Confessions of an ill person


If you looked at me you wouldn’t know I had an incurable disease. I look like everyone else. Ok, maybe not exactly, I’m a

You're ill?? You sure?

You’re ill?? You sure?

little (ok a lot) on the thin side, I’m often covered in bruises from millions of blood tests, and sometimes, if I’m lucky, you’ll spot me sporting a rather trendy hospital bracelet with my name on (in case I forget) and a gown that shows my bright red bum off to the whole world like I’m a baboon. Anyway, what I’m trying to say is that I’m not in a wheelchair; I don’t have to walk with crutches; I have all my hair; I have all my limbs; I don’t look a weird colour, pale or sickly; and I don’t have any disfigurements…so to the naked eye and to the world I’m not ill and I’m most definitely not disabled, which you would think would be a good thing right?

Most of the time it is! I am so grateful everyday that I can walk, jump, run, swim, and that I have the freedom to do the things that I want to do without being confined to a wheelchair..and I have to add that I have all the respect in the world for those who aspire to amazing things despite the preconceived limitations of their disabilities (aka ParaOlympians). But just because you can’t see my aliment it doesn’t mean it doesn’t exist. As a Crohns/Colitis sufferer I don’t want anyone to treat me differently, but I don’t want to have to walk around waving a sign saying “I’m ill…honest!” just so that people will let me into the disabled toilet without shaking their heads and muttering “how disgraceful, how dare that young woman use the disabled loo…there’s nothing wrong with her”, or maybe let me sit down on the bus when I’m obviously about to collapse through the effort of trying to stand up.

So as a long-term sufferer of Crohns/Colitis (still don’t 100% know which one, they’re now leaning towards Colitis) here are my confessions:

Before the op smiling as ever, but seriously ill!!!

Before the op smiling as ever, but seriously ill!!!

I know I’m a positive person. It’s a skill I have moulded from years of crippling pain, disappointment, broken promises and self hate. For most of my life I have lived a lie that has been so bloody convincing that I don’t really know what’s real anymore. If you were to meet me you would see what everyone else sees – a confident, happy person, who never gives up and never lets anything get her down. No matter how much it hurts, no matter how much I want to scream in pain, no matter how bad your horrible judgements because of my skinny frame or endless toilet visits, no matter the blood, injections and fatigue, I still manage to plaster a smile across my face.

You could spend all day with me and never notice that I am holding myself together with a tiny string of energy that is fraying and threatening to snap at any moment. I spend every day as a different person, a determined person, a workaholic, the sort of person who would never let anyone down, who won’t quit until the job is done and who gives everything 110%. I’m like a whirlwind in the office, and I guess my pet hate is lazy people. I never stop, my energy to others seems unrelenting, and my positivity in the face of so many issues seems to be endless. But inside I’m screaming as my body eats itself alive. If you were to look closely maybe you would be able to see the pain in my eyes, perhaps behind my blue eyes everything is empty? Perhaps if you stopped and really looked at me, pushed aside my over-the-top laughter, thick make-up and endless chattering, you would be able to see me my hands twitching with pain from arthritis as I attempt to scribble down an interview, or the way my body twitches as pain rips through my bowel or the deadness in my eyes as I try to cope with the face every morsel of food I ate for the past year has just ended up in the toilet bowl again.

Smiling so much can hurt. Living a lie every day takes a lot of energy and being positive when so many things are quite frankly shit is just draining. I don’t let many people see the real me. I guess I’ve never liked her. To me the real Rachel is ill all the time, she is weak, she is sick and she is not worth bothering with. The real Rachel is the person who crawls into bed and gives in to the pain and the fatigue. She is the side of me who throws up food quicker than it’s cooked. She is the person who is afraid of social events where people will see how little she really eats. She is the person who lives in track suit bottoms and baggy t-shirts, is covered in bruises from endless blood tests. She is the person who knows that feeling well will never really last, that the treatments will never really work and that it’s just a matter of time that my illness will kick off again.

That Rachel is the one I become on the night’s I arrive home alone, she is who I become when I unscrew that positive grin and put it to bed on my nightstand every night.

You could say there are two versions of me. There’s the Rachel that people see in public and then there’s just me, bare, naked and exposed. That’s the person people see when they visit me in hospital covered in wires and trying to hold back the tears. So now you know why I always want you to call ahead if you’re visiting – it’s so I can transform into the better Rachel, you know, that positive person you all know and love. She’s not for me…no, she’s for you.

Well she used to be….now the lines blur. I’ve been living this lie so long I might just be starting to believe that I really am as determined, hopeful and positive as she is every day. 

Why am I confessing all this? I guess it’s because of what happened yesterday…

Yesterday I woke up full of hope, questions and enthusiasm, ready for my meeting with ‘Mr Miracle Hands’ my

TRENDY

TRENDY

life-changing (I may as well say life-saving) surgeon, whose amazing handy-work brought Winnie into the world and banished some of the evil disease that has tormented me for the past 13 years. I was almost excited to see this ‘wonderful’ man, who I hoped was going to be full of answers and solutions to some of the weird problems I have been experiencing since my Ileostomy operation nearly 12-weeks-ago. I guess I thought that he would be able to snap his fingers and every issue would just vanish in a puff of smoke, that he would smile sweetly, say “don’t worry it’s all over, you’ve suffered for long enough and that’s it.. you can live your life now. We will fix you and from this day on your only worries will be whether your bum looks big in an outfit or which weird combination of coffee, milk and syrups to order from Starbucks”. He said some things, but to my disappointment it was nothing along those lines.

I guess I should be grateful, since the operation I have felt better than I have ever felt – well, that is, ever since I can remember. The crippling pain that caused black-outs, screaming ‘kill me now’ in public bathrooms, and left me literally crawling up cubicle walls, is gone. But it has been replaced by something else…something so much further down the scale that most of the time I don’t even notice it, but it’s still more pain than most people could deal with on a daily basis. You see the complications, the infections and the scar bursting open following my life saving operation have left me with more problems than before. I was used to the old problems caused by UC/Crohn’s, but these are new, alien and confusing problems and pains that, honestly, I am finding bloody hard to figure out.

My hope had been the ‘miracle hands’ surgeon was going to have all the answers. My hope had been he was going to say “let’s take out that remaining bit of colon, I should never have left it in, it is far too diseased”. I hadn’t expected him to take it out there and then, but I had hoped it would be soon. When he cocked his head to one side like a sad puppy and said ‘at least six more months’ or ‘possibly never’ due to scar tissue, complications and risks,  I have to admit something inside me died. I think the little flame of hope of living a totally normal life flickered and gradually burnt out. Obviously, me being WELL ME, I didn’t burst into tears or throw the all mighty ‘it’s not fair’ tantrum (believe me I wanted to), I think I made a totally inappropriate joke or laughed. In fact I even carried on doing it when he peeled back my wound dressing to reveal a very sore and oozy patch of skin that was like a scene from Alien, and expressed his horror that I’d managed to put up with such pain in the sweltering heat! I even made a joke when he declared he would have to put a THIRD stoma bag on it to drain the never-ending stream of puss:

ME: (something along the lines of)  “ooh so your adding another tool to my tool belt!!!”  (I’m sure he saw through my little act, I know my mum does (she always has)…

My three bags and some very sore skin

My three bags and some very sore skin

Anyway I couldn’t believe it A THIRD BAG!! I didn’t sign up for this. I signed up for just the one, when I signed that consent form and allowed this man to hack away at me I was under the understanding that their would be no complications. he would simply whip out my bowel, fit me with an ileostomy and that would be that…BUT NO!!! I should have known, I really should, nothing I ever do runs to course…my body screams DRAMA QUEEN!! I even joke to my surgeon that I am the most dramatic patient he has ever had – unfortunately he agrees! I was so desperate not to get another bit of plastic bagging attached to my skin that I wholeheartedly agreed when he said the only other option was to stick a knife in the over-granulated scar tissue and drain out the puss! Anyone passing the room at that point would have thought he was offering me a package holiday by the OH YES, FANTASTIC, PLEASE that was excitedly coming out of my desperate mouth. unfortunately he refused to do that, and I found myself whisked to another room, nurses buzzing around me, sticking one bag after another to my skin in an attempt to find one that wouldn’t make me look like Michelin Man once I had my tshirt back on.

