Happy #WorldToiletDay to all the loos that I’ve spent the best years of my life sat on #Crohns #wecantwait

Nothing has felt like it has saved my life more times than a toilet. I’ve cried, screamed and had panic attacks looking for a restroom in stadiums, nightclubs, court rooms and shopping centres. I’ve slept in them, passed out in them, read massive planning documents in them, begged to die in them and vomited in them – I’ve even considered installing a computer and TV in mine I spend so much time in it.

As I was growing up I spent so much time on the toilet in my parents’ house that the loo was referred to as ‘Rachel’s throne’. Due to my Crohn’s (now confirmed as Ulcerative Colitis) you could say I have spent more time with my toilet than the average Joe on the streets. My porcelain bowl has become a friend and an enemy, at times a welcome relief and at others the site of excruciating pain, which leaves me wanting to tear my insides out.

Even now that I no longer have my ulcerated and disease filled bowel, I still rely heavily on loos. I still rush to them, and panic when I can’t find them. My ostomy bag can fill up extremely quickly, and I guess after 14 years of living with the constant pain of IBD I will never stop clocking the nearest loo wherever I go!

Anyway, today (November 19) is World Toilet Day and I couldn’t let it pass without paying tribute to all the toilets which, at times, have felt like they have saved my life.

We’re all used to the more bizarre ‘Talk like a Pirate Day’, “National Pie Day’ etc, but a day to celebrate loos and bogs? It may sound funny but there is a really serious message behind the calendar date, founded in 2001 by the World Toilet Organisation – I didn’t know they existed either!

They even have a MR TOILET, a remarkable man who has been on a mission to make people stand up and notice the sanitation issue, and THE URGENT RUN, a charity dash to raise awareness, and a comedy competition for the funniest toilet joke, the trailer of which I have put at the top of this post.

On its website the organisation says the day was met with “amusement, ridicule, laughter” but despite all this it continues, in a bid to remind people how lucky they are to have access to clean sanitation, while 1 billion people around the world still openly defecate due to poor sanitation and 2.5 billion people still live without adequate sanitation.

While toilets have shaped my life and having one close by and filled with toilet roll have meant more to me than food and water for years, they are taken for granted by many people on a daily basis. I can’t imagine how my life would have been during my illness and now if I didn’t have a toilet – I guess, despite everything, I’ve really been very lucky. I would probably be dead.

Here’s something exciting for anyone who is heavily reliant on toilets like me! The Great British Toilet Map has been founded, it let’s you know where the nearest public toilets are and which businesses have signed up to the Council’s Community Toilet Scheme – it’s about time!!!!

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You see my chronic illness could strike at any time – sat in a murder trial, eating breakfast, queuing for my shopping, partying with friends, sleeping, on an aeroplane – leaving me crippled with pain and with just seconds to find a toilet. I would flush bright red, my heart would start beating ten to the dozen and I would feel like my whole body was going to burst open if I didn’t find a bathroom. Sometimes, naturally, I just wouldn’t make it, and at times I would try to ignore it – mostly when I needed to go for the 10th time in the same number of minutes.

I hesitate to think about how many hundreds of hours of my life I have spent counting tiles, making pictures out of carpets, and trying to make shapes out of wallpaper, in order to try to distract myself from the pain. I’ve sat on some of the most disgusting toilets in the world (the kind you wouldn’t go into unless you are absolutely desperate), tucked my feet up in public loos so I won’t be murdered by drug dealers, and listened to women gossiping about unwanted pregnancies, and awkwardly, about me!

On too many occasions I’ve had to shout out for toilet roll. I’m sure anyone with IBD will have had that horrific moment that you put your hand into the dispenser, and find, well nothing! It is a panic-stricken moment, filled with horror. I always carry spare for that reason, but more than once I’ve run between loos (after checking no one else is in) with my trousers around my knees in search for toilet roll – luckily I always found some.

I’ve used weird, bizarre and lavish toilets on my trips around Europe and the world, including Thailand, France, Italy, Australia, and Singapore. I’ve even used Moaning Myrtle’s toilet – where she shouts and splashes about – in Hogsmeade in the Wizarding World of Harry Potter recently.

Of course there is a lot of humour attached to the day, I don’t take offence at that. Sometimes laughter can be the best way of raising awareness, with games like this Usvsth3M quiz and the Youtube comedy competition by Water Aid. But we must not forget the serious message behind this – it’s not all about fart jokes and whoopee cushions but real people with real suffering.

