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.

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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”.

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A decade in the making – finally being diagnosed with arthritis


The first time my hands froze into a claw-like grip, curling up like the crazed witch in

Mugs can be too heavy to hold when my hands are bad

Mugs can be too heavy to hold when my hands are bad

Walt Disney’s Snow White as she gives her the poisoned apple, I thought I was having a stroke. I was sitting in a GCSE maths exam scratching my head as I tried to work out some crazy mathematical equation and suddenly my hand just wouldn’t move. I tried putting down my fountain pen, but my hand wouldn’t let go.  It was suddenly like my fingers had been glued to the shaft of the special pen my parents had bought me for school that year. I remember looking down in confusion and seeing that my hands had gone a skeletal shade of white. I remember prodding the death-grip hand with my normal fleshy coloured hand and the rising panic as my fingers started turning black as the blood failed to come back into my hand as I prodded and prodded.

Shockingly I didn’t fail that GCSE. I managed to battle through, but not until I had painstakingly prized my fingers apart, slowly moving my stiff joints until they were flat on the desk next to my incomplete test paper. It seemed to take a life time as the exam clock ticked slowly away and my future seemed to be literally slipping through my wax-looking fingers. I remember thinking that everything would be ok as long as I could finish the exam – and as long as my fingers didn’t snap off!

I was just 15-years-old.

My hand - when it broke two years ago and osteoporosis was discovered

My hand – when it broke two years ago and osteoporosis was discovered

Over the years this joint stiffness intensified until there were days when I literally felt like a tin man needing oil just to move. Every bone, joint and muscle felt like it was made of stone. I creaked when I moved, and when stretching in certain ways my bones made a sickening snapping sound.

Some nights, after gripping a pen all day or spending hours shading and sketching for my GCSE and A Level Art coursework, my hands would freeze solid when I was trying to eat. My dad would have to prize my fingers one by one off my knife and fork, pulling my joints painfully back into position. I still have to do that now. But back then it all seemed so much more frightening.

My hands went through their most challenging few months when I was learning shorthand for my journalism course. I would spend hours every day scribbling the hieroglyphic like symbols, forcing my hand to move faster and faster across the page in an attempt to get up to the required 100 wpm. It was agony. In some of the exams I had practiced so much before the test that my hand simply wouldn’t move across the page. Every second was agony. Of a night after hours of practicing i would lie with my hot water bottle pressed against my wrists trying to ease the pain shooting through my joints…I often dropped wine glasses, pens, handbags. It still happens now after long days in court, but I guess I’ve just got used to it.

Learning shorthand was like boot camp for journalists…survival of the fittest, but it was torture for my hands, and the more they stopped me progressing the more frustrated and depressed I became.

Me on the PA course for Journalists - best 17 weeks of my life but most taxing on my hands

Me on the PA course for Journalists – best 17 weeks of my life but most taxing on my hands

Over the years the pain that started in my right hand and wrists has spread to most of the other joints in my body. I often lie awake at night due to the pain in my lower back, my knees sometimes give way and my blood in my wrists sometimes feel like its burning as it travels through my veins. My shoulders are the worse, they always feel like they’re dislocating, and I can’t undo my bra from behind.

Despite all these obvious joint problems, and despite complaining about them to my gastro consultant, IBD nurse and surgical team, I have never had any treatment for my joints. I have always been fobbed off with the bog standard “It’s all related to your Crohns/Colitis” reply to my pleas for help. This has been going on for almost a decade.

Last week I finally got an appointment to see the Rheumatologist. I was astounded when I opened the letter, if anyone had been watching they must have thought I’d won an amazing prize from the delighted look of astonishment on my face. I went along to the appointment and after being stretched sideways, backwards and forwards by a very lovely consultant I was told I had Rheumatoid Arthritis – possibly induced by a decade of steroid treatments combined with the side effects of my Crohns/Colitis.

I would have punched the air if I didn’t have such bad joints. It was a ‘I told you I was ill’ moment that would have made Spike Milligan proud.

I already have osteoporosis, and now I almost officially have arthritis. I say almost as I have to get some tests done before anything can be certain, including a scan of my back, bloods..etc. But I am finally getting the treatment I need, and amazingly enough I have been signed up to get physiotherapy – at last.

