Crohns and shared houses – poop, farts, pain, and one toilet between 12.

So we are finally doing it, after months and months of shuttling backwards and forwardstoilet

from the city to the countryside me and my boyfriend of almost two years are moving in together. There are no excuses any more. I am on the mend from my operation, and now that I’ve had my ostomy operation the fears I had about living with other people (what if there in the toilet when I’m almost collapsing with desperation to go, and have an accident while waiting) are slowly fading. Now is the time to bite the bullet, combine our CD collections (sorry I mean iTunes accounts) and join the co-habitation trend that most of our friends appear to be falling into at a surprisingly alarming rate.

Over the years I have lived in a lot of shared houses, and I like to think that the experiences I have encountered from those sometimes horrific living arrangements have added to my character and made me the person I am today. For better or for worse. These houses of baked beans splattered on walls, endless mountains of washing up, dead mice in washing machines (truth) and lying in bed hoping that the terrifying, possible mass murderer that you live with, is not lurking in a cupboard waiting to pounce on you with a kitchen knife, have formed part of my journey into adulthood. They have forced me to learn how to use the washing machine, put up with other people’s minging and disgusting habits, and truly made me appreciate my own space.

Now that I live in my own flat I often wonder how I managed to live in shared houses with my Crohn’s/colitis. How did I cope during flare ups and during the long nights when parties were happening and I was too ill to even move? The answer is that I didn’t cope, I pretended that I did but I just got iller and iller every day that went by and living in a shared house was as bad for my illness as forgetting to take my meds for days on end. There were nights when I would be so exhausted it hurt, were the hours of pain and constant diarrhea had stripped my body of all its fight and every ounce of strength, but the pounding music in the room above just wouldn’t stop. I would lie in bed for hours and hours staring into the darkness willing them to go to sleep, willing for the uninvited guests to leave our house, so that I could finally get to sleep.

Whenever there were parties and I was having a flare it meant that I couldn’t, wouldn’t l

Roll - this is not my image but ARGH i feel their pain

Roll – this is not my image but ARGH i feel their pain

eave my room to go to the toilet no matter how bad the pain got. As the music boomed in the living room or upstairs I would lie on my bed curled up in a ball, huddled up as pain convulsed through my body while I gripped my teddy bear so tight my fingers paled white. Sometimes I even bit down on a pillow to stop myself screaming out in agony and terror that this would be the last thing I would ever do. Sometimes I even had accidents, often I passed out from the pain, but having only one toilet meant that going upstairs to sort myself out wasn’t an option, my disease just made it too embarrassing, oh and the fact that there was no lock on the toilet door didn’t help either.

Sharing one toilet between three is bad, between four is a nightmare, and between five is unbearable, and I’m sure that goes for anyone, but for someone with IBD (Crohns/Colitis) sharing a bathroom with even one person is problematic enough let alone a group. For me this was a constant worry. Even when I didn’t need the toilet I worried about having to go. It became something I would have mini panic attacks about…if I saw one of my housemates go up to use the loo I would instantly start to get warm and my heart would start beating faster, this intensified to the point were I thought I was going to have a heart attack if someone got in the shower or decided to have a bath. There were constant fears, what if I needed it while they were in the loo, how long would they be in the shower, what if I had an accident? It plagued my every thought, my every minute of living in a shared house over the years has been filled with anxiety. I constantly lived in fear of everything, from running out of toilet roll to my housemates finding blood splattered along the rim of the bowl, to people banging on the door to get in when I’m stuck in one of my 15 minute sessions of non-stop pain were my organs felt like they were falling out of my backside.

I was so terrified about running out of toilet roll I had an endless supply in my room. I decided to do this, well my mum did, after a truly horrible day when a housemate invited loads of friends round, naturally without warning or asking permission from anyone else. Normally five people shared the bathroom, when partners stayed over that became eight, but on that day with his extra mates we had 14 people to the one toilet.   We may as well have had an army staying with us, and the number of people combined with the copious amounts of spicy curry and beer they consumed that night meant that in the morning when I almost crawled up the stairs to the toilet due to the crippling pain ripping through my abdomen, the bathroom looked like a bomb site. I won’t go into detail but it looked like pigs had lived in it…needless to say it is a sight I will never forget. I had only bought a new pack of 12 toilet rolls the day before, but when I got to the bathroom there was not one scrap of paper in site. The bathroom was littered with so many cardboard tubes I could happily have made a Blue Peter Tracey Island (or something similar) but there was no loo roll. It was my worse nightmare. I was desperate to go, I was in absolute agony and knew that if I didn’t go soon I would pass out on the floor face down in something indescribable. To top it all off the dick who had used the last roll had left it on the holder with just a slither of paper in a ‘screw you’ kind of way…I HATE THAT.

What did I do? It was a moment of pure desperation, I have no choice and looking back I’m not ashamed of what I did, it was necessary, but it was definitely a low point in my illness. I’m sure you can imagine what I did so I won’t spell it out, but to avoid this shameful situation in the future I now always have a cupboard full of rolls, wet wipes and a handbag full of tissues.

Anyway I’m rambling, I’ll split this into two posts, more on shared houses and IBD next time.