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Post festive blues – an over zealous fistula, too much pudding and impetigo

It might be three days after Christmas and most of us are finishing off our turkey and drowning in the reality of eating far too much sugar, fat and general stodge, but I’m determined not to let Christmas go. I don’t care if it’s days after the real event, I just can’t seem to accept that Christmas is over. It was over far too quickly for my liking. There wasn’t any snow, just rain and wind, and there wasn’t even slightly enough carol singing to satisfy my never ending need to sing loudly and off-key while jumping around like a teenager.


This year I want to make up for all those years that Christmas has just been another meal to try and sit through while my IBD kicks off. I want to get back the Boxing Day spent in a gastro ward with prisoners (literally) keeping me awake while bagging their handcuffs against their hospital beds and feeling like curling up in a ball and dying as a Scrooge-Esk nurse places a nil by mouth sign over my bed (I swear with a naughty twinkle in her eye, as if saying no more turkey for you) before racing off to tuck into the giant mountains of chocolates at the nurses station! Post Christmas has always meant two things – regret that I didn’t squirrel away more food for my enforced fast and an insane longing to be left very much alone.

Right now we are smack bang in the middle of that period where I never have any idea what to do with myself. It’s that bizarre period in between Christmas and New Year where all you can really do is: a) eat yourself into a new dress size; b) join all the other manic people and hit the shops. Today we tried to hit the shops. I won’t be doing it again. Firstly I seem to have caught a cough that makes me sound like I smoke 100 fags a day, my impetigo is back in my nose making me feel like I’ve tried to stuff burning coals up my nostrils, and my fistula is going mental. I just couldn’t cope in the crowds, I felt like I was going to have a panic attack. Indeed I felt the normal hot waves and flushes of panic I get when my Crohn’s/Colitis is about to have an incident. I tried looking around the shops, fighting the old woman hogging the Warehouse rail filled with dressed far too tight and young for her age, but ended up tensing my butt cheeks so hard to stop an unexpected escape of bloody mucus I must of looked like I was trying to crack a nut. I was determined not to loose sight of the dress I wanted to grab and not miss it by racing to the loo. I would have won the dress with my constipated elf impression too, if I hadn’t felt like I was going to pass out, and, due to my butt squeezing exercise, the hot mucus started to squirt out through my fistula causing me to almost double over in pain….hobbling out of the store I must have looked like id been punched in the stomach and kicked in the shins during a bargain bust up.

I think it’s safe to say I won’t be joining the throngs again. I arrived back home with two pairs of high-waisted jeans for a bargain price, but was so exhausted I collapsed onto the sofa. It seems so chaotic following the amazing magic and tranquility of the past few days enjoying Christmas and watching War Horse with my family…I’m going to do the rest of my sales shopping from the comfort of my home within metres of the loo to avoid anymore mucus moments.

I’m starting to think about next year and what I want from it. This year has been a mixed bag both health wise, emotionally and career wise. I’ve been through more pain than I could have ever imagined, I’ve been to hell and back, I’ve wished for death and I’ve come out of the other end. At the same time I’ve made some incredible friends, been on some stunning holidays, eaten like a King, swum, ran and jumped like an idiot. My weight has plummeted and then slowly built back up. I’ve been off work for half a year and then come back to two awards and recognition for a job well done. I’ve loved, cried, howled and giggled my way through 2013… but now it’s time to shake it all off and look forward to 2014.

Next year I will finally wave goodbye to my mucus fistula (fingers crossed) and the pain in the arse which is my rectal stump. And, if all goes well, I will finally slam the door in the face of the illness which has so far tormented me like a little snotty gremlin hiding under my bed for my entire life. When this happens the world will be my oyster, there will be nothing except myself holding me back. I will be able to go as far as I want and achieve whatever I want to achieve. But to do that I know I have another bout of horrendous surgery, another lengthy period off work and another painstaking recovery to go through.

Perhaps that’s why I feel so down. But I think it’s more likely to be the festive blues. Time to get my guitar out and trying to strum away those dark skies with some tuneless random cords I think 🙂

After all Christmas isn’t over yet…. As a friend said “we’re only on four turtle doves in our office”.

