Thursday, 17 May 2012
Sometime after I’d had the first surgery, a friend who’d had a temporary bag in the past suggested I look into joining the Ileostomy Association, which is – well, you don’t need me to explain; it does what it says on the bag. It’s an association for people with ileostomies. For many years I’ve been a member of a similar Crohn’s (and ulcerative colitis) association but all I’d ever done was read the newsletters; my Crohn’s has always been pretty severe, but I live with it, and I really never much fancied the idea of hanging out with loads of other people with inflammatory bowel diseases, talking about being ill. Particularly when I was likely to be sicker than most of them. So I kept up with the new drugs and read the odd story I could relate to, but other than that, I stayed away. This was different though; when it came to ileostomies, I was a newbie. I could learn from those more experienced than I, so I found the website and joined online, which is when I noticed a button marked ‘forum’. I clicked it, and my life changed. I know that sounds dramatic, but suddenly I was speaking to people in the same position as me, people way more experienced than me, and everything in between. When it comes to it, the doctors and surgeons and nurses can tell you a lot, but nobody knows the experience of having an ileostomy like people who’ve got one. And while I was very lucky to have a couple of friends with permanent bags, and a couple more who’d had them temporarily, those people aren’t always available, and this forum gave me everything I needed at the click of a button. My first post was about leakages and the advice I got on there was the advice that finally solved my initial leakage problem. After that, there were a few people I’d ‘chat’ to on there regularly; I felt like I had a safe place to go when I needed ileostomate advice. A virtual community I could hang out in when I needed help. And after a while, I found myself helping other people too, which I have to tell you is far more satisfying. When the proctectomy first reared its head, I posted on there about it and got lots of advice and opinions, all of which helped in some way. Including a piece of terminology I shall treasure forever.
To reiterate, and if you don’t remember or don’t know, I shall tell you exactly what the proctectomy entails. It’s the removal of the rectum and the sewing up of the anus. That means your bum is sewn up. There is no longer any exit site between your buttocks. Hence no possibility of reversing the ileostomy and going back to a ‘normal’ pooing routine. As I’ve said before, it’s the finalisation of the post of baglady. Or bagperson. It means it’s all forever. It means you have what the people on the Ileostomy Association forum call – and here it comes; the fantastic terminology - a Barbie butt. For obvious reasons. It’s great though, isn’t it? I guess for men it’s a Ken butt, though clearly that doesn’t sound as good, which makes this one of those cases where it’s far better to be a chick. Because you get to have a Barbie butt. I was going to have a Barbie butt. And I found this out on the forum. My safe place. The place I was bound to go to with whatever questions I might come up with about the operation that would end with my having a Barbie butt.
My question was about waxing. As a woman of a certain age, I have hair where I’d hoped I never would, and a surgeon was about to sew up my anus. Wouldn’t it help if maybe I had my bum waxed, I wondered? It’s not as if I was gorilla-like, you understand (and apologies for over-sharing here), but there are hairs and I was concerned that they might get in the way. In my post, I said all that, and asked if anyone had thought the same, or even had it done? Usually on that site, you get a reply pinged back within an hour or two of posting. I didn’t. I didn’t get a reply for the next two days, and I was mortified. There were people on there – complete strangers, I know, but still – with whom I’d discussed the most intimate of things. I’d seen younger women, not yet in serious relationships, discussing the best sexual positions to get into when you have a bag, and how to bring it up with prospective partners. I’d seen people discussing anal-vaginal fistulas that wept copiously at the most embarrassing moments, not to mention all the obvious stuff I’ve spoken of myself in this blog many times – the poo, the macerated skin, the various bizarre behaviours of the stoma itself; the stoma being a bit of intestine which is on the outside. Intimate, surely. Yet now, it seemed, I’d found the question that must not be asked. The discussion that could not be had. In an age where young women regularly wax their entire bodies (and we won’t go into that now, but yes of course I have an opinion on it, and you can probably guess what it is), nobody was prepared to discuss the possibility of a woman in her forties getting a bit of rogue buttock hair ripped out by the roots. I toyed with taking the post down. I emailed the one member of the Association that I have an ‘off-site’ relationship with, and whilst she found it funny, and was of course sympathetic, she asked me not to take it down, on the grounds that the whole point of the site was that we should be able to discuss anything. She was right, I know, but honestly, every time I thought about it my cheeks (not those ones) heated up as though everyone in the world had read my post, come round to my house and was standing outside my door, waiting for me to go out just so they could point and laugh and judge me. Finally, on day 4, a woman of a similar age, who was also about to have a proctectomy, replied to me. She said she hadn’t thought of it, but now that she had, she thought she’d probably have it done, too. That it was probably going to make things easier when it came to stitching. Then a second person wrote and mentioned the possibility of ingrowing hairs, and wouldn’t that make things worse considering what was already going to be going on down there? I replied that I thought it might be worth it, all in all, and there the thread ended. Nobody ever added another post to it. And I did what I should’ve done in the first place; I asked the lovely lady who waxes my legs and she said she often did women’s buttocks – turns out much younger women get hair there, too – and that she thought it was a very good idea, and why didn’t I check with my nurse? I decided I’d checked with all the people I could handle checking with and asked her about the ingrowing hair situation; she said she had the perfect cream to make sure that didn’t happen and promised that if, after that, I did get any ingrowing hairs, she would come round to my house and sort them out herself, so I asked how close to the surgery I should have it done and she reckoned 5 days would give the skin enough time to recover without the hair growing back. So, that’s what I did. As well as fitting in all the lovely things I indulged in those final two weeks before surgery on the 26th October last year, I also had my bum waxed. And if you’re thinking of having it done for any reason, let me tell you it hurts a lot less than the bikini one.
In my compulsion to be completely prepared for this next surgery, I became fixated on a broken spring on our mattress; how could I rest on a bed with a broken spring, when my arse had just been sewn up for goodness’ sake? Never mind that the spring was nowhere near my bum, or indeed even on my side of the bed, it had to be rectified. So we bought a new mattress which we couldn’t afford, and I had my buttocks waxed – as well as my legs while I was there; would’ve been churlish not to – and all of a sudden it was the day before. It was October 25th. And when the phone rang and it was the hospital I felt sick. Surely not another postponement? Didn’t they know I was spending the day chilling out at home, finishing off the book I was reading, choosing my last meal for a while (sushi, thank you for asking)? Was I going to have to go through all this day before stuff again in another fortnight? ‘How far away do you live, Wendy?’ was the question they asked once they’d told me they were calling from the hospital. I told them about an hour away by car, and they said I’d have to come in that afternoon so they could take some more of my blood. Apparently the blood that had been taken at my pre-op assessment three weeks earlier had just been found to be ‘not enough’ to cross match for my surgery the following day. It seems that years of blood transfusions meant my blood was – and still is, I imagine – a bit of a complicated mess, and that it would take several hours to process so that they would have the right blood present at my operation in case it was needed. If I could get there in the next two hours, they should have enough time to get it done by morning, when my surgery was scheduled. I started to protest; to question why on earth this hadn’t been realised sooner? That I didn’t exactly have the time to lose a couple of hours of my day, because I was due to have an operation in the morning, but then I realised there was no point. I either schlepped across town to let them draw blood, then schlepped back, no doubt during the rush hour, and then got on with what was left of my evening when I returned, or I didn’t have a proctectomy the following morning. Obviously, we were going to do the journey; my husband had the car keys in his hand before I was off the phone. We had to go, I had to have the surgery – I was fully waxed and ready for the off. In less than 24 hours I was going to have a Barbie butt, and a couple of hours excised from my day wasn’t going to stop that happening.