IMAG0310I guess only time will tell how much damage the doctors ignoring my symptoms for the past 10 years has done, but for now I’m just happy that someone has finally listened to me. I’m hoping that the injections (humira? – which I have already been there done that) will not only mean I can finally open a bottle of pop without knocking on a neighbour’s door for help, but control my IBD which is on the verge of an especially nasty flare at the moment.

Meanwhile if any of you have any advice for things I can do to ease the constant joint ache and pain please let me know.

A very problematic fistula


After a couple of days of really bad pain, tenderness and a few pretty disgusting leaks, I

OUCH!!! My mucus fistula looking very angry without its bag on

OUCH!!! My mucus fistula looking very angry without its bag on

finally gave in yesterday and rang the stoma nurse about my fistula. I guess I just couldn’t take it anymore. The trigger was when I went to the toilet at work and I noticed that the blood had come back…it took everything for me not to just breakdown there and then.

So according to the registrar, a very bemused looking doctor the stoma nurse dragged kicking a screaming into the clinic to look at my very temperamental fistula, I am “on the verge of something big”! Sounds exciting right? Well what he meant is that the horrific symptoms are starting to return, only this time as I only have a tiny bit of colon the agonising and crippling pain from before is more like a dull throb and twinges like someone is pulling at my bowel with a pair of tweezers. He means that I am in all probability on the very edge of a major flare of my Crohn’s/UC…and that it is time to nip it in the bud before it spirals out of control and I end up flat on my back squirming around in agony again.

This is all because they didn’t take my whole bowel out last time I was on the operating table. There are a lot of reasons for this, none of which i can really explain, but the long and short of it is that I have a mucus fistula, and that combined with my remaining colon (still full of Crohn’s/colitis) is what could send me hurtling back into my illness again…all this would have been solved if he had just whipped it all out at once..typical man!

My mucus fistula formed after my supposedly ‘perfectly healing scar’ exploded one night on the hospital ward sending what appeared to be the entire contents of my stomach pouring onto the floor. I have been through a lot of scary stuff in my life due to my illness, but I have to say that my stomach tearing open has to be one of the most horrifying moments so far – I would put it up there with the first time I blacked out and hit my head against a sink as the entire contents of my body appeared to drop into the bottom of the toilet one afternoon. I remember just standing in the bathroom screaming as this luke warm brown liquid cascaded from my stomach, reaching out in shock to press the emergency call button, screaming my stomach is falling out in a wild panic while the nurses swarmed around me trying to calm me town, telling me ‘it’s perfectly normal dear, you’ll be ok’….in what world is your stomach splitting open normal??? Oh yes, in the world of IBD and abdominal surgery, that’s right!

Anyway, since my surgery I have had a few hiccups with my hole in my stomach. It’s no bigger than a thumb print, but boy can it cause havoc when it wants to. According to my surgeon it formed when the stitches holding my remaining rectal stump (the remaining bit of colon they left in when they removed the majority of my large bowel) came undone and, not wanting to feel left out, the remaining bowel squirmed its way to the surface so it could form another stoma. I like to think of it as my second stoma, and although it is a pain and not a pretty sight if it hadn’t burst through the surface, like a little worm peeking out of the soil, the mucus in my bowel would have discharge into my body causing a world of problems and making me incredibly ill.

So I guess it’s the lesser of two evils.

But I hate my mucus fistula. Having it means I have a second stoma bag. Ok, its only a baby sized one, but I really didn’t sign up for having two bags, one has been hard enough to accept. I have embraced Winnie, and, although I wouldn’t say I love her, I’m never disgusted or angry about having my ileostomy. Winnie is simply part of me and without her I would still be incredibly ill and in a heck of a lot of pain. But no one ever warned me that I might end up with two bags, and, and this has been the hardest thing to stomach, that I could have to put up with it for the rest of my life if I don’t have a second lot of surgery.

Anyway I’m stuck with it for another six months when I will finally be fully colonless. For now I’m putting up with my mucus fistula, the only problem is it’s not making life easy. Over the last few weeks all the side effects that seemed to miraculous vanish the morning after the operation have started to slowly return, and my fistula has started generating more and more mucus filling the little bag in record time and causing some rather horrific leaks that have ruined more than a couple of pairs of my favourite PJs. The stuff it generates is pretty horrible, its like a sicky brown colour, I suppose a bit like baby puke…NICE! And the smell, urgh, it’s so pungent. The worse thing is it comes out both ends, which is something very surprising when you’ve had your bowel removed, it may sound silly but you would think you wouldn’t be able to poop anymore, but this stuff just won’t stay in, there’s no control, it just kinda floods out.

