Light on a Dark Day

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?