The Truth About Me & IBD: Part Two

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

Part Two of a Four-Part Special. Don’t say I don’t spoil you. Here we go then:

Toilets, and why aren’t there enough of them?
Toilets! Everybody needs a toilet, just everybody needs good neighbours, but if you’ve got IBD, you need a toilet as much as you need oxygen. We don’t do too badly in the UK for public toilets, but then I say that imagining that I didn’t need the toilet when I went out, like before I was ill. You’d go before you left home, go shopping and go again when you got back. I vaguely remember that life. It was around the time that mobile phones were just being introduced to the world and N-Sync were top of the charts.

Justin Timberlake. I'll just leave that there
Justin Timberlake.
I’ll just leave that there

Unless you’re in a major shopping centre I can’t think of a single place where there are public toilets, save for a few in central London which always smell like someone’s thrown up in them. Oh wait, they usually have. And don’t get me started on train toilets – they are a hell unto their own. The army could bottle that stink and use it like tear gas against jihadists and such. I reckon the only nice train toilet would be Thomas the Tank Engine’s.

Do you think there's a toilet on board?
Do you think there’s a toilet on board?

Brighton seafront, for example, has one public toilet. Yes, one. It serves about 5,000 people a day in July and August and yet, there is one small building with about five toilets in it. Try waiting in that line when you don’t possess a colon. ‘I don’t have a colon,’ I say, ‘please can I push in so that I don’t have an accident right in front of everyone.’ It sometimes works. If I just get scowled at I yank my top up to show off my scars and at that point, I usually get a clear run.

The point is, Brighton in particular needs more public toilets. Every town needs more public toilets. If councils understood that a lack of toilets in their town centres actually meant that some patients with IBD end up housebound, isolated and understandably suffering from depression, do you think they might spend some money on a loo? What if we told them that we’re all millionaires, but we can’t spend any money in their town because there are no toilets? It would be a smart move, no? Perhaps we need to do more to make this happen (not the being a millionaire bit, that’s really hard, but the getting a toilet built bit).

Sometimes you find a toilet and wonder why they even bothered
There have been many unfortunate occasions when I’ve seen a sign saying ‘WC’ and thought, ‘Hoorah, sweet relief, I found me a toilet!’ and four seconds later I’m coming out again shouting, ‘a hole in the ground is not a *&£$%£$ toilet, people!’

This is a much nicer image than a stinking so-called toilet
This is a much nicer image than a stinking so-called toilet

Admittedly this has only ever happened in France, Spain, Italy, Thailand, Greece… wait, that’s actually pretty much everywhere but the UK. Excuse me, but who in God’s name decided that it was OK to expect a woman to crouch down on a wet floor to evacuate her bladder and/or bowels?

It’s alright for a man, they’ll just be peeing anyway (we all know that men save their poohs for the privacy of their own home) and they already wee standing up. There’s just way more chance of the floor being sprayed than usual, but that’s nothing we’re not used to. But wait, a woman? Er, someone tell these builders that our bodies weren’t really designed in such a way that we can pee standing up. Do they not know this? And a woman with IBD? Well, good luck with that.

It’s the 21st century, surely we can manage an actual REAL LIFE TOILET? People are going on holiday to the ruddy moon, for crying out loud. I mean, the technology’s there, come ON!

I’m getting angry just writing about this stuff. I’m going to sucker-punch some cushions.

Coming up in part three: Quarter Pounders and the perils of the dungaree!


The Truth About Me & IBD: Part One

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

Anyone with IBD – whether they have Crohn’s disease or ulcerative colitis, whether they have a stoma, a J-pouch or all their insides intact, it doesn’t matter, we’ve all been in a situation where we’ve wanted the ground to swallow us up at some point, right? I mean, IBD is super embarrassing. It’s undignified. It’s painful, it’s disconcerting, it’s destructive, it’s stinky, it’s even more embarrassing than it was five seconds ago when I first typed ’embarrassing’. It’s a truly horrible disease. While our friends and family might be supportive of those of us inflicted with rotten insides, they will never truly get it.

One of the reasons that people don’t understand what we go through is that we probably don’t actually tell them. I mean, not in detail. That’s because the details are pretty grim and most of us (myself excepted) are too polite to talk about what’s going on within our intestines, never mind what comes out of them. So here it is: part one of a ‘this is the truth about you, me & IBD’. Feel free to share the link with your nearest and dearest. You might find they no longer find it weird that you cancel social activities at the last minute, or ask more questions than an SS interrogator when deciding whether or not to go to the zoo or out for lunch. Who knows, you might even get a biscuit out of it.

Brace yourself, for your bottom is about to become public property
No word of a lie. When we see our gastro consultant, not only do we have to be frank about how many times a day we go to the toilet and whether or not our stools are actually stools (or more like stagnant pond water, which is how I’ve described my ‘output’ in the past) we also have to put up with rectal examinations on a regular basis. I must have heard the line ‘OK Juliette, please draw your knees up to your chest and try to relax’ more times than I care to remember. Try to relax? You’re about to insert a plastic tube up my backside and INTO MY INTESTINES, you’re not handing me a cappuccino and a Vogue menthol. I am literally as far removed from relaxed as is possible right now. UGH.

Bring me this if you want me to relax, maybe
Bring me this if you want me to relax, maybe

I always say, ‘This is horrible for me. I mean, REALLY horrible. But you went to medical school for, like, 45 years and your reward is to spend your days sticking your fingers up diseased bottoms all day long. Er, you lose!’

You will ALWAYS need the toilet at the most inconvenient time
A few months after stoma surgery I went on ‘holiday’ to southern Ireland. I say ‘holiday’ in inverted commas because it was cold, wet and the food was so dreadful I thought I’d gone back to the seventies. Still, my boyfriend and I were staying in a nice little bed and breakfast place, so it wasn’t all bad. Or was it?

There I was, gaily helping myself to muesli, toast and orange juice at 9.00am before we set off on a nice drive through the countryside. An hour later and we’re halfway up a mountain when I suddenly feel a warm, heavy sensation in my groin, as though a cat has just climbed onto my lap.  I look down and see that my ileostomy bag is about to explode. ‘My bag’s about to explode!’ I said, in a panic, ‘Stop the ruddy car!’

We pulled over and I crouched down and emptied my bag behind a rock while my boyfriend busied himself looking at trees and stuff. I heard a ‘baa’ sound and looked up to see a flock of sheep giving me the stink eye.

'Excuse me, you can't do that here!'
‘Excuse me, you can’t do that here!’

When you need to go, you need to go, and I’m still surprised that the bag didn’t just fall off, so weighted was it with semi-digested oats and soya milk and toast and flipping raisins. Ugh.

This stuff weighs a TONNE when it’s wet – who knew?

A few weeks later I was in the toilet at a rock ‘n’ roll club when the power went off.  I was midway through emptying my ileostomy bag and no, I did not have a torch in my pocket and no again, I could not use the torch facility on my iPhone because it was 2002 and no such thing existed. To add to the fun, I had just noticed that there was no toilet paper. I sat in the pitch dark for 25 minutes with my bag dangling between my thighs, my dinner gloop slowly dripping into the toilet bowl until someone got the back-up generator working, I yelled for assistance and someone else brought me some toilet paper.

I should wear toilet roll as a hat, then I'd never be without it
I should wear toilet roll as a hat, then I’d never be without it

I now take tissues wherever I go, even in my own house. Better safe than sorry, right? Oh, and my boyfriend was annoyed because he couldn’t find me (one can’t help but think that he didn’t look very hard). Good times!

That’s enough for now. Coming up in part two: a hole in the ground is NOT a toilet, OK?