The worse thing is the pain as the stuff shoots out of the tiny hole in my fistula. It literally spits it and the pain, if I happen to be walking, stops me in my tracks. It feels like I’ve been kicked in the stomach and leaves me breathless. It also incredibly tender and even if the ID card I wear at word lightly touches it I want to scream in frustration…seat belts are an especially horrible experience. But compared to before it is like a minor headache, like a tiny mosquito bite when an elephant is bouncing on your stomach, I can cope with it, but not if it means getting ill again.

I refuse to get ill again…I’ve been ill for as long as I can remember, and for the first time in my life I was starting to get used to not waking up and going to bed in pain. That can’t return, and even though that means I’m going to have to spend the next 6 months shooting all sorts of things up my sore backside I’ll do it if it means I never have to feel that pain again.

 

Surviving Crohn’s a Review: The Foul Bowel by John Bradley


Living with IBD is no laughing matter. It’s like serving a life sentence, but while

honest, candid and hilarious a must read for those with IBD

honest, candid and hilarious a must read for those with IBD

murderers and pedophiles can get off early for good behaviour, for those unfortunate enough to be issued with the piece of paper branded IBD along with the complimentary hospital tag, life really does mean life.

Over the years I have been through some truly humiliating experiences and many of them have left me shaken and in floods of tears. The pain, the accidents and the true horror when you first realise that you’re going to have to live with this horrific condition for the rest of your life, would be enough to reduce even the most hard man about town into a blithering wreck.

If someone told me that one day I would be looking back and laughing, laughing so hard that my ileostomy scar split, at all the times when I stuck my bare bum in the air like a red bottomed baboon and let some student doctor pump gallons of air up my arse, or at the first time I tried to administer my own suppository and got it painfully wrong, I guess I would have laughed in their face.  But while reading The Foul Bowel by John Bradley that’s exactly what I did.

I’ve seen a lot of comedians over the years, I’ve seen a lot of funny things, but I can’t say that a book has ever made me laugh that much. Sometimes it felt wrong to be laughing at something that has caused me so much humiliation and pain over the years, to laugh at the appalling things this condition has put me through and to marvel at the total incompetence of the doctors, surgeons and dietitians I have encountered over the years. Scrap that…it was just what I needed. Laughter really is the best medicine, and the way John described his barium meal experiences left me creased over in laughter at something I still consider to be one of the most uncomfortable and humiliating moments of my young life.

The subtitle of this book is 101 ways to survive and thrive with Crohn’s Disease, and in a way it is a self-help manual. I didn’t agree with everything John had to say, I didn’t agree with everything he said about wards verse private rooms, as I have had some hilarious and terrifying experiences on the NHS’s crazy communal wards, but I do agree that at least you can watch the world or the madness go by. The candid way that he talked about his work, coping with the disease, having a love life and basically surviving was refreshing, and it made a lovely change to read about the illness from a man’s point of view, something that rarely happens even in this newish era of blogging and the world-wide web.

I read the book on my kindle in coffee shops, hospital waiting rooms and in bed while recovering from my ileostomy op. People must have thought I was reading Jennifer Saunders’ autobiography or some new hilarious comedy from the way I was gripping my stomach and writhing around in pain as the fits of laughter tore at my stitches threatening to tear open my stomach and expose my insides.

This book should be in every gastro ward. No, I’ll go further than that. This book should be given to every single patient when they are first diagnosed with IBD. I guess if I’d read this all those years ago when I was first told I would have to live with an incurable illness for the rest of my life I would have realised I would be able to cope. I guess I would still have realised that having Crohn’s or Colitis is one hell of a rollercoaster, and that my life was going to be one massive battle, but I would have been able to say hey, this guy went through all that and he had time to write a book, he’s doing ok for himself. I guess what I’m trying to say is that if I’d had this at the time all of that was happening I would have been better prepared and it would all have seemed just a little bit less scary.

“Having Crohn’s Disease is like being transported back to being a helpless infant. People talk at you using an incomprehensible language. No one seeks, welcomes or values your opinion. Mummy, in the guise of the medical profession, most definitely knows what’s best for you. Your food is bland, mushy and generally appalling. Your poop becomes an object of fascination for others”., John Bradley, opening of the Foul Bowel.  