Anyway, back to the surgeon. I quizzed him on everything. Now that they had my large bowel did they finally know what I had..surely they did? The truth was, after looking at the results he still couldn’t tell me 100% if it was UC or Crohn’s. He confirmed the results ‘swayed’ towards UC, but that it looked like they wouldn’t 100% know until they removed the rest of my colon, then it would be a waiting game to see if the disease attacked my small bowel…if so, it was Crohn’s Disease. What a fun game 🙂 I can’t wait to play that one, maybe we should put bets on it!

Hmm hope all this isn't for forever

Hmm hope all this isn’t for forever

By the end of the appointment I had been called brave, tough and a ‘good coper’ – I didn’t feel any of those things. It must have shown as at the end of the appointment, as I was being whisked off to get my third bag plastered to my ever-growing tool belt, the surgeon grabbed me in a big bear hug and held onto me like I was being taken off to die. He told me how brave I was, how well I was looking, and how much I had been to stay so positive despite what I had been through. It was awkward but nice…despite everything that has gone wrong, the wonky epidural, the split-open scar, the infections, I would still, if I had to, trust this man with my life (even if he is a bit touchy-feely and holds my hand during appointments).

And after all this crap what did I do? I didn’t go home and cry did I NOOO!! I went off to the beach with my parents and pretended I was happy as larry about the whole thing…and because I did I had a really nice day. But today as I ring the specialists and surgeons for the 10th time and get “ring the other team” or an answer machine message, as I desperatly try to force them to put me on meds for my remaining colon, which is becoming more and more diseased and painful by the minute, I am feeling desperatly low and upset.

Me smiling at the beach

Me smiling at the beach

I guess I have figured out, finally, that I’m really bloody ill and a quick-fix operation is not going to cure me. I’m frightened. Frightened about what the future holds, about my health and the impact it will have on my life, about future surgery, about more time off work. The truth is that despite my happy face, quick wit and go get ’em attitude in life, underneath it all I am bloody terrified.

And you know what???? That’s ok, I’m allowed my bad days.

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Me & Winnie talk to USA, spurt crap all over the place and rant about hospitals


Over the past few days I have been finding it really hard to stay awake. I honestly can’t seem to keep my eyes open for longer than around an hour at a time. While I am finding this frustrating, and, if I have to be totally honest, a little worrying (this was what was happening before I went into hospital for surgery), it has undoubtably led to some rather amusing situations which even I can’t help but laugh about.

Oooh pretty flowers

Oooh pretty flowers

I have fallen asleep in packed hospital/doctor’s waiting rooms; on toilet seats; while watching TV; in coffee shops; while on the phone; in cars and, most embarrassing of all, when people are talking to me! I have even fallen asleep mid-sentence and woken-up half-an-hour later thinking Where Was I?? – I know…you couldn’t make it up!

In fact on Wednesday I became so concerned about my unpredictable slumbers that I decided it was high time that I gave in and went to the doctors to find out what the hell was going on with my worn-out body. I mean, I am obviously either dehydrated or lacking in some sort of vitamin or mineral which helps make it possible for normal people to not fall asleep every 10 seconds…imagine a world like that, trains would crash, bank robbers would be found leaning against safes with dribble pouring down their faces and bags stuffed with cash having a little snooze, and the Prime Minister would be found sat at the desk in No 1o with his slippers on, cuddling a cute teddy bear called Maggie and snoring into a mountain of red boxes while chaos erupted on the streets below. I mean nothing would ever get done, would it?

Trying to watch the tennis but drifting off

Trying to watch the tennis but drifting off

While sitting in the waiting room, which was packed with screaming kids with snotty noses and old ladies with bad hips, I started to feel that awful tiredness coming over me like a wave. Feeling my eyes starting to drop, I pulled my Kindle out of my handbag and tried desperately to read this week’s book, fighting with every tiny ounce of energy in my tired body to focus my vision and stop the words blurring, bouncing and leaping across the screen. I must have read the same sentence twice before my head dropped and I fell fast asleep, probably snoring and making slight purring or snorting noises similar to those you would normally hear in a farmyard or coming from a pigsty, and undoubtably dribbling and pulling some sort of horrendously embarrassing face (hope those pics don’t turn up on the internet). I woke-up around 20 minutes later after, much to my surprise, a sheep (I don’t know why a sheep) in my dream started calling my name! Even though I was dreaming I knew that something wasn’t right about this as; a) this sheep didn’t have a starring role in the dream; b) sheep do not talk; c) my name sounded like it was being called from another world, it had an echoey shouting underwater quality to it, which just didn’t sound like it was coming from inside my pleasant slumber world. I woke up with a jerk, pulling my dribble stained hand away from my cheek, to find the not-so bad-looking doctor (it had to be him right #typical) leaning over me calling my name, with a strange expression on his face, which I could only interpret as somewhere between amusement and disgust!! I wouldn’t say I have never been so embarrassed, as that would be a lie – I have had tubes shoved where the sun doesn’t shine by doctors who resembled Brad Pitt ( not the ideal first impression for any girl to make) and been stopped in the street by crushes and butter wouldn’t melt almost Calvin Cline underwear models for directions or an annoyingly long conversation, knowing that any minute I’m going to have a poop related incident – but I have to say that I must have looked shocked and humiliated as I staggered towards his office, no doubt with my hair stuck to my face by drool and a tell-tale red hand-shaped-mark imprinted into the side of my face. THE SHAME!!!

According to Doc I wasn’t dehydrated as my tongue didn’t look dry (don’t ask how he

Ohhh another smelly pressie for Winnie

Ohhh another smelly pressie for Winnie

came to that conclusion), he didn’t think I was lacking in anything serious as I didn’t look ill and my blood pressure was ok (saying that it was its normal abnormally low self) and I had an average temperature. He put the whole thing down to exhaustion and my body trying to heal itself following the loss of my bowel…which, he at last enlightened me, had been all torn out apart from the tiny and problematic rectal stump. But just to be on the safe side, and because he is a rather thorough doctor, he had a feel of my poor tummy, and prodded at a protesting Winnie, who at that moment, in what I decided was an OY! HOW DARE YOU TOUCH ME!! protest, decided to gurgle and erupt some fresh, warm poop into her freshly changed bag, before letting out a series of hideously loud and obnoxious farts – thank God he hadn’t taken the bag off!!!

I then had to sit in an uncomfortable state of silence and intolerable embarrassment for the rest of the appointment while he rang the hospital to arrange a blood-test and tried to get hold of the IBD nurse to change my medication, so that poor Winnie would no longer have to spit out the giant horse-tablets whole every day.

All I can say is that I was relieved to get out of that tiny room…and, I am 100% sure he was glad to see the back of us both.

Up set and drenched in town meeting a friend

Up set and drenched in town meeting a friend after doctors humiliation

I have had to tell Winnie off multiple times this week. She has spent the whole week thoroughly disagreeing with everything I eat, drink and so much as look at or think about putting in my mouth. I’m honestly starting to think that she enjoys testing me, and is trying to see how far she can push me before I race to the hospital screaming TAKE HER BACK, I’VE CHANGED MY MIND, GIVE ME A DIFFERENT MODEL. And, before you say it, I know that having a stoma is not like owning a car, and that I can’t take her back and exchange her for a soft top if I don’t like her after 21 days, but did I have to get stuck with such a madam?? I’m honestly sure that most people don’t have this much trouble with their new friends 😦 but mine is a total character, she doesn’t seem to know if she is coming or going, happy or sad, fussy or not fussy, working or refusing to in protest for some totally unknown cause.

Take for example yesterday, which was Winnie’s annual changing day (she get’s changed

Winnie, Oscar and Felicity post nuclear explosion in bathroom

Winnie, Oscar and Felicity post nuclear explosion in bathroom

every other day, so she is always clean and fresh and looking her best). I was halfway through changing her, I had cleaned and dried around her bottom and had smothered her with special barrier protecting cream so she didn’t get red and sore from the adhesive Flange (horrid word YUCK), and had decided, just for a second, to take my attention off her and move onto cleaning my wound and washing out Oscar (my remaining colon poking through my stomach #nice!), when she decided to have a totally paddy to really p**s me off and get my attention. Without warning she started convulsing, her entire pink, plump body started moving in and out like it had a life of its own, and then suddenly she erupted everywhere, spurting fountains of fresh, smelly poop all down my leg and all over the bathroom floor. PANIC STATIONS. I grabbed layers of tissue, and, basically anything else I could find and desperately tried to plug the leak, but nothing wanted to stop her, she was on a roll and was determined to teach me a lesson for ignoring her!! It was total bedlam, and when it was over, and she allowed me the few seconds of ceasefire to clean her like a little baby and nestle her bag in her bag – well, I pretty much stuffed her in, in an attempt to teach her a lesson – I collapsed in a heap on the bathroom floor before finishing the job by putting on my dressings and having a much-needed wash and clean-up of the crime scene.

