Sometimes
when I write I find that I dance around issues, trying so hard to
miss out the less pleasant bits of my life that I tie myself in
knots. But the world is changing, particularly the world of social
media. “Honesty” is clearly now acceptable, and so I am going to
give it a go. Warts and all.
You
see, my bowels don't work properly. I have written before about the
extensive surgery I had to have 30 years ago (10 operations over five
years on my lower abdomen, three more 12 years later, and two for
altogether other reasons) and I have hinted at the long period of
recovery I had back then. I wrote about it positively because it
certainly was positive – and it fed my love of cycling, which has
grown and grown ever since.
But
my treatment also damaged my bowels. For a time whilst I underwent
radiotherapy I had a temporary colostomy, and I was too ashamed of it
even to tell some of my close friends. I kept the full “horror”
of it from my parents, with whom I officially lived at the time (I
was 19 years old). I was traumatised – and I just couldn't wait for
the colostomy to be reversed. I was scared it never would be. When it
was, probably too early, I got bowel adhesions. I couldn't eat for
six weeks and I went down to 5 st 10 lb. Eventually, after accepting
the inevitability of death, I somehow recovered. My body just decided
to get better.
But
the bowel adhesions persisted, and the radiotherapy had burned me
inside, scarring me irreparably. Ever since then I have had episodes
of blockage which are excruciating. I also have sickness, diarrhoea,
constipation, faecal incontinence, and never, ever, a fully normal
day. Each day I go to the loo between 0 and 20 times, at any hour of
the clock. I get virtually no warning. In thirty years, I have
probably had a “one
trip to the loo and then forget about it”
day maybe half a dozen times.
I
had an unconnected operation five years ago, and the surgeon, in
addition to doing the job he'd planned, spent 2 ½ hours dividing
adhesions. He said to me afterwards that my bowels were such a
jumbled mess that he was surprised I could go to the loo at all.
This
condition has a name no-one has heard of, and it's not life threatening. The doctors are
not interested because nothing can be prescribed for it. And yet the
fear of it affects me every minute of every day. It's cost me my job,
and it regularly renders me housebound. It distresses my husband
monumentally. It stops me riding my bike, and it interferes with
every plan I make.
So
my point – what is it? Well it's this. If you search Youtube you
can watch a lovely pretty 23 year-old girl called Laura change
her ostomy bag.
You can see a gorgeous guy demonstrate what he does with his bag to
secure it when he's surfing. You can see a model in a bikini, her
ostomy bag showing above her bikini on her simply stunning body.
These
people don't hide their issues, they get on with life, honestly and
grasping every opportunity. I applaud the element of openness and
honesty that social media has facilitated for these people and I
admire each of them immensely. Social media helps people to find
support amongst others who are in the same boat as them, but half a
world away. The support changes opinions, and the exposure changes
attitudes. There are critics, but I am not one of them.
If
I'd been able to be find inspiration from these people thirty years
ago, I think my attitude to my colostomy might have been much more
positive. And now, on some of my worst days I find myself thinking –
how might my life have been, if I'd kept that bag?