Hats off to you John for being so honest.

http://www.foulbowel.com

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.

A grand day out! Sweltering heat, massive hills, art & giant marshmallows


Despite the sweltering heat and glorious sunshine, on Friday me and my amazing

Exhausted, sweating like pigs, but happy

Exhausted, sweating like pigs, but happy

boyfriend Andy (and of course who can forget Winnie) jumped in the car and submitted ourselves to over three hours of swerving lunatic drivers, scar-tearingly bumpy roads, and squinting to see digital road maps due to the bright sunlight as we drove to Bristol – all in the name of street art, and, well so that I could do one of my challenges.

The car journey, which as usual saw me scoff my own weight in haribo sweets (well, if you can’t do it on a car journey when can you?), was something of an achievement for me. After more than a decade of Crohns/Colitis, I am still getting used to the idea of not having to race to the toilet every five minutes doubled over in crippling pain. Of course, even though I now have Winnie I still have my moments, but compared to the urgency and, ahem, accidents, my toilet habits are a breezy walk in the park these days. Only 10-weeks-ago (before my surgery) the idea of even the shortest of car journeys sent me into a flurry of minor nervous breakdowns. For more than a decade of my life I would go to the loo at least five times before getting in the car, bob around on the doorstep impatiently telling people to “hurry up before I need the loo again”, and once in the car I lived in constant fear of traffic jams, as they meant it could be hours before the next service station and chance for me to go to the loo. Honestly my fear was so severe that break lights activating ahead on a busy motorway, or the word ‘diversion’, or even ‘next services in 30 miles’, sent my blood pressure through the roof…I would start sweating and, usually the moment such a delay occurred my evil disease would kick off and naturally I would need the toilet at the one time that there was no way I could go!!

Traffic lights used to send me into cold sweats, now I just sit back and enjoy the ride

Traffic lights used to send me into cold sweats, now I just sit back and enjoy the ride

So, understandably my relationship with travelling, especially in cars (don’t get me started on my humiliating experiences with public transport) is one that I associate with pain, fear and panic. So I was very surprised that despite the unprecedented heat, and the fact that Winnie was kicking off, and Oscar (remaining colon) was spitting mucus out of my stomach, we had an event free and rather pleasant car journey. In the three-hour journey we only stopped once, and that was more so I could empty my weak bladder than because Winnie was full – though I have to admit that, probably to the surprise of other nosey passengers staring in through the car window, I did keep checking Winnie for status updates every half an hour – better safe than sorry.

Ok, so what exactly had we driven all the way to Bristol for? 

As part of challenge #No33 I have to visit 30 things on the Visit England 101 things to see in England before you die, and search for Banksy’s art in Bristol is one of the 30 challenges I chose. So Andy very kindly booked us a hotel and agreed to drive us to Bristol for a weekend of traipsing around a city looking for art – something that isn’t really up his street (he’s more sport, I’m more culture – that’s the truth).

I have to say that I was over-the-topily excited about this trip. The night before I had spent hours looking on the computer at things we could do when we got to this city, which by the way sounded like a cultural Mecca. I can’t even begin to describe my excitement when I discovered that we would not only be able to search for the famous Banksy works, but scattered around the city were 80 giant Gromit statues, which had been decorated by famous designers, illustrators, musicians, and authors. Everyone from Michael Buble (yes I know, I have no idea how to get the accent over his name) to Quentin Blake, and the creator of Where’s Wally – I was like a little kid in a massive sweet shop, I even downloaded the special Gromit app (such a child #lol) – in the end we only saw about 10 but ah well c’est la vie!

Me & one of the 80 Gromits

Me & one of the 80 Gromits

So after checking into the hotel (we got an excellent last-minute deal on the Doubletree – we’re not that posh!) and a quick change later, me, Andy and Winnie hit the streets of Bristol with one aim – to find something to eat. We quickly stumbled across our first Gromit, which was just outside the hotel, before heading down to the Quayside where the whole of Bristol appeared to have gathered for a drink. I won’t get into it, but after waiting for rather a long time outside a well-known chain Italian restaurant and being ignored, we decided to spread our wings and explore further afield, which with Winnie behaving herself was not so much of an issue, or so I thought until we climbed the steepest hill in the world to get to Cafe Rouge.

