Wednesday, 11 January 2012
In The Beginning
Julie Andrews says you should start at the very beginning, but where is that? I guess it starts with the Crohn’s, the bag is in the middle, and thanks to that middle, the end should be fairly far away.
So I’m going to start with the middle – sorry Julie. The bag. I’m not going to go on and on about the bag, so concentrate. My bag is called an ileostomy, as opposed to the more commonly heard of colostomy. Because a colostomy has more recognition as a word, that’s what I claim I have when people look at me funny as I come out of a disabled toilet looking perfectly healthy. ‘I have a colostomy bag, okay?’ I say, slightly angrily, and their own slightly angry, a bit jealous, busting for a pee look softens somewhat. And then I lock the disabled toilet door with my special key and skip away. Last laugh mine, I think.
I’ve only had my bag just over a year. I’ve had Crohn’s for more than 30 years - having been diagnosed in my teens - and was very proud to get so far without a bag, and before I get ahead of myself I’m going to give you a glossary of terms. Kind of.
Crohn’s disease is ulceration of the digestive system that can occur anywhere from the mouth to the anus, but usually – as in my case – hangs out in the small and large intestines. As a last resort, surgeons remove the colon, leading to:
Ileostomy is an opening into the ileum, part of the small intestine, from the outside of the body, providing a new pathway for waste material to leave said body. In other words, a bit of intestine is brought to the surface of the stomach, over which a bag is placed to catch all the poo (I told you there’d be poo). The bit the bag goes over has a title of its own:
Stoma is the name of the bit of intestine that is brought to the surface of the stomach. Stoma is Latin for mouth. Perhaps there isn’t a Latin word for arsehole.
So now all that’s clear, I can carry on …
I’m very happy with my ileostomy – it’s changed my life for the better; I can do things I couldn’t do for years; I can eat things I haven’t eaten for decades, and I don’t have to worry about what I used to euphemistically call ‘having an accident’, which actually meant inadvertently pooing myself in public. My bag could leak, of course, and sometimes – rarely – does, but that’s not the same.
My Crohn’s was very bad. Some people are lucky and get it mildly; some people aren’t. I wasn’t. I tried every drug going and when they all failed, I spent three and a half years in bed, in agony, with various complications of Crohn’s as well as the Crohn’s itself; stopped writing which is supposed to be my job, and watched far too many episodes of Doctors before I finally realised I’d have to have an ileostomy. I do love my bag now, but I didn’t exactly jump at the chance to have one the first time it was offered.
In fact, the first time it was offered was in 1990, and I effectively said, ‘No thank you, I’ll struggle on for twenty more years if you don’t mind.’ And I’m glad I did. A lot of people with bags say they wish they’d had them years ago; I don’t. I think I had mine at exactly the right time.
So, now you know the medical stuff. I’m going to assume that knowledge from here on in, and not patronise you by giving you the same information again. I might tell you more details, but I’ll also be trying to prove myself a normal, middle-aged, slightly neurotic writer, mother and wife. Who poos into a bag.