery ended in a permanent
stoma I was almost tempted for the latter. I felt the darkness creep in.
Everyone reacts differently to the idea of stomas; I knew what it was but not
to the extent I needed to make an informed decision. I experienced a range of
different emotions but vividly I recall the feelings of anger, frustration and
an overwhelming sense of ‘Why me?”, but also hope. Hope that the surgery may
finally put me into remission and maybe, just maybe I would experience what it
was like to feel “normal”. The surgery was long, 11 hours to be precise. I had
a few complications during the operation and ended up being cut open when
initially I was to have these “cute” little scars. When I woke up, I cannot
begin to describe the feeling, but I liken it to being run over by a car. My
stomach looked a mess and no one prepares you for a swollen stoma with a clear
bag and blood all in it. I remember saying to myself “that’s not my body” and
passed out from the drugs thinking, I’ll deal with that later.



My journey to recovery felt like a long time. I pushed boundaries,
trying to regain normality as quickly as possible but if I have some advice for
anyone, just let your body heal! The hardest struggle for me was the change in
body image. Body image is our own mental image of our physical being, but is
influenced so much by society placing such an enormous significance on being
‘attractive’. It really hit home that I had changed and I really couldn’t cope
with it. I wasn’t feeling the benefits of remission as I was so sore from the
surgery and the longer I spent recovering and pondering everything it became
apparent that I needed to get some help. I was already on anti-depressants, I
have been since the age of 16. I think a lot of us with IBD know the battles,
so it’s been an on going thing.




 I eventually got help, a lot of it. Psychiatry appointments, psychology
appointments, CBT, you name it. Ultimately I came through the other side. I
started to pick up, feeling better about myself and
that’s when I wanted to feel a little special. I wanted some underwear which
made me feel feminine, as a big worry for me was dating and accepting the
stoma. I was single at the time (for information on sex and relationships -
click here) and this added an extra strain on my already lacking confidence. I
was then on a mission to hunt for the perfect lingerie for me. Not finding
something suited to my needs, I set about a mission to design my own. I never
knew it would blossom into the brand I own today. My brand all started as a
hobby, something to take my mind of recovering. I mentioned the idea to a few
people who I had connected with over social media and they all agreed there was
a need. I continued to pursue my hobby in all of my spare time. When I went
back to university, graduated (YES I DID!), started working and I was still
ticking along working on my business and eventually launched it in 2015. It has
been a huge success but still very small!





I’d
like to say I'm someone who has embraced being an ostomate. I feel so grateful
to have my life back and appear normal from the outside (with clothes on). I
still battle my demons and quite frankly still have a lot of issues with self
confidence. I try to share wisdom in making other women feel confident in
themselves but sadly, I am not truly at that point myself. I have participated
in charity events, calendar photo shoots - yes you heard that correct and
always try to challenge my thoughts and perceptions. I have more good days than
bad but my mental health is severely affected not by my stoma but more the way
I look! What I’m trying to say is that despite having a stoma, it does not change who you are. You are still you, albeit you’ve been
through a lot and come out the other end. You have become more resilient and
damn, a hell of a lot stronger but at the end of the day you are the wonderful
incredible person you’ve always been!



I have always pushed boundaries when it came to being told - “It’s advisable not
to do this with a stoma” - I’d try it anyway to see what would happen. I went to
India for a month backpacking (thats me top right on xmas day!), I've eaten all
“prohibited foods”, pushed my sexuality and quite frankly it was all to prove a
point to myself that, by god, I will not let my ostomy stop me. I will take
over the world eventually ;)

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