My journey has been a little different to some and I have never really got to the bottom of
my problems – bottom being the word of the day as you’ll see.
For the first 30 years or so my medical history was fairly unremarkable. I had my son Oliver
in 1997, followed by Madison in 2003. Maddie was on the big side, weighing over 10lb and a
very rapid labour, with her pretty much shooting out at the end. Looking back I suspect this
was how my issues first started, but at the time all seemed well.
I had my ovaries removed in 2005 as a precaution after losing my mum to ovarian cancer in
her 40s and about six months after the op I got some bleeding. I did what a lot of us women
do with ‘downstairs business’, I ignored it, assuming the HRT wasn’t quite right. After a
while I realised to my absolute horror that it wasn’t just blood but poo too. Coming out the
wrong way. This was a terrible time for me and I told nobody for months as I felt disgusting.
I finally plucked up the courage to go to my GP who referred me to a gynaecologist. They
took one look and sent me to straight to Ian Lindsey’s colorectal clinic across the hospital.
I had a rectovaginal fistula, a connection between two parts which shouldn’t be joined. In
my case it was very low, so more accurately an ano-vaginal fistula. I needed surgery but was
told the success rate was 70% so was very relieved, I could get it done and get back to
normal. I had a seton fitted a few weeks later to allow drainage and to promote growth of
healthy tissue then the repair a couple of months after that. All was fine for a couple of days
but then the repair failed, and spectacularly.
This was the absolute low point of my journey. The symptoms got much worse overnight. I
leaked poo constantly and daren’t leave the house. I ended up back in the hospital at 6am
on a Sunday having been up all night. My son’s 10th birthday when Mr Lindsey uttered the
words ‘I think it’s best if you have a colostomy’. A colostomy? Those were for old people not
a 34 year old mum! Would I smell? Could I go to work? Would everybody see it?
He wanted to do it there and then but I had 20 boys arriving for a go-kart party in a few
hours so I said I needed to get home. Of course, I put on a brave face at the party despite
being in absolute tatters inside. That’s what mums do. We were also due to go to Cornwall
the next week for a family holiday so I decided I would survive with very little food and lots
of Imodium, but after a couple of days it became clear this was a silly idea. I was showering
umpteen times a day and was sacred to leave the house let alone go on holiday. So after
many tearful conversations I sent my husband Steve and the kids off to Cornwall and my
dad took me to hospital to see the stoma nurse ready for the surgery. Simon Turley was the
stoma nurse who dealt with my fears, tears and endless questions. What an absolute star he
was – he calmly explained everything and I came to realise this was my only way forward if I
wanted a normal life.
The stoma surgery wasn’t a walk in the park but after a few weeks physically I was doing OK.
The terrible fistula symptoms had gone and the biggest thing for me was mentally accepting
my new plumbing. It was like having a new baby to look after and was terrifying, but the
stoma nurse team were amazing – they ensured I had the products I needed to feel secure
and confident.
And you know what? I didn’t smell and nobody knew it was there if I didn’t tell them.
Around 1 in 500 people in the UK have a stoma, so it’s quite common and as I’d never
noticed one I began to realise nobody would notice mine either. I found stoma support
online and found groups of people who knew how I was feeling – the relief to speak to other
people in the same boat as me was hard to describe. My family and friends were amazing
but nothing beats speaking to someone who has been there.
My stoma was temporary – another fistula repair in three months then it could be reversed.
Or so I thought. Four years and a total of seven repairs did fix the fistula eventually. Mr
Lindsey referred me on to Bruce George who had experience of using the gracilis muscle in
this area and that finally did the trick, but unfortunately all of the repairs had damaged my
sphincter muscle so I had to keep the stoma or be incontinent. I was devastated.
However, by this point I had begun to get involved in stoma support as I desperately wanted
to help people be less scared than I was when I faced my surgery. I was a trustee of
Colostomy UK, working full time, going on holiday with the family, and essentially doing
everything I wanted to. So after a short time of feeling sorry for myself I realised this wasn’t
going to go away so I had to get on with it.
Over 14 years on I still don’t particularly like my stoma and I do have days when it gets to
me, but I am damned if it is going to rule my life. I am a huge advocate of colostomy
irrigation which allows me to manage my stoma to my timetable and gives me so much of
the control back. My stoma has also brought so many good friends to me and opened up
doors I’d never imagined. I work full time at the University of Oxford in a team developing
therapies to treat Duchenne muscular dystrophy and I love my job in research, but as well as
my ‘proper’ job I have so much going on in the stoma and colorectal world now too. I am a
member of the Patient Liaison Group for The Association of Coloproctology of Great Britain
and Northern Ireland and sit on a growing number of steering committees for clinical
studies. I am a Patient & Public Involvement member on the Specialist Colorectal Clinical
Reference Group, a Coloplast Consumer Ambassador and a council member of the MASIC
Foundation. Previously I was a Volunteer and Trustee of Colostomy UK and a Patient Advisor
for the IDEAL Collaboration. I am passionate about being a voice for patients in both support
and research to ensure they have the best possible outcomes.
I’ve had further surgery with Mr George for a parastomal hernia plus I had my rectum
removed due to a few problems so am a proud member of the Barbie bum club (think about
it….). And I never did get to the bottom of what caused my fistula so I guess it will remain a
mystery but I am very much at a point that it is what it is and there’s no point in dwelling on
it. Life with a stoma is a good life.
I am very grateful for the treatment I received in Oxford, although I’m sure the surgeons will
agree I wasn’t a very patient patient! The stoma nurses are a very special group of people
who have been with me every step of the way and are still at the end of the phone if I need
them. I see them more in my voluntary roles now than as a patient but it is a huge comfort
to know they are there when I need them. Thank you all, you rock!