First swim with my stoma – the best feeling in the world

This weekend I felt truly free for the first time since my hospitalization six months ago.The bizarre thing is that although I have been feeling more human than I ever have during the 13 years I have suffered from IBD, ever since my operation I haven’t felt truly myself. It hasn’t been because I’ve been mourning my large bowel, or feeling unattractive – having my bag doesn’t make me any less attractive, if anything it has given me more confidence than I’ve ever had in my life – it’s because I haven’t been able to swim.

My lovely family - fish and chips at the fish quay

My lovely family – fish and chips at the fish quay

I know that might sound ridiculous, of all the things that have happened and I haven’t been able to do since the operation – from the very start where I couldn’t walk, wash or eat properly to struggling to comprehend an intimate relationship with my ostomy bag – that I would find the inability to swim the most restricting thing. But I really have.

Before my operation it didn’t matter how much pain I was in, how much blood there was or vomiting, all I wanted to do was to swim. Nothing would stop me getting into that water, putting my head down and going hell-for-leather down the middle lane. No amount of pain, blood and guts would stop me swimming. Swimming gave me exercise, focus and a way to get rid of stress. When I swam I felt the whole world drift away, any worry from work, home, hobbies, community projects just fell off my shoulders and into the pool and my mind would be free, unable to focus on anything apart from the repetitiveness of counting the number of lengths and, sometimes, annoyingly, dodging screaming kids.

Although some people would argue intensive exercise is not good for people during a UC/Crohns flare-up…from my experience I would argue the opposite. Running, jogging, hiking and dancing have always helped to give me focus on something other than the pain, and to ease stress – usually the trigger and exasperater of my particular disease. My main problem has always been over doing it. Usually by the time I’ve stopped swimming I’m sweating, which is something that’s puzzled a lot of people – just how do you sweat under water?

Anyway, normally swimming post surgery is not a problem. Ok its advisable and necessary to wait for any open wounds to heal and to not over do exercise in the first few months after an operation, and to basically take it easy – you don’t want to suddenly decide to become Michael Phelps over night. For me it wasn’t about fear but a great bit gaping scar that just would not heal and could not be submerged in water. Even a shower caused chaos – but there was no way I was going without them.

As I told you in the previous blog entry, despite still having my fistula pumping out gunk (into a bag, no hygiene risks here) my surgeon gave me the green light to submerge myself last week. He said I would be “fine” to swim and bathe, but to be sensible. So naturally at the first opportunity I went shopping for swim suits that flatter my new figure…only to be left almost crying on Chester’s high street as I realised no where stocked nice swim suits or high-waisted bikinis in the depths of Autumn – there’s simply not the demand.

The perfect coat shopping at Fenwick's in Newcastle

The perfect coat shopping at Fenwick’s in Newcastle

I was even left disappointed by Next’s catalogue range. I’d pictured lowering myself into the glimmering waters wearing a 50s inspired high-waisted bikini or a more Victorian ask bathing suit with stripes and all that jazz – I’m so nostalgic at the moment, I blame it on Mad Men – but the two viable options in the catalogue left me feeling far from inspired. It was a shame as I had been pinning my hopes on Next after a few tweets from ostomy societies and ostomates recommending them for their fab costume range.

Anyway, despite not being able to find my dream confidence-boosting costume my boyfriend booked us both a hotel with a swimming pool for our trip to visit my sister in Newcastle for her birthday. So after a rest on Friday night following the long drive I donned my very old post surgery swimming costume and went for a morning dip. Although my swimming costume didn’t exactly flatter my new body, with the lycra clinging around my ostomy bag, it didn’t really draw attention to it either. At first I have to admit that I was very self-conscious about it, pulling a towel around my waist to hide my stomach and bag, but once I got into the water I couldn’t have cared less.

Once in it was like I was alive again. I tentatively lowered myself in terrified that my bag might float off my skin or my fistula bag would fill up with water and fall off. But once I was in I had no concerns, but trying to stop myself going mental doing hundreds of lengths and giving myself a hernia. It was tempting, I was soon back into my natural rhythm, but after 20 blissful lengths I forced myself to give in – exhausted and realising I was working muscles that, well, hadn’t been used in months.

Very hungry after my morning swim

Very hungry after my morning swim

I’ve never been happier. I went swimming again on Sunday morning, doing 30 lengths at a fantastic pace, racing in between crowds of kids and generally getting back to my own good old self. I can’t wait to go swimming again, but with everything that’s going on now I don’t think that’s going to be for a while.