A slightly steady moment at the castle..felt like a princess

A slightly steady moment at the castle..felt like a princess

She also had a major paddy on our day out with the folks to Cholmondeley Castle on Thursday. The plan was to go out to the castle’s grounds for the day to look at the pretty flowers and enjoy a scrummy picnic on the manicured lawns. And that’s exactly what we did, but not without Winnie and my exhausted body trying to add some much UN-NEEDED drama to the occasion. We arrived at the castle after I had fallen asleep mid-sentence while talking to my Mum and Dad in the car…I think I had been telling them about a lovely offer I have had from an amazingly generous person to pay for one of my more expensive challenges, when, totally out of the blue I fell fast asleep half way through a sentence. It was something like “I just can’t believe he would do such a….zzzzz”!! My poor parents must have been totally bemused and confused as to whether to wake me up, let me sleep, or drive me straight to the A&E department and have me admitted for weird sleeping patterns and inability to stay away even when talking.

Anyway, anyway, anyway. We arrived at the castle – well they arrived and I sort of dozed

A very windy picnic with the Flints

A very windy picnic with the Flints

into the land of the living as we approached the massive estate – got out of the car and started to walk around the stunning gardens. As we got just about far enough away from the car, in the middle of exploring some gorgeous rose beds, with me trying to take professional style photos of various multi-coloured roses with my not so professional and rather knackered camera phone, I suddenly realised my legs didn’t want to behave themselves anymore. My poor legs appeared to have acquired a life of their own (Micheal Jackson stylie), and were suddenly refusing to take my body in; a) the right direction; b) anywhere that required them standing. They appeared to be buckling under the simple pressure and decided to trip me up and make me stumble all over the place, almost sending me tumbling into thorny rose bushes and making me look like an overgrown toddler trying to advance from crawling a week or so too soon. My poor reliable Dad seemed to spot my problem almost from the word go and hastily rescued me from landing facedown among the rose bushes, hooking his arm under mine and sticking by the side for the rest of the day, in an attempt to stop me costing millions of pounds of damage to Lord and Lady Cholmondeley’s extravagant flowerbeds. I will be eternally grateful.

Me and the pretty flowers

Me and the pretty flowers

If it wasn’t bad enough that I appeared to have lost control of my limbs and was walking around the grounds in a zombie style trance, barely managing to keep my heavy eyes open, Winnie decided that she had been ignored for long enough and decided to have an almighty paddy in the grounds public toilets. After years of suffering from Crohns I have a massive dislike for public toilets, but I am also always eternally grateful that they exist to help save me in my frequent moments of desperation. I hate how dirty and unkept they are, and that there is always the risk that you could be attacked by a random drunk/drug dealer hiding in one of the unlit cubicles, and that entering a cubicle is like playing chicken or guess who…you never know what will be behind the door or under the toilet lid SURPRISE!!! (yucky, ewh, I feel sick even thinking about the revolting things I have seen, why do women do that in toilets?) Anyway I ventured inside these outdoor toilets, which were not really that bad as far as public loos go..they had toilet roll which wasn’t strewn all over the place, and there was nothing nasty floating in the bowl (puke!!). I went to empty Winnie to find, horror of horrors, that the loo roll was in one of those health and safety round containers, and for the life of me I couldn’t find the end of it to pull down! So I stood there holding Winnie’s end with one hand and frantically searching for the end of the roll with the other..it was frustrating and by the time I had thankfully found it, I will leave it to your imagination, but it took a hell of a lot longer to clean her up than it would have done had that flaming protective cover not have been there!!!!

Yes, I know that wasn’t Winnie’s fault and it’s unfair to blame her, but for the rest of the

in the garden enjoying a few rare rays of sunshine yesterday before Murray mania

in the garden enjoying a few rare rays of sunshine yesterday before Murray mania

afternoon she threatened to kick-off whenever we ventured more than a metre away from the only loos in the hundreds of acres of grounds. She did it during the picnic, and I continued trying to eat my tea and grab bits of food and cutlery that kept being blown away in the wind, while feeling her swelling into a gas-filled balloon under my jacket. While we were looking at the weird and wonderful petting zoo animals, and even on the way back in the car where I thankfully fell asleep two seconds into the journey so didn’t notice her constant tantrums or the horrible bumpy Cheshire roads.

When I got home I raced straight to bed and slept for a lovely few hours 🙂 it was bliss, until Winnie woke me and insisted upon being changed again following her first slight leak, which was caused by the bag lifting up slightly in the heat I think. Which I handled much better and more calmly than I thought actually. I then had to dress her in the first bag I have ever cut for her, having run out of the ones the Stoma Nurse had cut…this was a nerve-wracking experience..lets just say I didn’t have much confidence in my own cutting abilities and accuracy and spent the entire sleepless night checking her for any sign of leakage or damage caused by her collar being just too tight.

Oh and before I forget, I spent the other evening, after lots of messing around not being able to find each other (first time I had used Skype) talking to a lovely lady across the pound about my life with Crohns for a book she is writing. It took forever and there were a few awkward moments, and hilarious moments where I think we just didn’t understand each other…she even called my accent lovely 🙂 HMMM!! Anyway when we eventually finished at midnight (there had been some confusion over time differences), I sat in bed unable to sleep worrying about exactly how much of my life I had spilled to her during the interview. And faced the horrible reality that this is how it must feel to be on the other side of the journalist’s notebook…a rather worrying feeling of hmm should I have said that. But, hey ho, if it helps others to come to terms with their disease I don’t care if they hear about my shameful poop accidents!

Moving on to my first BIG Bowl of cereal...before today eating out of tiny bowls for kids

Moving on to my first BIG Bowl of cereal…before today eating out of tiny bowls for kids

Anyway, that’s enough moaning and rambling for one day. I will be gutted when Wimbledon finishes this weekend, as despite the fact that I have been falling asleep at the worst possible moments (tie-breaks and match points) during Murray’s matches I have throughly enjoying screaming at the telly and watching my boyfriend transform into a madman, screaming and calling the poor tennis player all sorts of horrible unnamable things as he throws himself around the court in an attempt to make us all proud. He really can be a twat when we are watching sport (sorry babe), but it is funny to watch 🙂 I’m sure it’s just being passionate about the game, well that’s what he tells me.

So now I’m going to go back to writing my complaint to the hospital regarding my recent stay, where they tried to poison me by constantly trying to feed me lactose, cripple me with a badly placed epidural and basically left me wasting away, depressed, in pain and confused. As I don’t want to bore you so I have done a mind-numbing video about it which you can watch below.

Where’s Winnie at the races, at the seaside and doing ten rounds with Mike Tyson


Before I share any of the crazy adventures me and Winnie (the poo bag) got up to at the weekend, and

Please bid on these stunningly illustrated Disney books :)

Please bid on these stunningly illustrated Disney books 🙂

spill all my inner most thoughts and secrets, I must first ask you a massive favour….PLEASE, PLEASE, PLEASE bid on the eBay items which we (me and Andy) are flogging following our Bargain Hunt style adventure a couple of weekends ago. If no one bids, not only will I be horrendously out-of-pocket (despite how über glamorous I always look I’m not rolling in cash, mostly because I am a lowly reporter, and I’m addicted to nail varnish and expensive coffee) and lumbered with even more (luxurious) yet pointless items cluttering up my already stuffed to the brim flat, but I will have FAILED, YES FAILED, one of my challenges. Surely you guys (my dedicated readers :)) can’t let that happen 😦 And, if what I fear will happen does indeed come true, I will not even break even let alone raise mountains of cash for Crohns and Colitis UK to help them in their fight to help people understand the true pain of this evil, evil illness and possibly even find a cure!!!

WHY would you not want an amazing MANDY ANNUAL???

WHY would you not want an amazing MANDY ANNUAL???