Overwhelmed by your acceptance

Before I tell you about mine & Winnie’s ‘big weekend of adventure’ searching for Banksy’s famous street art and almost collapsing in the weirdly sweltering heat while lost in Bristol (yes Andy, we were lost!!), I want to say a massive heartfelt THANK YOU to all of you!

Me & Winnie at Gay Pride in Bristol - just a little bit burnt

Me & Winnie at Gay Pride in Bristol – just a little bit burnt

Four days have passed since I revealed Winnie in all her naked glory to the world, and I have been bombarded with tweets, Facebook messages and comments from people all over the world thanking me for sharing her.

For years I dreaded the idea of having a stoma. In my mind the birth of Winnie meant I would have to live the rest of my life trying to hide the pink lump on my stomach, covering her up with baggy jumpers and bin-bag style shapeless outfits. I thought I would be living the rest of my life in shame. People would point and stare at the shape of my bulging ostomy bag under my clothes, and I would be labelled a freak, disgusting, minging or dirty.  I thought that it wouldn’t matter what I wore, where I went, what I tried to do with my life or who I tried to confide in, no one would ever look at me as a normal 25-year-old woman again (not that I have ever been normal #lol).

Hope you can read back to front

Hope you can read back to front

I guess I thought that once I had my operation I would just be that girl with the bag of poo on her stomach. I guess I believed that my stoma would define me, just as my Crohns had done in the past.

For example:

Last year I was out celebrating a friend’s birthday. We were having a lovely night, chatting, drinking wine and gossiping at her gorgeous flat before heading out on the town. I was feeling ill, but wanted to have fun and ended up talking to one of her friends (who was a medical professional) about my Crohns/Colitis. She seemed understanding, and asked all kinds of questions, which I happily answered. Everything was ok until a couple of glasses of wine later (I only had one or two, she might have had bottles), when we were dancing in a packed bar and she yelled ‘OY CROHNS’ across the dance floor at me.

Looking back I wish I had gone up to her and said something witty and cutting in response. If my friend had heard she probably would have slapped her in the face. But at the time I was totally shocked into silence. She had called me by the name of my was like I had been slapped in the face! Needless to say I headed home soon after the ‘incident’ and have never spoken to that rude and nasty individual again!!

So after all my years of worrying about the world not accepting my stoma – or even me coping with living with my stoma – words cannot describe how it has felt to receive so many messages of support from fellow IBD sufferers and ostomates from all over the world. I am honestly speechless (and if you know me that doesn’t happen often). I have been called an ‘inspiration’, ‘brave’, ‘positive’, ‘sunny’, and Winnie has been described as ‘beautiful’ and ‘perfect’. I have never been one to take compliments easily, and I have certainly never been called an inspiration before, so I was shocked and overwhelmed as the comments came pouring in via twitter, and my voice even started to quiver with emotion as I read them out to Andy while he was driving us to Bristol for one of my more arty challenges. 

When the tweets came rushing in I was half expecting a flurry of negativity. I thought I was about to be bombarded with 140 characters of hate and disgust, telling me that I was ‘minging’, ‘revolting’ had a ‘penis on my stomach’ or ‘poop coming out of my side’. But instead I watched as you all embraced Winnie for all her naked, pink, slipperiness, and welcomed her into the world with a massive ‘hi, lovely to finally meet you’! I waited for a long time for that message of hate and, guess what, I’m still waiting!

There are no words

There are no words

I hope that showing you Winnie naked and revealing the bare truth about life with a stoma will help the world to understand what living with an ostomy is like. Your messages have truly touched me, and if just one person out there is able to see past their preconceptions about what life with a stoma is like; see past their crippling fear of living with an ostomy; or even gain a little understanding of what a life-changing operation this really is, then showing Winnie to the world will all have been worthwhile.

You have all made me feel so accepted, so welcome, and so natural. It has been a feeling that I have wanted for so long – don’t get me wrong many people in my life have accepted my Crohns and my ostomy, my family, friends and boyfriend have been amazing about it – but I have never felt this accepted for who I really am in my entire life. With Winnie I feel weller (i know its not a word) than I have ever done in my life – she makes me feel fitter, happier, freer, stronger and more independent than I could ever have imagined. But now I feel a part of something bigger, something tightly woven and strong. I feel like I have been given a massive pat on the back or hug from the world, told I am ok, and welcomed with open arms into a new world of understanding, acceptance and hope.

You guys and the giant marshmallow have made me soooo happy

You guys and the giant marshmallow have made me soooo happy

I may still come out of the toilet with my skirt tucked in the back of my knickers (happened at weekend and flashed special ostomy pants to everyone in Starbucks), she might make farting noises during meetings, meals and intimate moments, and I might still nap like an old lady in the middle of the day, but you have accepted me and my stoma without raising a disgusted eyebrow or questioning our cuts and chainsaw scars – and that’s more than I could ever have hoped or dared to dream of!

Anyway, because this is a little long I won’t tell you about me, Winnie & Andy’s big adventure in Bristol today, I will save that until tomorrow, but for now I will leave you with a taster of what’s to come….