Name: Sahara Fleetwood-Beresford
Age: 28
Location: Derbyshire
I had 6 surgeries within 7 years, 2 of which required ostomies.
I got sick fast. No warning and no long diagnosis period, so
in a sense I was lucky. August 2007 I started with frequent toilet trips, cramp
that meant I couldn’t get out of bed, blood and mucous. As is very often the
case, the GP said I had IBS and I waited for the medication to work for 2 weeks
before admitting defeat and going to A&E. By this time, I had lost 11lbs in
14 days and was very weak. I was diagnosed with Ulcerative Colitis within a few
hours of being admitted and after one week in hospital and my symptoms not
improving with IV steroid treatment, I had emergency surgery to remove the
whole of my colon (a subtotal colectomy) and an ileostomy formed.
To say me and my ostomy didn’t get on well would be an
understatement. My stoma was pretty flat so I spent most of my time worrying
about leaks and it did leak at night more often than it didn’t. I was
constantly suffering with burnt skin around my stoma which was itchy and sore. I
was ashamed and I didn’t want to go anywhere or see anyone.
I never had the chance to understand what was happening to
me. I was 19 years old and have never heard of IBD at the time of diagnosis,
and once I had been admitted to hospital and diagnosed I received minimal
information, other than a few booklets from Crohn’s and Colitis UK, but theses
didn’t prepare me for the seriousness of the disease. The books and the
hospital professionals insinuated that I would find the right medication and
live a long and happy life, even if it was controlled by medications. Surgery hadn’t
been mentioned as an option until I was told I needed it.
Truth be told I hated my life, I hated the disease and I
hated the bag. I isolated myself and I felt like I was the only one going
through it. I couldn’t wait to have it reversed, but when the time came to
discuss have a jpuch built (which was needed for reversal) I was hit the
enormous fact that this would have major implications on being able to conceive
later. It was a tough decision but just over a year after having the first
surgery, I went in for the second – the creation of the jpouch. A year after
that, I fiinally had my jpouch connected and my stoma gone! They were the worst
2 years of my life and I couldn’t imagine ever being ok with going through that
again.
However, after having my jpouch connected I suffered
chronic, recurrent pouchitis and cuffitis (the jpouchers version of proctitis).
Discomfort and running to the toilet all of the time and spasms up my bottom… none
of which were fun. No medications would work long term and I was told that I
may need to have my bag back for a while to give my pouch a rest or the pouch
could be classified as a failure and I’d be left with a permanent ostomy.
This was the worst possible outcome for me, and due to the
mind altering prednisone medication I was taking and the desperation I felt, I
had very calmly decided that if the time came that permanent was the only
option then I wouldn’t be sticking around on the planet to live with it.
It was around this time that I took to the internet, to find
and speak to other IBDers, and I am thankful for that decision every. single. day.
In 2014, after 2 years of progressively worsening pain,
meaning even a liquid diet didn’t help the agony which left me living on some
pretty hefty pain meds just to get out of bed, a barium enema showed a really
tight and long stricture leading up to my pouch, next to a short and slightly
less tight stricture. I was admitted for surgery less than a week later and
once in there, the surgeons discovered that the long, narrow stricture was in
fact twisted intestine and the shorter one was an abscess. I ended up with an
ileostomy once more as my jpouch had been torn whilst they were untwisting my
intestine.
This time it was different. This time the stoma was a much
better shape and I barely ever had a leak. I could eat whatever I wanted, I
could drink alcohol again, I had my life back! After meeting other IBD sufferers
and ostomy wearers online, I found I no longer felt like my life ended here. I
found ostomy covers and support underwear that meant I could wear normal
clothes without being paranoid all of the time that people could see my bag.
This time, I wasn’t embarrassed by it, I was proud of it, it was a reminder of
all the shitty things I‘d been through and survived.
I have now had stoma reversed once more but I know the
likelihood of needing a permanent stoma sometime in the future is a
possibility, but that’s OK. I know it doesn’t change who I am.
I am a fucking warrior.
I am an #IBDSuperHero.
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