I am not trying to emotionally blackmail you all (perhaps I am a little) but imagine the SHAME of me failing to sell an item on eBay. It was meant to be one of my simplest challenges, but the fact that no one has bid on the items which I battled exhaustion, hunger and a very hyperactive stoma to source out for you lovely people to buy, is making this challenge the hardest and most demoralising one I have faced so far….So please PLEASE PLEASE put a smile back on my face and bid on my lovely items…trust me you won’t regret it 🙂 Just remember a lot of determination, sweat and (almost) tears went into finding these goodies from those 400+ stalls…you would be raising money for a very good cause, saving me the humiliation of having to post on here that I have failed and sending a giant cheque with the figure £0.00 to an amazing charity…and make a little, very tired and sleep-deprived young lady and schizophrenic stoma bag very happy indeed, and stop her looking like this (pic of me in black and white looking very miserable):

If you don't bid, me, Andy and Winnie will be soo blue and never smile again!!

If you don’t bid, me, Andy and Winnie will be soo blue and never smile again!!

If you want to bid on the amazing items – a vintage Man United book; Stunning 20th C Japanese miniature cup and saucer; Knightrider collector’s item; Winnie the Pooh Book; Disney education and tales album set; Classic Mandy Annual; Sooty Book and a Bronze ornament of a brass player – please click on the links above (the words underlined DOH!!) or the picture (to right) which will take you to the seller’s page!

Anyway, now that the emotional blackmailing is over and done with, I can tell you about Me and Winnie and our rather exciting, exhausting and windswept weekend. Basically what follows is the story of a weekend where Winnie’s non-stop teenage tantrums finally pushed me into the dark world of gambling; Winnie suffered her first panic attack (or it may well have been stage fright) and I learnt a key rule to life with a temperamental stoma – never wear a jumpsuit!!!

So after months of waiting the girly day at the Races finally arrived. On Saturday morning I woke up after another typically restless night feeling exhausted and suffering from such crippling fatigue that I could hardly muster the energy to walk to the bathroom let alone spend a whole day screaming at horses and standing around in six-inch stilettos. All I had wanted, prayed for, begged for, was one decent night’s sleep, so that I wouldn’t wake up looking like a zombie crawling out of a grave with massive bags under my eyes and my hair stuck up like Sonic the Hedgehog…but, alas God obviously had other plans for me, and typically the night before the Races saw me sat bolt up right in bed with my normal skin crawling itchiness, and my poor broken body screaming to sleep while my brain ticked away over every problem, flaw and tiny hang-up, wittering on and on about how Winnie would leak and all the thousands of unnaturally good-looking punters were going to see crap dripping down my dress (pardon my French). I know that seems ridiculous, and the chances of that actually happening where, quite frankly, next to none, but I couldn’t get the image out of my head that I was going to have an accident in a very public place, and that, when it happened I would be stood in a pool of crap directly in front of a large gang of heavily made-up girls who would all laugh and point and shout “Ewh she’s got s**t dripping down her leg…”she is, isn’t she, she’s sh***ing herself” !! or some other horrible comment, involving me and a pile of excrement. All night I sat awake trying to distract myself by reading Clare Bolding’s autobiography, but nothing could shake the image of Winnie deciding to have her first proper paddy in the middle of Chester Racecourse and me, red-faced and humiliated, being escorted out of the paddocks by burly security guards and manhandled into the back of a police car for ‘defecating in a public place’.

Me and my beautiful girlies at Chester Races

Me and my beautiful girlies at Chester Races

On the day I needn’t have worried at all, because Winnie, out of fright or in an attempt to prove that I had seriously misjudged her, decided that she would simply stop working. She pretty much went on strike for the afternoon, and didn’t let a single morsel of food, gas or anything else that could have caused some sort of unpleasant surprise pass through her pink gates. You would think I would have been relived that I wasn’t having to run to the bathroom and back to sort out the growing bulge under my extremely pretty dress – if you haven’t met Winnie yet, you’re in for a treat.. she performs an amazing but humiliating magic trick, transforming me from a very slender size six into a beached whale, which is eight months pregnant with obese triplets…and most amazingly of all she does this magical trick in a blink of an eyelid – I wasn’t at all relieved. In fact, you could say that I was terrified by her new stunt. This was the first time that Winnie had gone on strike and it was pretty damn worrying. From the moment we walked into the racecourse Winnie just decided.. ‘nope, I am not playing this game, I am not going to work, I am going to block-up’, and she did – very effectively I might add. So while my friends sipped horrendously expensive champagne and shouted at their chosen horse to get its butt into gear (ok, not their exact words), I worried and worried about Winnie, constantly prodded her through my dress and, well pretty much spent the whole day panicking about whether there was something seriously (like rush to A&E and slit me open) wrong with her, and through attachment to my body, seriously wrong with me!!

The result of all this worrying is that I must have had a rather quizzical and bemused look on my face for the entire day, something that I blamed on not understanding the betting system, (which is true, I still don’t understand the odds, ranking or returns) and, to all of the thousands of people who saw my grumpy and concerned features, I must have come across as a right moody cow and a proper party pooper.

So anyway, anyway, anyway, back to the morning events. For months I have seriously pined for this amazing perfume which is well out of my measly trainee reporter’s salary price range. Let’s just say that if I wanted to buy it I would have to live off fresh air and baked beans for a couple of weeks – but then again the perfume would cancel out the horrible smelling gas from the student-esk diet!! #lol!! In fact I love the perfume so much that every day since the lovely lady in Debenhams squirted the yummy scent on my wrist I have dragged my exhaus

Awh my amazing gift from my amazing bf

Awh my amazing gift from my amazing bf

ted and broken body all the way to Browns in Chester to spray on Victor &Rolf’s Flowerbomb, just so that I don’t have to fork out the £70 to buy it. I have been doing this daily trip for almost six weeks now. I like to think of it as the  cheapest way to own a perfume….but in the past week or so I have been forced to try other perfumes. You see the staff are not stupid and have started to cotton on to what I am doing, and are now really rather annoyingly hanging around the Victor&Rolf stand and asking me if I need any help with my purchase, forcing me to make up elaborate stories about birthday lists, wedding presents and anniversaries – It was seriously getting to the point where I was going to be shamed into buying the product or be arrested for stealing hundreds of pounds worth of free perfume!! Anyway after waking from his angelic slumber and turning to face the Creature From The Black Lagoon, my lovely boyfriend walked me into town and bought, yes bought me the biggest bottle of Flowerbomb he could find. It was the singular most lovely and romantic gesture, which was totally ruined by the satisfied and knowing look of the saleswoman, whose eyes screamed “Thief Thief Thief” as she scanned the hideously expensive gift through the till. And, as a final act of disdain, she even refused to give me the pretty pink gift bag, instead thrusting the box into a clearance plastic carrier bag, which made us look like we had just been shopping at Poundland, not spent the equivalent of a week’s wages (ok, I’m over-egging this, but you get my point) on a bottle of perfume.

Anyway, after returning back to the flat happy as a Spring chicken with my first ever bottle of ‘real’ perfume – when I say ‘real’ I mean not mixed with water or bought for £10 from an Avon catalogue. Well, I was happy until I realised I had less than two hours to get ready, then I turned into a ranging maniac, racing around the place and basically stressing at my poor boyfriend (bear in mind that he had just spent a horrendous amount of cash on me just to see me smile) and unceremoniously shoving him out of the door so I could jump in the shower and scrub away any morsel of dirt, sweat or anything else minging in an attempt to transform myself from the crazy, sleep deprived madwoman in the mirror into a stunning Princess. It seemed like ‘Mission Impossible’, and it really was. Time raced past as I attempted to tame my wild hair, which I luckily had had cut and coloured the day before so only needed re-blowdrying and straightening, and slather myself with layers of makeup. I lost valuable minutes when Winnie decided to start working while I was changing her, spitting out yesterday’s dinner on my bath matt as I searched frantically for kitchen-towel and realised I had no idea where the dressings for Oscar where. Eventually, after days of consideration I had settled on the black dress, which was, and still is a big deal. I’m not sure if I have already told you (if I have I’m going to tell you all again anyway GROAN) but

Ready for the Races - THE DRESS

Ready for the Races – THE DRESS

I bought THE DRESS at Warehouse (my favourite shop, but can only afford, well justify, buying things in the sale) before I knew I was going to have my operation. At the time buying the dress was a big risk as: a) I committed the cardinal sin of not trying it on; b) it was basically backless so I wouldn’t be able to wear a bra; and c) it was long, and before my op I never, literally never wore dresses past my knee. THE DRESS is daring and well totally glamourous….I bought it because I loved it, and when, on the painful afternoon following my operation I bit the bullet and bagged up all the clothes I knew I would never be able to wear again due to the birth of Winnie, it almost ended up in the charity shop bag, but was saved only because I decided to keep it in the hope that one very special day I would be daring enough to at least try it on in the comfort of my own home. So imagine my surprise on Saturday when I put on THE DRESS and it fitted perfectly, in fact if you have to be picky you could say that it was a tad on the big size for my tinie post surgery frame. I was ecstatic and decided straight away that if I didn’t wear this dress to the races I would not only regret it, but I would most probably never find another moment to wear it again in my whole life. I owed it to the dress 🙂 I looked fabulous, in fact you couldn’t see Winnie at all! I was amazed…you would have to look really really close to spot the tell-tale creases of the over-lapping bags, but really you couldn’t see her at all 🙂 RESULT!!! One thing I had totally forgotten in a typical me way was that although it was getting rather warm outside it might get nippy later, and, with the open back and all I wouldn’t be wearing a bra…yes, you’ve guessed it, I forgot to get the nipple covers. WHOOPS!! So after all that trying to disguise Winnie I undoubtably drew attention to myself by having rock hard nipples sticking out through my stunningly shear dress as the wind picked up during the last race!! EEK!!

