After last week’s tangential leap into the present for the never-before-seen blog synchronisation/swimming experiment, it’s back to business as usual, and a quick fade into the past to keep the original chronology of my story going. I’d just had a very long, drawn out escape from the hospital, you may recall, and was finally allowed home.
It was over. No more nurses, good or bad, ministering to me (or not); no more other people’s smells; no more inedible food or unbearable hags hurling abuse at me. No more drips, no more doctors, no more NHS care 24/7. Just home comforts, home cooking and chocolate straight from the fridge. I didn’t have access to a fridge in hospital, and I’m not a fan of room temperature chocolate. You’d think I’d be happy. Not just happy, elated; over the moon; free at last. With a husband and a teen who loved me looking after my every need – though I wasn’t going to ask either of them to check my butt wound.
The thing is, being in hospital and feeling more than well enough to go home, and actually being at home are two different things. When you first get home, you are indeed elated and over the moon and all that stuff. Hospital doesn’t just depersonalitize you; it institutionalises you as well; even if you’re only there for a short while. At least it does that to me. So that when I get home, when I walk into my bedroom and see my own bed for the first time, there’s a part of me that feels like breaking down and sobbing; like I wasn’t quite sure I’d ever see these things again. Like for a while it had seemed as if I’d never again snuggle down in my own duvet, watch my own telly with the cat on my lap, knock over my own drink on my own bedside table. And that can make a person feel emotional.
I was feeling emotional as I got in my lovely, firm, familiar bed and settled against the mountain of cushions husband had created for me to lean against. As he and teen made sure I had everything I needed – drink, chocolate, remote control – I felt truly happy to be home. And then that wore off and I felt other things. Pain was first. My butt wound was agony. It was bound to be, I suppose; you can’t have your anus sewn up and not feel a thing, but somehow it was hurting more now than it had for days. I swigged a couple of big gulps of liquid morphine and decided I really didn’t like it. I phoned my GP to tell her I was home and to ask if I could swap her my bottles of liquid morphine for a pethidine prescription; I like pethidine better. They didn’t use it in the hospital, but I was damn well going to use it at home. I was no longer under their control. I could do what I liked. And what I liked was pethidine over liquid morphine. She said yes, and promised to come over after surgery closed. I missed my adventure bed, I realised – the pumping up and deflating cushiony element of it really had helped my butt, it turned out. I’d heard about a thing called a pressure cushion, which was supposed to be comfortable in such situations, but I felt pretty sure I wasn’t going to be in pain for that long, and they’re not cheap. Husband offered to go out and buy me one, but I declined. I’d been told that in 27% of Crohn’s patients who had this particular surgery, the butt wound would take a long time to heal. ‘Crohn’s bum’ was what my surgeon had called this particular phenomenon (he likes to talk in a language his patients can understand). But I wasn’t going to be one of them, I’d decided. Things that happen to 27% of patients don’t happen to me; things that happen to 3 or 4% of patients do. I was safe from this particular bullet. I wasn’t going to be in pain long enough to need a cushion. I was still wearing a padded dressing; the pain was terrible, and the wound bled a fair bit and wept a lot. It wept like it didn’t want to be a Barbie butt, and the bleeding wasn’t exactly rivers of blood, but when I undressed and walked across the bathroom to get in the shower, it did look like something very small had been brutally murdered on the lino. I did know, though, that this would pass. Post-operative stuff always passes; I’d had plenty of experience in this area. Not the anal area; the post-operative area. The anal area issues were new to me. Really new.
Coming home with a bag had been an odd thing – weird, daunting, scary, but also kind of exciting. I was entering a brave new world, with no more pain and alternative defecation arrangements. There was lots to learn, plenty to get used to, and a new life to be lived. Coming home without an arsehole was just plain weird. Suddenly I was seeing references to the ubiquity of the arsehole everywhere:
‘Opinions are like arseholes; everybody’s got one.’ Well no, actually, not everybody. I haven’t.
