There are 100,000 of us among you. We lead quiet lives, unnoticed, almost surreptitious. We hold down ordinary jobs; most of us have families; to all outside observation we are normal. And yet we aren't. There are occasional tell-tale signs: I don't go swimming and I don't sunbathe; another of us may not join the lads for a shower after football, but goes home in his tracksuit. You might wonder why someone in robust health has the brass to use the disabled toilet.
When we get together, we're wary at first. "Are you one of us?" I was asked recently. There is a sense of trepidation before you own up, a moment of release when you do. Once common ground is established, we tell stories that bind us and exclude the rest of you. "I was in a car in the middle of Bath trying to change it ..."; "When I started to take off my shirt, I realised. 'George,' I said, 'I've got something to sort out' ..."
We have a network of discreet, confidential communication. A single phone call and a box will be delivered next day by a private delivery company. I know the driver who delivers my boxes: a few months ago, he stopped me in Skipton - my local town, but 17 miles from where I live. "I've got a delivery for you," he said in friendly recognition, and handed it over there and then. But he didn't know what was in it, any more than you do, even though you, the taxpayer, stump up the cost.
What keeps the 100,000 silent and unnoticed? What do our fellow citizens subsidise, yet not recognise? The coarse, brutal answer is "piss and shit". A more decorous description is to call us "ostomists". You will search the Oxford English Dictionary in vain for the word. We are people who, for one of many reasons (rectal cancer in my case), have undergone a urostomy, an ileostomy or a colostomy. We have a piece of bladder or bowel brought to the surface of the abdomen - it's called a "stoma" (hence ostomists) - and through it we piss or shit. A urostomy relieves the bladder, an ileostomy the upper part of the gut and a colostomy - which I have - the lower part of the gut. We have no bladder or sphincter control - the operation that created the stoma removed it or bypassed it - and so we are at the mercy of what is euphemistically termed our "natural functions".
A relatively ordinary life is made possible by the application of a colostomy bag - more politely called a "pouch" - to the stoma, where it receives the excrement. Most bags stick directly to the skin. Stomas are quite individual in profile, and since waste against skin causes soreness, the entry to the bag is cut to size. The ostomist can do this personally, but it's fiddly at best, and if, like me, you have neurological problems (mine were caused by chemotherapy), impossible. Most ostomists have their pouches cut to size by their appliance suppliers, who use a template made by the stoma nurse.
In supplying ostomists, the NHS is at its best: supplies at present are reliable and discreet. Some are supplied by pharmacists but they don't - can't - offer a cutting service. So 80% are supplied directly by appliance companies. I phone my supplier, place an order, and within a couple of days the delivery company leaves my box at the front door. As well as essential equipment, I get free dry wipes - vital for hygienic changing and unavailable from shops - and free sprays to deal with smell (it is a smelly, mucky business.) Thus I can pass as normal.
Admission to this select band tends to be involuntary. Most ostomists have had cancer, or chronic disease such as ulcerative colitis, or sometimes a birth defect. After my abdomino/perineal resection (to cut out the tumour that would otherwise have killed me, surgeons had to excise part of my bowel from the front and my anus from behind), the practicable route for waste disposal was to my abdomen. On the morning of my operation, Jean Ross, my stoma nurse, drew a small circle in blue pen to the left of and a little below my navel, on the belt line. "We can't put yours any lower because you wouldn't be able to get a pouch on properly," she explained, indicating the curve of my tummy which was responsible.
When I came to after the operation, I had a round dark pout, about the size of a 10p piece, where the blue circle had been. In the following months, I had to learn to manage it, unpredictable and uncontrollable as it is, using kidney shaped bags that cling there day and night. I accept it because it's there, it's part of me. I sometimes get angry at what it does (pouches are usually reliable, but most ostomists have at least one tale of a failed pouch), but not angry at its very existence, since mine was prolonged by having it made. I change the bag before I go out. I check it occasionally. I am unfazed by a fart from my tummy. Sometimes a familiar, warm smell informs me that it is working. In case of emergency, I have a key that enables me to use disabled toilets.
Each of the ostomies has its own national association which publishes a magazine or journal containing useful information, tips (such as carrying stoma equipment in your hand baggage when you go abroad) and heart warming stories. There are local groups too, which meet, often working in conjunction with the local stoma nurse.
You might hear more from us in the time to come. In a consultation about the cost of providing stoma equipment, the NHS has now made proposals that would have the effect of causing my appliance company, and other small appliance companies, to close. We might find it necessary to break cover and complain. And when we do, we might make it into the Oxford English Dictionary.
· nick@cowsidebeck.fsnet.co.uk