Dreaming of winning big!!

Dreaming of winning big!!

Anyway the day was gloriously hot, and despite ending up with a rather odd suntan due to the criss-cross style of my dress 🙂 it was a perfect day to join the flocks of punters tottering in their ridiculously high high-heels to Chester Racecourse. Despite Winnie’s protest I had a fantastic time, I didn’t win, but there again I didn’t bet anything that in theory I couldn’t afford to lose, so I would have never won big. I had a few frustrating moments, such as when I was determined to bet on one horse but changed my mind at the very last-minute, and, you guessed it folks, that horse won, while mine may aswell have had two legs as it came tripping over the finishing line what felt like a year after all the others were back tucked in the stables. Well I suppose I did win twice, but that was when me and two of my mates decided to club together £2 each (ooh last of the big spenders) to put a bet on three of the horses, and as there were only four in the race we won….well I say we won, we got our £2 each back and an extra £4 on both occasions – which meant my total winnings for a hard day at the Races equated to a grand £2.60 – not even enough for a glass of water!!!

After the races my feet felt like they were literally going to fall off. Having not really walked in high-heels since before my operation a whole day standing in the baking heat wearing extremely pretty, but very uncomfortable glittery shoes, had left my feet screaming for my peppermint cream and the safety and snugness of my pink fluffy slippers. And I wasn’t the only one who felt like my feet were going to snap in two. So, head hung in disappointment I staggered back home, totally gutted that I for once felt well (well not really, but better than normal) enough to hit the town and experience my first Races drink in the city, but was being let down by my stupid and treacherous feet. All I had wanted to do since the start of the day

Me and my friend with the backs of our dresses

Me and my friend with the backs of our dresses

was to go to a new bar in Chester called The Church – basically an old derelict church which had been transformed into a luxury bar and restaurant but still had all the original features – and drink a glass of champagne, to basically say, I DID IT…I MADE IT THROUGH ALL THIS HELLISH CRAP!!! But it seems no one else really wanted to do that, and around half an hour later I found myself back at the flat wearing my trusty nightie and attempting to wipe the layers of makeup off my face. I was gutted, I had been made to do the sensible thing, and it was a total anticlimax…I felt cheated of my celebratory return to the night-life scene and like I was being forced to admit I was still to sick to be my fun, sexy, 20-something-self!

And if that wasn’t unfair enough, the moment I peeled off my dress Winnie decided she was abandoning her strike. In fact she did it with such gusto that I spent the rest of the evening racing backwards and forwards to the toilet – and to make sure I was reminded he was there Oscar threw in a few paddies just for good measure! Despite only having two small, and horrendously expensive glasses of wine, (oh and a glass of race’s champagne kindly donated to my experience by my friend, SSSSH don’t tell), I spent the entire evening feeling like I had been hit, and then reversed over by a bus carrying horrendously obese people to fat camp. I mean it really was unfair!! It was a night filled with endless nausea, sweating, and gurgling and groaning from places I didn’t know existed, and to top it all off all the other hardcore Racegoers where partying hard into the early hours of the morning almost right outside my door, not helping the unrelenting insomnia by rubbing it in my face that they were having an amazing time while sensible me was curled up in a ball of agony wishing I would die.

Home and upset

Home and upset

The next morning I woke up looking like hell, a common occurence these days (as you can see), and feeling like I had done 10 rounds with Mike Tyson in the few hours of sleep I had managed to grab. It literally felt like an elephant had walked into my room and sat on my chest in the middle of the night. I could hardly stand up straight as I raced to the bathroom to empty Winnie who was, as per usual, so full she was on the brink of causing a nuclear poop explosion in my pretty bedroom. As I was trying to sort myself out and make myself look slightly human, changing Winnie after Oscar bizarrely managed to fill up with soapy water while I was having a shower PANIC STATIONS PEOPLE!!! when Andy arrived to take me to his house for a relaxing day reading and starting to learn Francias (which I hope is French for French #lol). Now at this point, taking into account that Winnie was obviously in a foul mood so I would undoubtably be needing to pop to the loo every 5 minutes to empty her, I have literally no idea why I thought “ooh, today would be a good day to wear my new jumpsuit”. Yes people a jumpsuit, you know the outfit that you have to literally spend half-an-hour undoing to have a pee. It is the straightjacket of the fashion world – even Houdini himself would struggle to get out of a jumpsuit in a bathroom related emergency.

Me sooo fashionable...sooo the wrong choice

Me sooo fashionable…sooo the wrong choice

To make matters worse, when we got out to the car we decided (yes, for argument’s sake I’m going to say it was a joint decision) that we weren’t going to spend the day lazing around the house in a hung over style state, scoffing our faces and watching re-runs of The Vicar of Dibley etc…instead we were going to drive around 2 hours to the seaside in Wales. This idea was put forward by Andy, and because I couldn’t think of anything better to do, and the weather seemed glorious in Chester and I assumed it would be the same in Wales, I agreed. BIG MISTAKE!! Firstly, we all know how I feel about car journeys, and how the state of Britain’s roads make me feel like I have just ridden a camel over a rocky mountain range, so while the two-hour car journey offered up some breathtaking views of the Welsh countryside as we passed through Snowdonia, I spent the majority of it curled up in a ball almost crying through pain and getting increasingly angry that the silly mountain ranges were making my phone signal die and I could no longer Tweet my pain to everyone in the world. And, secondly, I could not have been more wrong about the weather. We turned up at the quaint seaside village dressed in summer clothes, with not a jacket, or waterproof between us, to find we had left the Summer weather behind in Cheshire and here we were faced with a typical British summer day, with nippy winds that tore through my thin playsuit and left Winnie shaking to  the core. I must have looked  right idiot as most people were quite rightly dressed for an autumnal day, wearing parkas and jackets, while I was wearing floral jumpsuit and a demin jacket, and to top it off I was wearing my rock star shades – which ended up not being a ridiculous as they looked as they saved my eyes from being filled with the sand which sandblasted us whenever we dared to walk too close to the sand.

Anyway we managed to find a restaurant, where we had the normal issues of waiters and chefs struggling with my diet and I ended up making up my own odd sounding meal which was surprisingly ok. I battled with my playsuit again and again as Winnie filled-up faster than I was able to cope with!! In fact I am almost sure that she was doing it in the hope that someone would walk in on me in the tiny, fly infested toilet, with my playsuit round my ankles exposing my bare breasts to the world, as yes, because of my painful scar I wasn’t wearing a bra!!

Very windy and sandblasted

Very windy and sandblasted

It was a lovely little town and we had a lovely time, but due to the weather and my terrible fashion blunder we must have started the drive back just under 2 hours after we arrived! Poor Andy, driving two hours with me whining the whole way, to enjoy a mediocre meal and getting sandblasted and then being forced to drive another 2 hours back home…luckily for him I slept the whole way back and woke up with a stiff neck and feeling grumpy and disoriented.

So what have I learnt from this experience…NEVER WEAR A ONSIE OR PLAYSUIT WHEN STOMA IS ACTING UP, AND ALWAYS TAKE A JACKET!!

