My life is governed by piss and shit. Everyone’s life ( in the ‘ civilised’ world ) is governed by the excretion and disposal of those two.

When you are normal, you rarely notice it. You can go to a loo, do what you have to, flush and leave. Job done. Job done 5/6/7/8 times a day, possibly more, but not often is it complicated.
When something goes wrong though, suddenly it’s not background anymore, it becomes very much your focus. Maybe you’re on a train and you need a wee. The toilet is out of action and the train isn’t stopping for an hour. Suddenly all you can think about is how you are going to manage that situation, and it isn’t pleasant. Maybe you’re in a theatre and in the middle of a row and suddenly you feel like you are going to shit yourself. You either hold on or you try to make your way past 10 people in the middle of a performance, causing a lot of disturbance, disruption and embarrassment for yourself.
By and large though you have complete control, other than in early childhood, of how you deal with it. You may have the odd close call, but it rarely leads to calamity.

With spinal cord injury that all changes. All of a sudden you have lost all control of both bladder and bowel. To compound that hugely, you can’t walk or even stand up. So you’re doubly incontinent and unable to run to a toilet. What’s more, you can’t actually tell when you need to go.
It’s why most people that are spinal cord injured and in wheelchairs don’t go out much. The ever present risk of ‘ accident’ and the subsequent inability to deal with the consequences ( while out ) is just too much to deal with. You might have to not eat or drink anything whilst out to minimise the risk of setting your system in motion, so to speak.

For me now it’s made more easy to cope by having a stoma and a suprapubic catheter. I have valves, you could say, that I can seal. But solid and liquid still want to come out. Trying to artificially prevent it from leaving my body just makes me spasm, my legs trembling and jerking. I have a tube sticking out of me and a bag stuck to me. Even those 2 aren’t a guaranteed seal though. Both can rupture or just leak. I spend a lot of time and effort just trying to make sure I have sufficient supplies of catheters/ bags/ sprays/ sleeves/ tubes. If I’m not onto it, it’s very much a problem, and the supply chain lets me down regularly. It’s not enough to send emails and make phone calls, because still human error ensures that I have regular stressful times where I am dangerously close to running out of what I need.
In the pandemic, people panicked at the prospect of not having toilet paper. There was a genuine fear of not having enough. In the event that you ran out there are a thousand ways of managing without it. There’s newspaper, tissues, bidets, leaves, cloths you can wash etc etc etc. Not many people were really in danger of having drastic toilet disasters, yet still there was widespread panic and headlines in the news.

All spinally cord injured people live in that world of panic all of the time, but for us lot it’s real, with the very real accident waiting to happen scenario there constantly. It’s a thousand times worse than being down to your last multi pack of Andrex.

Currently I’m on a train to Oxford. The leg back that my Pee drains into, is leaking. A week ago I made a pleading phone call to the supplier, for more. Two weeks ago I was online to my doctors surgery website ordering a supply. This morning this last bag sprang a leak. I’ve used duck tape to try to stop it, but it hasn’t worked. I’m slow dripping therefore. I don’t think I smell, and it’ll probably be dripping onto the ground/ floor rather than on me, but as I can’t feel whether my feet are wet, nor even reach down to them to feel with my hand, I just don’t know. I phoned again today. They said they didn’t understand why they hadn’t been sent…. two hours later I got a call ( when I was on the station platform ) to say that a taxi was rushing to my address with a supply. I said I had gone out. I could hear the surprise in his voice – ‘ you’ve gone out with a leaking bag?’ Normal people wouldn’t go out if they were liable to leak wee or poo, would they, and this guy on the phone was able bodied… but my life is like this all the time, I wanted to explain. I didn’t, I just said to tell the driver to make SURE he left the supply somewhere I can find them.

These days doorstep parcel theft is rife, with people selling the proceeds down the pub.
So if you see a fella in your local boozer trying to shift a pack of 750ml short tube leg bags, you know where they came from.

2 thoughts on “

  1. Having spent time out and about with you, Russ, I have seen in real life how bloody awkward your toilet arrangements make your life when everything is ‘running smoothly’. So I can only sympathise, hearing about these added problems.

Leave a Reply

Your email address will not be published. Required fields are marked *