The truth is, the longer I live with an ostomy, the less I notice it, think about it, remember how very different it is to be pooing from a bit of intestine that hangs from my belly. The hole most people’s butts have. I apologise for over using the word ‘butt’, not for the frequency, but for the Americanism. As a Brit I should be ashamed, but I’m long past shame and discomfiture (there’s a British word for you). At least, I thought I was.
I’ve taken a while to write this down, for reasons that will become obvious. I used to post hugely intimate blogs once a week, but having got out of that habit, I find myself suffering from the aforementioned discomfiture at the mere thought. But here goes:
Just before Christmas, I was taken to the theatre by a very lovely person. I know this person from Twitter and though I absolutely consider her to be a friend, we haven’t actually met more than a handful of times due to our living many miles apart. On this day, she had to be in London, she offered to take me to the theatre, and in the spirit of fairness, I forced her to let me take her for lunch first. The lunch gave us a chance to catch up and when she pointed out that I rarely wrote my blog these days, I said that I didn’t really have anything new to say about living with a bag. That I felt I’d said it all, and that it was there to hopefully be accessed by anyone who needed it. That I was lucky that I’d never had a leak anywhere that was difficult, and that I’d just had a scary five minutes on the tube when it got stuck in a tunnel and I’d feared my worst nightmare was about to come true. We laughed. We finished lunch. We went next door to the theatre.
Usually, my food goes through me and out into my bag very fast.
I had plenty of time to empty it before the play began, and that was my plan. My body’s plan, as it turned out, was quite different, and my bag remained stubbornly empty right up to and beyond the curtain rising. All the way through the first half, I was vaguely conscious of my bag, noticing when it finally started filling, not worrying too much as I was watching and enjoying the play. And being out with a friend. And appearing normal.
At the interval, my friend went to the bar as I moved unusually fast in order to be the first to the ladies’. In a tiny cubicle, I checked my bag and saw that it was creeping towards leaking. A small amount of output – which is the euphemistic term we ostomates use for poo. Ostomates is the euphemistic term we use for people who poo into bags – was forming a line at the edge of the flange which surrounds the bag itself. In time, this would be followed by more output. More poo. Which would eventually build up into an uncontainable amount and lo, I would be at leak point. Fortunately, I had a fix-up; a strip of latexy stuff that I could put around it and thus increase the area of the flange, which would hopefully hold until the play ended and I left the theatre and got onto and off of the tube.
But wait, I thought to myself. I’ve never changed a bag in a public place.
I should do that now. I’ve had my bag for more than four years, I’m a veritable veteran; this should be a piece of cake. But not here, not in this tiny cubicle with no sink and barely room for my legs, while an ocean of ladies wanting to pee huff and tut outside the door. So I left that loo, washed my hands, and found someone who worked at the theatre to tell me where the disabled loo was.
‘We don’t have a disabled toilet.’ He smiled. And that should have been it. I should have left it there and maybe done some digging later about the legality of a huge theatre with no disabled toilet. But I had made a decision. And I am an idiot.
‘I need space,’ I said. ‘a good sized cubicle with a sink in it.’
‘We have an access toilet,’ he said. ‘Two floors down (we were in the circle), but it doesn’t have a sink.’
The interval was coming to an end, but I was on a mission now. I legged it down to the ‘access toilet’, which was indeed large, and ripped off my bag before realising that my kit – my emergency kit of spare bags and minimal accessories – had been packed four years earlier and not so much as looked at since. I didn’t have any of the accessories I now use – no powder, no moldable ring to ensure a proper seal around the base of my stoma, not even the kind of bags I now use – but I was standing there, bagless, my stoma unfettered, and I had no choice. Ancient bag duly stuck on, I headed back into the theatre, feeling not entirely secure. My friend was already seated, complete with drinks for both of us, and I tried not to feel too embarrassed about disturbing the rest of the row two minutes into the second half. A quick whispered assurance that I was ok probably didn’t bother anyone, and we settled down to find out whether Prince William was going to try to usurp his father.
I spent the second half a little less engrossed than the first, which is by no means a review of what we were watching, but rather a sign of my complete neurosis. Like an old perv in a XXX cinema, I sat with my hands up my own dress, groping around both sides of the bag, hoping like hell I would feel nothing. And for a while I didn’t. I was fine. I’d got away with it. Only I hadn’t, of course.
Five minutes before the end of the play, I felt a gushing from either side of the bag.
As I stood up, my friend asked if she could do anything – she’s a doctor; if anything had needed doing, there would be no better person to do it, but this was down to me. I annoyed everybody in our row one more time, apologising, holding my dress away from my body to avoid it getting wet and all but running as I pushed past the female theatre usher sat cross legged on the floor by the door.
I raced back down to the larger loo, noticing, this time, that I was passing a huge landing lavished with two sumptuous sofas – hello, big West End Theatre, you have no disabled toilet; maybe one less sofa? Having the presence of mind, on this second occasion, to grab a handful of paper towels as I headed for the cubicle, the first thing I did once in there was rip off most of my clothes in an attempt to keep them from getting icky (a euphemism for ‘covered in poo’). It was horrible. Mortifying. I stood there, shaking, hanging over the loo while my stoma spewed for what felt like days, but was really less than a minute. I’d brought a small, stylish handbag with me that day, rather than the big sack-like thing I usually carry. A sack-like thing that has clean clothes, dry wipes and a spray can of water in it. I took off everything that had got pooey, wrapped it in a plastic bag and threw it away. I put another bag on, and ran out to the sink to clean up, wearing just my tights and a bra, hoping like hell nobody would come in and find me there. Back in the cubicle, I toyed with ringing Husband, but knew that speaking to anyone at that point would just make me cry, so I put all the stain free clothes back on and took a deep breath. I shook for a while longer, then gathered up my things and found I’d missed the end of the play. People were leaving. And then, like an unexpected cheque the day before your tax is due, there stood my friend, holding my coat and scarf, smiling. We were on the landing with the huge sofas, and we sat on one of them. (They don’t need two; they really don’t.)
When I’d sat at lunch saying how I’d never had a leak in an inappropriate place, I might as well have stuck a fork in my bag there and then.
My friend had a different view on it. I couldn’t have been with a better person during that experience – perhaps because she’s a doctor, but probably just because she’s her – her combination of compassion and lack of hysteria was exactly what was required. She pointed out that my worst nightmare had just happened and here I was, looking fine, complete with fresh bag, and it was ok. I was ok. Nobody was pointing and laughing. Nobody but the two of us knew what had happened.
She was right, of course, I knew that even at the time. It’s taken me a while to actually get there is all.
Incidentally, I have googled like an obsessive, but I can’t find any answer to the legality of having – or not having – a disabled toilet in a major West End theatre.
This post originally appeared March 24, 2015 on mybagladylife.blogspot.com.