Thursday, 8 March 2012
As You Like It
I’d been living with the bag and feeling well for a good few months when I went to see the surgeon. He was pleased with my progress, I was thrilled with it and so grateful to him and his team, not to mention the NHS, without which my family would either be bankrupt with me and my bag, or a smaller family with enough to live on and no mother. It’s that simple. And if you’ll allow me a short soapbox moment, I really hope that if you’re reading this, you’ve also signed Dr Kailash Chand’s e-petition and if for some reason it’s slipped your mind or fallen off your to-do list, then you can do it now by using this link here. It was already shamefully ignored some 10,000 people ago, but Cameron and Lansley and the Tory government are determined to push through a bill that will destroy the NHS and while we are clearly not being heard, we can at least add our name to show that we want to be. And don’t fool yourself into thinking you hardly use the NHS and it won’t affect you, because one day you will, I can guarantee you that; and if you find you have to pay for it, don’t let that be because you did nothing. (A quick addendum is necessary here as Shadow Health Secretary Andy Burnham has guaranteed that the Bill will in fact be debated and voted on in the House of Commons on March 13th. You should still add your name though. The more signatures, the more of us there are to try to ignore.)
Okay, now slipping elegantly off that box and back to the story that the NHS has kept me alive to tell. So, after a few minutes of mutual admiration, ‘you’re doing so well’, and ‘thanks to your sterling work’, and ‘your stoma is so pretty’, my surgeon reminded me of something I’d been tirelessly not thinking about since I’d first realised it was an issue. There was another operation I could have. One I probably should have, but that was actually optional. It’s called a proctectomy and it is basically the removal of the rectum. In my case, it would mean my ileostomy was permanent, something we’d both already agreed upon, and so the anus would be sewn up. That’s right; my bum would be sewn up – there’d be no hole there. You’ve got to admit that’s weird. It would mean the Crohn’s that was still in my rectum, though mild now, would be gone forever, that the likelihood of bowel cancer was reduced, and that the mucus fistula that I’d had and that had necessitated a second bag, would never return. As a bonus, I’d never have another colonoscopy either. It all sounds like a bit of a no-brainer – why wouldn’t I have it done? Why didn’t I have it done in the first place? Well, the reason I didn’t have it done at the same time as the ileostomy was so that if I found the whole stoma/bag situation untenable, I’d be able to have a reversal – you know, go back to using the loo 20 times a day, untold agony, and the possibility of crapping myself in public with no warning. Some people do hate it; they can’t bear it; they beg for a reversal and although I was pretty sure I wasn’t going to be one of those people, my surgeon had only just met me and didn’t want to take any chances. The reason I was being told to spend time considering now is that it’s a big surgery. A huge surgery; far bigger than the ileostomy itself. The rectum lies deep in the pelvis and is not easy to remove, it can cause complications in other areas including the genitals, and in Crohn’s patients the anal wound can be very slow to heal, and rarely but sometimes doesn’t heal at all. My surgeon wasn’t prepared to advise me which way to go; this was up to me. And whilst I was pretty sure I was going to have it done, we agreed that I would take the summer to decide. On my way out, the IBD nurse reminded me that a good thing to do with such a complicated decision was write a list of questions that I could ask – either when I next saw the surgeon, or through her by email in the meantime. I’d done that before the first operation; I’d asked everyone I could every question I could think of, and it had helped. Maybe I should do it again.
Usually, I don’t go out at night if I’ve been out during the day. With Crohn’s I just don’t have the energy to do both. But that particular night we had tickets to see a play that a dear friend of mine had written, and I really wanted to go. Actually I was determined to go – I’d missed at least two of her new plays while I’d been ill and to miss this one, when I was healthier than I’d been in decades, would pretty much make me one of the world’s least desirable friends. It wasn’t like we were going to have to
negotiate the West End of London either; this play was on at a theatre in Watford, and we were all going so I wouldn’t even have to drive there. And once we arrived, I’d be mostly sitting down. For my first trip to the theatre as a baglady, it was a gentle ease-in. Or so I thought. We got to the theatre and realised we had to park in a nearby multi-storey car park. Horrible. It was in a part of Watford that, in contrast to the lovely street the theatre was on, seemed industrial, grey and bleak. It was dark, but I couldn’t imagine that a bit of sunlight would make it feel much safer or more exciting. We parked on a high storey and had to walk down stone steps, in a corner of which lurked a couple of white youths. To me they looked scary. ‘We’re gonna get hurt,’ I thought, trying not to let the teen see I was scared. ‘I’ll give them everything’, I decided, ‘my handbag, my phone …’ But then, I realised, I wouldn’t have my emergency ileostomy kit; if my bag needed changing, I’d be helpless. And in the middle of Watford. As we approached them I took my teen’s arm in one of my own, and my husband’s in the other and looked straight ahead. As we got closer the familiar smell of weed wafted gently into my nostrils and I exchanged a look with my husband. I wasn’t scared any more. Young men stoned on dope aren’t violent; they weren’t going to stab us or burst my bag with an unfortunately aimed punch. I actually smiled at them as we made our way past; as they politely stood aside. These guys weren’t threatening – they were sweethearts. And I was a loon. In my defence, I hadn’t been out much over a four year period – my understanding of social interaction and general outside behaviour was a bit rusty.
The play was great. There was a point halfway through the first half when I realised I was in the middle of a row in the stalls and panicked about how embarrassing it would be if I needed to get out. I touched my bag through my top and it felt full; I wanted to check it; I needed the loo. But I was just going to have to wait, and fortunately the play kept me gripped enough that my mind wasn’t screaming about the bag – just urgently nagging in a stifled whisper. And it was only about fifteen minutes until I was able to push my way out, run to the ladies’ toilets and check to see that, of course, everything was fine.
When the curtain came down, we left to join the playwright in the bar. She had a friend with her who was a designer and we all sat down to talk and drink. Well, everyone else drank; I tend not to, it just makes things a bit too runny and difficult. We spoke of the play, we dissected each actor’s performance, delighted in the sets and the play itself and wondered at the fact that the ageing audience had appeared to enjoy it as much as we had. Our friend is clearly a better playwright than she knew. Eventually I found myself alone with the designer and we somehow ended up talking about my bag. His sister had one too, it turned out, though hers was a colostomy so not exactly the same. I told him of the conversation I’d had with my surgeon that day and he wanted all the details of the operation I was considering. When I got to the bit about sewing up my actual anus he was horrified. I laughed and put it down to the fact that he was quite clearly gay. To me the anus was a source of nothing but pain and embarrassment; for years it had been the porthole for nasty, corrosive, evil-smelling poo, and ninety percent of the time it had been a sore, bloodied and horrible entity. For him the anus served a quite different purpose and just as I couldn’t imagine doing what he did with his, so he couldn’t conceive of anyone not wanting to enjoy such pleasure themselves. He leaned close and said, quietly and caringly, ‘Can’t you ask them to leave a bit open – you know, for your husband?’ I didn’t know what to say; I couldn’t think of many things that would be less fun than than backdoor sex when you had an anus like mine, but he didn’t need to hear that, so I gave him the only acceptable response and giggled conspiratorially.
of me that would’ve liked to see the look on my surgeon’s face if I had …