Wednesday, 6 November 2013
I wrote this blog back in July, but didn’t post it. Somehow it felt too raw, too personal; I’d been enjoying writing light, humorous posts about language and the career I used to have writing satire. And this wasn’t that. This wasn’t me being quite healthy, and by the way I have a bag. It was more like the pieces I used to post – when the hard stuff was going on. Now, with a bit of distance, it feels ok. So anyway – here it is:
I have a hole in my stomach. I’ve had a hole in my stomach before. I had that first one for two and a half years, and finally decided to let the surgeons sort it out when it got to be the size of a kiwi fruit and a piece of chicken fell out of it. Of course, things weren’t quite that simple – when I got to the hospital, I found that where I thought I was maybe a bit thin, they were of the opinion that, at less than five and a half stone, my body wasn’t strong enough to withstand surgery. So I stayed in hospital for a couple of months while I was fed through a main artery in an effort to fatten me up in readiness for my operation. It was a kind of medical Hansel and Gretel situation, only without the cage. Or the nasty witch. And with cigarettes. This was the 1980s, we were allowed cigarettes in hospitals then, and thank goodness. I gave up smoking long ago, but one should never underestimate the ice-breaking properties of sharing a disgusting habit.
When this current hole started, I was pretty sure I knew what it was, but I decided to employ a strategy of pretending it wasn’t happening, coupled with occasional periods of deciding it was something minor. Just an abscess, or a boil type of thing. People with Crohn’s get those. I get those. But after 3 months of it not healing, my GP convinced me to tell my Consultant, who booked an MRI, which went on for an hour and a half, and during which I fell asleep. An MRI is that loud, bangy, claustrophobic tube thing. And yes, I did fall asleep in it – I’m hard, me. Last week I went to get the results and my Consultant told me to guess what it was. I guessed it was a fistula. It was. It is. A fistula, for the uninitiated, is an impressive act of the body. When a piece of intestine breaks down and starts to suppurate, the body knows that if it just allows the suppurating bit to weep where it is, lots of other bits will get affected and infected and in short order everything will go septic and the person will die. Bodies want to live, so what mine has done is form a track from the site of the suppuration to the surface of the skin, and that’s where the nasty stuff leaves the body. Through a hole in the stomach, onto a dressing that is best changed every day after a shower. And there we have the miracle that is the fistula. Only this particular miracle rarely goes away on its own. Historically, we know that on my body it most definitely doesn’t go away on its own. At this point, it’s very small, and not much of a bother, so my instinctive reaction is to do nothing. Of course, this was my instinctive reaction in 1985 and that didn’t turn out so well. This time, though, my Consultant is in agreement that no decisions need to be made just yet. We’re going to wait until late November before we make any decision. I say ‘we’, because he says ‘we’, but we both know it really means ‘I’. Me.
He tells me that he knows it’s not sexy. I point out that half an inch below it there’s a bag of poo swinging freely. That my stomach has so many scars, anybody who saw it would believe me if I told them I’d been the victim of a shark attack. On top of that, I’ve been married for 22 years. Sexy is not really an issue for me.
I’d gone to the hospital knowing I’d have to have surgery at some point. Actually, my biggest concern had been that Kate the Princess would have had her baby and left by the time of my appointment, because I go to the same hospital where she gave birth and I needed to park. But I’m digressing. Which is what I kept doing when I was with the Consultant, because the one thing I really didn’t want to do was Discuss The Options.
Ok, so The Options. I thought there was only one. I was prepared for that one. The operation. But, as it turns out, there is another choice – the biologic. Biologics are new-ish, and powerful, and nobody knows their long-term effects because, you know, the new-ish thing. I have taken the two biologics that are used most often. The first one worked for a bit then sent me into anaphylactic shock – fortunately, I was in the hospital at the time, so a crash cart was handy, as was a nurse who acted swiftly enough that the crash cart served only to make me think I was in an episode of ER without George Clooney. So I stopped that one. Then the second biologic came out, and I got a ‘compassionate dose’ before it was actually passed for use in Crohn’s. That worked quite well for 4 years, and then it stopped working, and then I got the bag, and then I thought I probably wouldn’t need any more operations, and I certainly hoped I’d seen the back of biologics for the foreseeable future. There’s a new biologic now, and I can take that. In case the fistula has been caused by active Crohn’s. Except that I had a flare-up a while ago and it’s gone now, but the fistula hasn’t. That doesn’t mean there isn’t any active Crohn’s, but it does mean it can’t be that bad, as it’s not affecting me in any noticeable way. The fistula might also be caused by an adhesion – a common post-operative issue with bowel surgery. The MRI couldn’t tell what’s causing it. We don’t actually know why there’s a hole in my stomach. I told the Consultant I’d prefer the operation please, thank you very much. I found the biologics very debilitating, I don’t think I’m having a flare-up, and if I do have one bad enough to need biologics one day, it would be better if I haven’t exhausted all those available. Also, I’d be on them for an unspecified amount of time. An operation will be big and all that, but I know how to do them, I recover from them, and it’s over. It’s a finite kind of an issue. And anyway, we don’t have to even think about making a decision until the end of November, we’ve already agreed that. With The Options discussed, I left and drove home.
At home, I was on my own. Husband was working in Manchester and Son was staying at a friend’s overnight. Son had come to the hospital with me, we’d gone for a milkshake afterwards, and I’d gone home while he’d gone to his friend’s place. He knew I was fine, I was smiling, everything was good. And I wasn’t really on my own because there’s the cat.
And anyway, I was fine. I had dinner, I watched telly, I went on Twitter and didn’t mention the hospital, and then I went to the bathroom and sunk onto the toilet seat, sobbing. Crying like a toddler does – big, abandoned wails and howls. I wasn’t fine at all. I don’t want another surgery, and I certainly don’t want to put any more powerful biologics into my body. I don’t want to be sick any more, and the sudden realisation of that that was making me bawl from the pit of my soul. And then it was over and I was fine again. Maybe 5 months of a hole in my stomach had needed to be purged. The next morning the sun was shining and I danced around the kitchen with the radio on, emptied the dishwasher, had a coffee and a banana, and then I got in the shower and did a full on Glenn Close Big Chill sliding down the wall sob-fest all over again. I think maybe I’m not fine. And what is it about the bathroom? I was alone in the house, I could have howled like a werewolf during a full moon in the living room and only the cat and the goldfish would have heard me. As it was, I left the bathroom door open both times I fell apart and the cat looked at me with something like disdain as I made ridiculous noises and my face grew puffy. He couldn’t help looking at me like that, I suppose - he is a cat. And I don’t think he meant it, because he spent a good part of the next two days dropping half dead frogs at my feet.
Oddly, the hole in my stomach is where my tummy button used to be. Before my scar kind of healed over it, so that it almost looks like it was never there. Now it looks like it is there, as if my body didn’t like that it went missing. It was born with a tummy button, which is, when you think about it, a physical reminder of how we survived through to birth in the first place, so it’s not unthinkable that my body would want it back. It doesn’t, of course – it just wants to let the pus out of my body without it killing me.
I’m fine with that. I’ll deal with the other stuff in November. And take a deep breath every time I go to the bathroom.