There’s no shame in talking POOP, mooning nurses & yucky antibiotics


http://youtu.be/meTZDQ0qEjc

So I’m back on the dreaded antibiotics again! I always dread going to the doctors because no matter what the problem they always

Me & Winnie have a very bad day and night

seem to put me on antibiotics, in fact, I think they have put me on so many of them over the years that they may as well be giving me a little tablet with nothing in it for all the curing qualities it is having on my body….which, I am now sure, is totally immune to them.

Antibiotics never seem to do anything apart from mess up my meal times, as, if you follow the instructions correctly, which I always try to do, you have to take them one hour before eating or two hours after eating totally destroying all the advice my dietician gave me to help me gain weight and to give my poor beaten body nutrients and the energy to fight my evil Crohns/Colitis, who keeps coming back with bigger and better weapons every day!

I dread going on them and, probably like a lot of stubborn IBD and chronically ill patients, when I get an infection or complication that I know will require being put on those dreaded blue capsules I try to put up with it for a few days – (#ahem) Weeks – until it goes gooey and pussy and starts looking like a scene from Alien, then, and only then, do I face my fate and head to the doctor’s surgery with my tail firmly tucked between my legs begging for tablets or a miracle cure.

ARGH the big blue puke pills

ARGH the big blue puke pills

You see all the antibiotics do, and it doesn’t seem to matter what type they give me, is make me really horrendously nauseous. Honestly, it doesn’t matter if they’re for flu, a skin infection, eczema, conjunctivitis, or all of the above at once, they trump the thing they are meant to be curing by making me sick to the stomach the moment I pop the first luminous coloured coated capsule into my trembling mouth (almost went Mills and Boon then guys with the imagery #lol). But the cruelest thing about antibiotics is not the unfading nausea, but the fact that they don’t make you actually throw-up – here we go, I hear you all sigh, we knew she was Bulimic… But let me try to put it to you this way. Think of anytime that you have been horrendously hung-over and your stomach is tossing and flipping like a dingy lost in a massive storm at sea (think green and sick bags) you always reach that point where you think ‘I just need to be sick, I will feel better once I’m sick‘ – and sometimes you can’t…so it just sits on your stomach like a rock for the rest of the day, meaning you can’t eat or sleep or even smell food….THAT’S WHAT IT’S LIKE FOR ME ON ANTIBIOTICS!! I hope you understand what I mean now.

So today I dragged myself to the doctors to get my dressing changed on my ileostomy scar, which despite it being eight weeks and

Me & Archie too weak to get out of bed

two days since the dreaded op is still leaking and oozing horrible puss – basically it is just been stubborn and refusing to heal the right way. Let’s put it this way, my skin is trying to be radical, waving a placard and screaming I will heal, but not the way YOU THE MAN want me to!!! Instead I will heal from the outside and then spit through causing as much pain and taking as long as possible just to annoy you 🙂 I can almost hear it chuckling insanely as it rashes over and over granulates (oh get me – a medical term).

But despite my concern that the scar has gone all red, gooey and pussy, from the weird heat we are having in England at the moment (we are never satisfied with our weather are we?) and is now covered in red and brown eczema that is soooooo itchy it is a physical and mental effort not to scratch the dressings – I sometimes place my handbag close by just so it will rub against it and give it a cheeky scratch every so often as I walk to the coffee shop (I know that’s soooo naughty of me, and it won’t heal, but it just feels so damn good!) – the nurse said it seemed fine and put some iodine on it to stop any potential mastermind evil infection sneaking its way into my body and causing havoc.

HMMM bad spelling at Docs - should I be worried about other skills?

HMMM bad spelling at Docs – should I be worried about other skills?

Anyway, anyway, anyway my biggest concern and what led to me thrusting my bare naked bum in the poor bewildered nurse’s face, was a very sore lump on my butt that has developed over the past few days making it painful for me to sit on the loo or basically sit down anywhere at all. Before you all laugh, I don’t have piles – I have to add piles are no laughing matter, they are very painful and, yes (#snigger), I have had them many times before. As I told this poor woman about this lump, which has left me perching on the end of seats and tentatively sitting down, hovering above couches and benches like you do when you’re preparing for your bare flesh to hit boiling bath water (ouch!!), I could see her face gradually changing from the kind reassuring smile when she was changing my dressing to a stretched evil grimace. I swear I could honestly see her thinking ‘Oh no not another pimply bum I’m going to have to stick my finger in…Yuck!’ (obviously she didn’t say that, but, quite frankly, she didn’t have to).

So here’s the image. Me lying in the nurse’s chair with my girly knickers (with pretty stars on) pulled down around my knees and bum pointed unceremoniously in the air, with this poor middle-aged woman prodding my bum and me pointing into my bottom saying ‘I can feel it there, what is it?‘ – I have to explain here that because of Winnie and Oscar I can’t see the area down there…I mean it is hard enough to look at your underneath in the mirror anyway (which guys will know if you are checking yourself, which you should be) without two bags swinging in the way all the time (yes I know that sounds rude!) – and her going mmm ahhh in a ‘I don’t know what it is’ kind of way.

On the nurse’s table moments before sticking my butt in the air

This was one of those moments, which like on a night out when you suddenly realise you might have pulled, that you wish you had nicer underwear on…but never mind, that was the least of my worries as a second later the nurse started squeezing at the lump inside my bum cheeks so hard that I start squealing in pain – yes squealing like a little piggy. She squeezed and she squeezed saying ‘Are you ok? Can you feel that? Does that Hurt’ – I squealed something like ‘yes it hurts, I’m ok don’t worry’, but in my head I was shouting OF COURSE IT BLOODY HURTS YOU ARE SQUEEZING MY BUM OFF!!! Eventually, after what seemed like a year and some puss coming out of the lump later, she declared it was a small cyst, caused by the plastic enema I have been shoving up my bottom to calm down the remaining part of my colon and that I would need antibiotics.

Which is what leads me to gulping down this horrid blue sugar-coated tablet knowing, beyond any doubt, that I will wake up tomorrow as sick as a dog with a massive warty cyst on my bottom bright red and shining like a beacon on a rocky bay. ( I know what an anti-climax to a very long rambling story!)

Anyway the other night when I couldn’t sleep I vblogged another Ostomy Hour – I hope you LOVE IT and will tell all your friends about it 🙂 PLEASE, PRETTY PLEASE WITH MARSHMALLOWS ON TOP. It’s about the online IBD community and the amazing support just everyday people are giving others by sharing their stories on the interweb.

Since I have had my ostomy I have found so many brave Crohns and IBD sufferers who are selflessly putting themselves out there, basically having the balls to tell every little thing about their life in order to help others (in my vblog above I talk about when I did a tell-all article in the Evening Chronicle and the crazily large pic of me they used on the front grimacing like a maniac). They post every little hicup, embarrassing moment and gory detail about their symptoms, the illness and the way they cope living while being constantly attacked by IBD…it is just so refreshing to hear people being so blatently honest and revealing the unglossed ‘real’ version of how IBD sufferers cope every day – stripped bare with no regard to what people might think of them or what impact telling their stories might have on their own reputations or their careers.

So, thank you to all those brave IBD and Ostomy bloggers and tweeters….from my very heart you are amazing (I am not talking about me here before you think HOW BIG HEADED). Please carry on sharing your story so that we can rid the world of the shameful stigma attached to IBD.

If you want to read my story from the Evening Chronicle go to:

http://www.chroniclelive.co.uk/news/health/secret-shame-crohns-disease-nearly-1417593      

or click on the image below:

EEEK every Geordie recognised me :)

EEEK every Geordie recognised me 🙂

Me & Winnie disagree with vino & bounce along close to Jessie J and our brave Dad…


So I’m exhausted today 😦 let’s just say that I had far too much fun this weekend, which if you have IBD

(which includes Crohns and Ulcerative Colitis) is a recipe for disaster. Even before I had Winnie attached to my poor tummy I always found that my crazy Crohns or Colitis liked to pop up at the most inconvenient of times. Let’s put it this way….I would be feeling just slightly like a normal human being for a few days and would have just tried to live a little, go out, let my (very short) hair down and act like a normal 20 something-year-old when BOOM my illness would rear its ugly head in a kind of Peek-a-Boo “Here’s Johnny” way.

So yesterday was Father’s Day and I wanted to do a short V Blog to tell you about how amazing my Dad, and my family are and how important they have been in my journey through this illness. I love you DAD!!

