I didn't want a bag. I never wanted a bag. When I was diagnosed with Crohn's at 19 years old, a bag wasn't even mentioned. Four surgeries later, it was brought up as a possible option, which I completely disregarded.
A cheerleader for not having a bag
Right through my twenties, as I had one operation after another, I pretended to myself I would never have 'that' surgery. I met at least three people with bags during that time. All women, all on the same ward, all praising their new lives with bags.
I listened to them, I shared their joy in their new ways of being, and I thought, 'yeah, but you're still here in hospital having more operations aren't you, so what was the point of that?'
I became a cheerleader for not having a bag. Look at me – I've got hardly any colon left, but I still poo from the same place 'normal' people do. Ha!
How one meal changed everything
Then, when I was 26, and living with the man I now call husband (because I married him), I ate something I shouldn't have – well, I ate Chinese at a place that swore it didn't have any MSG in its food – and spent many hours throwing up, no hours pooing, and finally woke my then boyfriend and told him he'd better take me to the hospital.
My stomach was hard and distended, and I knew this meant more surgery. I also knew it meant something else – something I'd been sticking my fingers in my ears and singing 'la la la' about for way too long.
At the hospital, my surgeon was called from his bed some miles away to attend to me, and on his arrival, he held my hand, looked me in the eye and said, 'you know what this means, don't you?' I did.
“Will your partner be able to cope?”
A stoma care nurse came into my cubicle, told me I could still shower, still swim, and still have sex, asking if there was anything else I needed to know. I shook my head, mutely – that seemed enough for now.
Then she asked if I had a partner. I nodded. 'Will he be able to cope, or will he leave you?' she wanted to know. I squeaked that we'd discussed it and I was pretty sure he'd stick around – though he had been a while parking the car, now I came to think about it.
He showed up a couple of minutes later and she thrust a handful of books at him, saying that I was about to have a bag and wouldn't have time to read the literature, but he'd be able to while I was in surgery. And then she was gone. My first experience of a stoma care nurse.
Where’s my bag?
When I woke from that surgery, I put my hand to where the 'x' had been marked on my belly. Even after anaesthesia, I remembered exactly where that had been. There was nothing there. No bag. I asked the recovery nurse where my bag was, and she put my hand on to the other side of my abdomen.
I was confused for a moment – why wouldn't they have put it where I'd wanted it to go? Then I realised the bag I was touching was a familiar one; it was a wound drain. I still didn't have a bag.
Out of options
After that, I was the standard bearer – I had ten centimetres of bowel left, and no bag. Yay me!
For another twenty years that was the case. For the last four of those, I was mostly in bed, crippled with Crohn's and all its associated complications, crawling to the toilet up to 29 times a day, my anus screaming and raw, and my boasting of not having a bag started to feel a bit empty.
A tad pointless. So I told my GI Consultant I was ready. He'd stopped suggesting a bag long ago, I'd always thought I'd die rather than have one, but finally I knew I was out of options. I was in my forties, married with a teenage son, and I really wanted to be out of pain and out of bed.
One hell of an improvement
In September 2010, I woke to find an ileostomy pouch exactly where my 'x' had been marked. I couldn't have been happier.
Nearly four years later, I have never had a moment of wishing I didn't have a bag. Sometimes I feel sorry for people who still have to poo the old-fashioned way; it seems so primitive, somehow. Why do that when you could have the superior waste system we lucky few get to enjoy?
I suppose if you only go once a day, it's not an issue, but in my world, it's one hell of an improvement.