‘Everyone with an arsehole knows …’ I haven’t got an arsehole; I know (whatever fact it was that came after this preface – I always did know, because it was always something obvious, hence the use of the arsehole reference).
‘I need that like I need another hole in my arse and I’ve got one of those already’
Okay, perhaps I don’t always follow the most original people on Twitter and some of my facebook friends may have moments when they’re less than usually imaginative in their verbiage, but really I saw all of these things in a short time in those places, and I was just learning that I don’t need any holes in my arse. Not one, and not another one. I suppose such crass observations had always been there, but like a woman who isn’t pregnant, and doesn’t want to be, doesn’t really see the newborns that are constantly pushed down north London high streets, I hadn’t noticed people comparing thoughts to arseholes and thinking they were making an important/relevant/witty point.
The bag had seemed like a secret not many people knew about when I first came home with it. Before I started writing about it on a weekly basis and trying to get as many people to read and learn about bags in general, and my experience in particular, that is. Until then, it felt like a secret. It still does when I go out and am amongst strangers; like I’ve got something huge going on that none of them know about. That’s on the days when I’m not wearing my ‘I’m a Baglady and my bag has poo in it’ t-shirt, obviously. No, of course I don’t have such a thing. You’d see my bag through a t-shirt, apart from anything else, and I hate that. But this thing; this Barbie butt, sewn-up anus, no arsehole thing … even I hadn’t known it was a possibility before I had my stoma. People can’t see Crohn’s, they can’t see a bag (as long as your clothes aren’t too tight); they might vaguely know such things exist, but they don’t know a person’s got them unless they are told. They’re what’s known as ‘invisible conditions’, but this one takes that description to a whole new level. Even standing naked, with my bag on show, my massively scarred stomach giving away my Crohn’s status to anyone who might care to think about it, my Barbie butt cannot be detected. My buttocks aren’t sewn together – now wouldn’t that be a thing? – so it all appears normal. It’s the first truly invisible condition I’ve come across. Certainly the most invisible one I’ve ever actually had. As well as one nobody except the ileostomy/colostomy gang really knows about. And you, of course. Because now I’ve told you. And you are free to keep it to yourself, though I’d rather you didn’t; I’d rather you told people that these things can happen, and that as weird as it sounds, it isn’t. Like having a bag, it’s a way of saving lives and helping – in some cases even curing – people with terrible, horrible diseases. You may not want to, I realise, because when it comes down to it, you’re still talking about poo, and many people – especially British and American people – are still weirded out and disgusted by poo. But I’d love that to change. And so would everybody else who suffers with any kind of bowel disease – from Crohn’s and colitis to cancer; we’d love to talk about it over canapés, discuss it at dinner, have it be as acceptable a subject as any other disease. We’re not stupid; we know you’d rather talk about politics or ice cream, but it would be so good if bags and butts ended up on that same list one day. Excuse me a moment, while I climb down off my soapbox – it’s difficult to do with a suppurating anal wound.
Within a week, my butt wound was no better. In fact, without the special fairground bed, it was possibly even a bit worse; it certainly felt that way. I googled pressure cushions and found the nearest stockist. I phoned them and tried to explain to the shop assistant that I’d had surgery on my bum that wasn’t haemmerhoids so no, the kind of cushion he was suggesting wasn’t actually the one I needed. I wanted a solid pressure cushion, not one with a hole in, and no, not a rubber ring either; did he have one or not, because there was one on the website that I was staring right at. I could even give him the product number. Which I duly did, and of course no, he didn’t have it in stock, but he did have one that sounded like it might work so I summoned husband and told him all about it and that it would cost forty quid.
‘I thought you didn’t need a cushion.’ He said. Before I could screech my answer at him, he’d grabbed his wallet and was out of the door. An hour and a half later, I was sitting oh so much more comfortably, on my new cushion. I was one of the 27%.