So this weekend my poor, and extremely understanding boyfriend (I suppose you could call him my “better” half) decided to host a BBQ at his stunning house in the Cheshire countryside. His house is what we in the Ghetto call “something else” or “Mega Dope” (I’m sooo down with the kids). It is far too big, with massive gardens, and when you stay over you wake up to the sounds of cows mooing and birdies singing….it is paradise just miles from the city 🙂 I love it there!!! But Friday was the first time I have stayed there since my operation, and as a lady I had to take just about everything but the kitchen sink with me so that I could survive just two days! Well it is hard looking this good all the time #bigheaded

Anyway, anyway, anyway. On Friday night I made us both a healthy tea of pasta and veggie sausages and goat’s cheese. Which was YUM! Then we watched The Following, which, if you haven’t seen it is AWESOME, but terrifying, and being a proper wuss I spent half the time hiding behind a cushion and smudging my freshly painted nails by gripping my boyfriend’s hands so tight.

THE DRESS - I would never have worn this b4 Winnie - she is so much more cool than me

THE DRESS – I would never have worn this b4 Winnie – she is so much more cool than me

Then on Saturday the real fun began. We woke up to typical British horror weather, as you always do in England when you have an event planned that requires spending any time outdoors! I got dressed up in festival style clothes (no rain was going to stop me and Winnie wearing our new extra colourful maxi dress) and made massive amounts of healthy pasta salad to counteract the enormous amount of fatty meat he had purchased for the grill. Then I basically let him get on with it!

Anyway the BBQ was going well, my boy was enjoying being the MAN of the house, you know being in charge of burning the meat 🙂 – me man, me fire, me meat, me burn – and I basically carried things backwards and forwards and played being the hostess. We had a bit of rain which came after most people had arrived and the skies finally opened after the CLOUD OF DOOM finally shed its load after threatening to do so all day. It meant that around 10 adults decided to cram themselves into a very small Wendy house – amazing to say the least 🙂

So, after not drinking for around three months, I shunned alcohol all day despite people asking me again, and again, if I wanted a drink. I was even fairly careful with the fizzy pop, being aware that one sip too much would mean a whole day of Winnie flying into a paddy and blowing up with hot air in a fit of rage. But in the evening I decided to have my first sip of wine, and, guess what, I DIDN’T LIKE IT!!! For the people reading this that know me (which is probably all of you out of kindness to me) you will know that I love a good glass of Sauvignon Blanc – or two, or three (obviously I’m not an alcoholic but I may have a bottle or litre or two hidden under the sink #joke). So me not liking any wine is, quite frankly, extremely weird. I must have managed to have a drink at around 10pm, and only had about a medium glass…..I was WASTED 😦 which I suppose is great if you want a really cheap night out, but I just wanted to chill out and now I felt like I was going to fall asleep dribbling in a heap on the floor!!!

That was all I had…well, ok, that’s a lie…I may of had one tinie little gin, which I regretted the moment I put it to my lips and decided i didn’t want it (it was the gin that done her in…how true, how true). So I set about tidying up while the others played Pictionary in the living room and headed to bed having eaten only around half a sausage and a handful of pasta twirls. Everyone else was pretty drunk – I mean when I woke up the next day the house had been drunk so dry even a cactus would have died after weeks in the desert – which made it even more infuriating that I woke up feeling like I had been hit by a bus and everyone else was fine. I mean how unfair #wtf!!!

The morning after - trying to finish this really dreadful book (comment comment comment)

The morning after – trying to finish this really dreadful book (comment comment comment)

I probably felt as bad as I did the time at University that the Cheerleaders (yes queue laughter, me, Rachel, who can’t sing or put one leg in front of the other was a cheerleader) and American Footballers all put money together for me to drink a dirty pint made up of around 20, or it could even have been 30 (yes I was that popular) shots of black sambuca. Think banging headache, red-eye, hair all over the place, stomach cramps, nausea and dry mouth – it must have been a real special moment to wakeup next to me that day – mmm sexy!!!

Also I suddenly remembered that I had to finish Stephen Fry’s autobiography by the end of the day or I would break the “Read a Book a Week” part of my 101 challenges and have to start all over again. Which, I must stress, was not going to happen. So, with a gang of bleary eyed and far too enthusiastic guys in the house, I attempted to race through the remaining 200 pages of the book, which by now had become boring and tedious like all self-imposed chores (like ironing and hovering) eventually do when you are forced to do them…..

OH I FORGOT THE MOST EMBARRASSING MOMENT OF THE WHOLE WEEKEND!!! During the BBQ I had to empty Winnie a few times, and to do this I have a special (well a clothes line) peg to well peg up my dress so that I don’t make any mess. So I had done that, and around 2 hours later I needed to empty her again (which is almost a record amount of time for Winnie). I think you may have guessed it…I got to the loo and couldn’t find the peg so decided to just hold my dress out of the way…that’s when I discovered I had been sat chatting to all mine, and my bf’s friends for the past two hours with a pink peg clipped to the side of my dress!!!! Humiliating!!!

£5 bag of sweets – and they didn’t help

Later in the day, after I went back to bed for a few hours to try to sleep it off, which, well you’ll see from the pictures,  didn’t work. Me, Andy and Winnie went to Chester – errrr – Rocks!!! (I say err cause there is not much that Rocks about it I’m afraid – it is more of a pop thing, which I can’t say I mind, being a little teenie bopper – this does NOT mean that I hit Teens over the head with a mallet – at heart I love pop music)…. We saw Charlie Brown (?), some girl off the X Factor called Amelia and Lawson (some boy band I said I had never heard of but secretly love them)!!! I bought a bag of sweets to try to thicken up Winnie’s output as she had massively disagreed with the sip of alcohol and was stropping around like a moody teenager filling up with hot air and yucky poop – and it was the most expensive medicine I ever had costing me £5 for a bag of sweets. THANKS CHESTER RACECOURSE FOR NOT LETTING US TAKE OUR OWN FOOD AND DRINK!!!! ARGH!!!

I’m going to let you all into a secret now – I LOVE Jessie J!!! I don ‘t know why so many people don’t, I mean when I said I wanted to see her to some of my mates they were like “oh no…why?”, but she is fantastic. I love that she is unique and she doesn’t take any shit…I mean she doesn’t care what people think at all, does she 🙂 I got all excited when she got on stage and I started dancing like a freak!!! I even saw some parents looking at me with horror and even (you’ll laugh at this) move their children slowly away from me thinking I was a drugged-up Nutter!!! I think the people with me, Andy included, were totally humilated….there was never a better time to think “move away…we’re not with her…we don’t even know her”!!

Jessie J – “Its ok not to be Ok” good for you!!

I mean she was incredible, and all round entertainer who even said some truly from the heart things to the teenagers in the audience that I thought were just inspirational. She said it was ok to be who you wanted to be and to not worry what people thought or what people wanted you to be – that it was ok, not to be ok, and to cry and to feel like crap and to want to not do things people want you to do. I guess that struck home with me and what I am going through at the moment….I know I come across as happy-go-lucky, but behind my smile I can be seriously messed-up at times, this illness can seriously mess you up – I mean it’s draining emotionally as well as physically – but without all this pain I would never have become the person I am today for better or for worse!! Sometimes with Crohns, with a Winnie, I think it has to be ok not to be ok….I think It’s ok for us to breakdown, to feel and look like shit, to just want to curl up in a ball and cry, to hurt, to feel pain – just as long as at the end of it you pull yourself together and realise I WILL BE OK!!! I will not let this illness, this stroppy Winnie and this crap get me down…I AM STRONG, I RULE THIS ILLNESS IT DOES NOT RULE ME…

So with all that gibber jabber going round in my head Jessie (that’s how close we are….perhaps I should call her J) started singing my favourite song Who You Are. And, I am not ashamed to say actual tears started pouring down my face as she sang “tears don’t mean you’re loosing, everybodys brusing, just be true to who you are”. I think I just couldn’t believe that after all the pain, blood, poop, near death, stress and well years of not being ok with this horrible thing, with this crappy crappy illness, I was stood in a field with amazing friends, and an amazing man, and listening to a live music concert of a mega superstar telling me that ‘it’s ok not to be ok”…..when Andy asked me why I was crying I said “I am just so happy”…and that guys is the truth!

We finally got home after almost getting crushed by heaving crowds trying to get out of the tiniest exit in the world…God knows why they didn’t open the gates. I eventually was allowed through the gates by saying I was being bashed to death in the crush and had had surgery…the security guard didn’t look like he was having any of it and I almost had to show him Winnie and Oscar, but believed me when he saw how bent double I was -PHEW!

Anyway, this has been really long….so enjoy watching a really silly video of me dancing to Lawson at Chester Racecourse….the shame!!! (I looked like a freak, back away from the crazy woman kids). I call it the IBD Freedom dance!!!

 

Challenge #33 – 100 NUDE MEN, Winnie and a very windswept me


ME, WINNIE AND ‘THE BOY” WITH BEN THE NAKED MAN AT CROSBY BEACH

I’m very tired today after a hectic BIG DAY OF ADVENTURE in Liverpool 🙂 – yes I know it’s not far away but we had a lot to do and I was basically frog marched around the city and the surrounding areas clutching my tummy and giggling with excitement 🙂

Actually I was so tired that I slept for the longest uninterrupted period for months and months – possible six months – five hours straight. And, because I usually wake up and then can’t get to sleep for a couple of hours in which time I empty Winnie (my stoma bag if you are a new reader) several times of gas and undigested spinach and tablets, I woke to my bag so full it was almost bursting. Honestly two seconds more in bed or if I had rolled over onto my stomach I am sure my bag would have exploded and transformed my room into a scene from a horror movie – well one on a farm anyway!!!

Thank god I woke up in time!! Anyway, anyway, anyway – oh before we begin on the challenge have to tell you that I tried Charter and Coloplast’s Ostomiss yesterday for the first time. If you don’t know what that is (and why wouldn’t you – get with it guys) its a spray or drop that you put in your bag to make it smell lovely and not like pooey eggs – I will add that normal people have these two but many don’t use them – there called airfresheners people 🙂

Andy ‘the boy’ spots John Barnes in Liverpool one – there is me and Winnie puzzled in background – NO IDEA WHO HE IS

So we had a funny moment in Starbucks in Liverpool at the Beatles Experience. I went to the loo after joking about posing with my darling Paul (McCartney) feeling gutted that we didn’t make it on the Beatles tour because I had forgotten to book – scatter brains DOH – to empty Winnie who was trying with all her might to ruin my outfit, figure and my day – when she is full she adds 100lbs to my tiny size 6 and age 11-12yrs figure (sickening I know)!!

Anyway, anyway, anyway. As I emptied her the smell of oranges filled the cubicle….safe to say I was shocked, and horrified. I had completely forgotten that I had put two drops of tangerine scented ostomist into Winnie this morning so I wasn’t paranoid about smelling like poo!

a little insight here into my life with Crohns/ UC – I always feel and felt like I smelt of poo, I didn’t (well I hope not guys) and whenever I passed a sewer, walked past dog poo or down Sealand road where raw sewage may aswell be lying in the street on a hot day, I always thought it was me!!!

WOW CAKES MADE OF SWEETS – ROTTING TEETH WEDDING LOL

I was totally puzzled 🙂 I stood there wondering what I had eaten. You can imagine my thought process…I haven’t had any oranges, orange juice…nope…sweets…nope. Then I realised and thought WOW this stuff really works, why don’t they do Armarni Code and Hugo Boss and all perfumes – but I guess that would cost a fortune like diamond encrusted stomas. So I left the toilet and a Starbucks worker was waiting to come in. All I can say is the smile she gave me as I popped out of the loo – probably cas she thought I was a man – i have to stand up and turn towards the bowl to empty Winnie looking like I have a willy –quickly changed to a quizical look 🙂 She probably thought WHAT THE F**K HAS SHE BEEN EATING??? – she probs thought I had scoffed a load of oranges in the loo and eaten all the peel – or had a really weird problem (which to some closed minded people I do)!!!

RIGHT enough of this rambling – its time to talk about the trip.

Image

me with a giant metal man – im like Thumbelena

The idea was to do one of my stoma challenges in Liverpool yesterday 🙂 Challenge #No 33 is to do 30 of Visit Englands’ things to do before you die. There are 101 things on this list but me and Andy (my poor, understanding, and beaten down boyfriend – affectionately known as “the boy”) decided I would do 30 because of the challenge having to be finished by the time I’m 30 (clever I know!!).

Below are our choices – I think this blog and challenge will end up costing me a fortune, one should be WIN THE LOTTERY 🙂

FOOD AND DRINK (7)

1 Taste oysters in Whitstable, Kent.

2 Have a pint in England’s oldest pub, Ye Olde Trip To Jerusalem, in Nottingham, dating back to 1189.

6 Mix martinis at Dukes Bar, in St James’s, London, spiritual home of James Bond

9 Tour the Black Friars gin distillery, in Plymouth, Devon.

15 Head to the Grasmere Gingerbread Shop, in the Lake District 

17 Tour an English vineyard, in Surrey, such as Denbies Wine Estate, the biggest in the country.

Lost in Liverpool!!!! Searching for Leaf cafe – I’m sure it’s not fictional!!!

HISTORY AND HERITAGE (4)

25 Gawp at the Gothic splendour of Lincoln Cathedral, tallest building in the world for 200 years.

27 Ride the Settle-Carlisle steam train, across the Pennines and Ribblehead Viaduct, which appeared in the Harry Potter movies

38 Marvel at St Michael’s Mount, Cornwall, a tidal island crowned with a superb castle.

40 Climb the 275 steps of the tower at York Minster.

ARTS AND CULTURE (6)

48 See Blackpool illuminations.

50 Gaze out at Anthony Gormley’s sea statues at Crosby, Merseyside.

52 Take a Beatles’ Magical Mystery Tour in Liverpool.

53 Admire Banksy graffiti in Bristol.

55 Get in fancy dress for Bestival on the Isle of Wight.

58 Discover William Shakespeare’s Stratford

Me and Winnie with Liverpool’s wildlife

61 Head by boat to Farne Islands nature reserve in Northumberland.

62 Strip off at Holkham Beach, Norfolk – it’s a naturist beach.

64 See thousands of the world’s plant species at The Eden Project in Cornwall.

66 Look for dolphins and basking sharks off the Scilly Isles.

71 Spot dragonflies at Wicken Fen nature reserve, Cambridgeshire.

72 Join a bat patrol at Cheddar Gorge, Somerset.

77 Look out for snowdrops at Fountains Abbey, North Yorks.

HEALTH AND FITNESS (6)

82 Scale England’s highest peak, Scafell Pike in the Lake District.

87 Pony trek in The New Forest.

91 Canoe along the Wye Valley in Herefordshire.

92 Try swimming in Grassington, Yorkshire Dales National Park.

97 Learn the art of mountain biking, in the Lake District

101 Have a go at the annual Cheese Rolling at Cooper’s Hill, Gloucs.

If you want to do it too visit http://www.mirror.co.uk/news/uk-news/st-georges-day-2013-101-1848785

Me at Leaf tearooms in Liverpool – Amazing!! Inspired to go by The Wish List by jane Costello

Anyway the idea was to do #NO 50 and #52 in Liverpool – but it didn’t really go to plan. Watch the video below to see what happened and to hear about the challenge…Winnie played up all day but didn’t leak (I’m still holding my breath for that to happen – I’ve been far too lucky so far). We saw a tinie little scottie dog chase a swan into a lake!!! You know a swan can break your arm…imagine what it would do to this dog 🙂 but it was ballsy and had more guts than me even when the swan snarled and hissed and the owners kept yelling Tracy Tracy come back, No Tracey – I know weird name for a dog!!!

OH NOOOO – Me and Winnie don’t get to do the Mystery Beatles Tour – poor Paul

Also had trouble with the roads…Cheshire’s and merseyside’s are bloody awful!! There are holes, followed by grids, followed by speed bumps, followed by crossings everywhere!! it’s like a flaming rollercoaster ride…except not at all fun!! I was almost sobbing in pain, gripping the door handle so tight my knuckles were white and wanting to shout are we almost there yet – again and again like a little child. In fact by the time we were halfway there my stitches felt like they would split open and I wanted to go home and die….but I have never let my illness stop me doing anything before AND HELL IT WAS NOT GOING TO STOP ME NOW!!!! I was seeing those naked men if it killed me!!!

But it was worth it, I can’t believe that I have lived in Chester for three years and been to Liverpool god knows how many times and never seen the statues!!! (MENTAL) The beach was beautiful but scattered with used tampons, needles and other rubbish (people are disgusting and they judge our toilet habbits – oh the irony!!) and ruined by the great big windturbines in the background.

So 1 down 29 of those challenges to go!!! EEK!!