On the way we spotted our first Banksy – hurrah! So a couple of pictures later and we kept

The first one!! SHOCK and RELIEF!!

The first one!! SHOCK and RELIEF!!

climbing past the rows of nightclubs until we got to the restaurant, by which time we were both sweating buckets and gasping for a drink – you could say we had earned our dinner! (we went to Cafe Rouge because I had a voucher and all 101 of these adventures combined is not going to be cheap so best to scrimp and save where possible) It was a lovely – well the same as any other Cafe Rouge – restaurant, which had an amazing view of Bristol University, which we both mistakenly mistook for the Cathedral until we explored later that night. The only downside was the gang of over-excited and tipsy graduates who were squealing their heads off, singing old kid TV theme tunes, and kept shouting loudly in Spanish – which made me think they had been language students. By the time we left I had a very bad headache, but had enjoyed my first salad post surgery 🙂 and Andy had indulged in his  ‘never let him down’ dish of duck.

At the restaurant - we only had one drink each - i promise!

At the restaurant – we only had one drink each – i promise!

Even though both of us only had one drunk we were a little tipsy and exhausted and decided to call it a night (we’re WILD), but on the way back to the hotel we stumbled across a frozen yogurt take-out that was still open at 10PM WOW!! And it did lactose free frozen yogurt, we just couldn’t say no to that!!

Anyway the next day I might have had a little strop after not being able to find a Starbucks immediately to satisfy my morning coffee urges…and poor Andy had to put up with my having full-blown paddies as we traipsed up that bloody hill again to get a frapaccino in the now unbearable heat. I was a little happier when I’d got my coffee, I think the ice and the caffeine combined with a little bit of air conditioning really helped to cool my rapidly spiralling out of control totally over-the-top temper, so then we could get on with what we had come to see – the Banksy street art.

The only problem is, finding a Banksy in Bristol is like finding your keys when you’ve lost

Yep another one...nightmare to find

Yep another one…nightmare to find

them, you can’t find them when you want to, but you stumble across them unexpectedly when you’re no longer searching for them. We found that first one quite by chance, and the second one (the girl with the balloons) when we turned the corner after our meal. But after that it became much much more difficult. Traipsing through Bristol, up and down the steepest hills I have tried to tackle since my surgery in temperatures reaching 30c was not easy at all. We explored the roughest parts of the city, where drunk people gathered in the streets, and went up alleyways stinking of spray paint as Andy’s special Iphone ap directed us into possible drug dens in search of the best street art the city had to offer.

Three hours later, exhausted, sunburnt, dripping with sweat and feeling like I had just run a marathon with lead weights attached to the backs of my knees, I gave in and decided I simply couldn’t search any longer. My legs felt like they were going to give way from under me and I was sweating from places I didn’t know existed. As we collapsed in the park under the shade next to some teenagers who were smoking some very funky smelling weed, we took our shoes off and gulped down the water, before reflecting that despite the temperamental

WHOOP another Banksy

WHOOP another Banksy

iPhone ap we had done rather well (even if one of the Banksy’s had disappeared by the time we had trudged miles to get there (some idiot painted over it no doubt)), and had not only seen some of the most WOW street art in the UK but also ventured where few tourists had ever dared to venture before.

Winnie was surprisingly well-behaved the entire day. I think, like everything, in the heat she just gave up, decided there was no point and declared the day a stoma holiday! So we sat and had some free fruit in the park and enjoyed lapping in the Pride festival atmosphere. I had never been to Pride before and it was an incredible event to experience, with the hot weather and music blasting people where scattered all over the lawns and grassy embankments just kicking back, enjoying beer and basically enjoying life.

I had really wanted to watch blast-from-the-past boy band Blue, but as we joined the

Another Banksy - squee!

Another Banksy – squee!

packed crowds I realised not only was I not going to be able to see them but Winnie was likely to get crushed in the process. Now I like Blue’s music but not enough to end up with a dented stoma! Anyway my decision not to see them perform was sealed by the band not coming on stage at the correct time, we waited 20 minutes and then with the onset of heat exhaustion decided not to ruin an amazing day by ending up in a&e and decided to call it a day.

We made it back home to Andy’s country home at around 8.30pm after stopping for supplies, once home we grabbed showers, tucked into a

AMAZING ART

AMAZING ART

yummy tea, and passed out. I woke the next day to my muscles screaming like they had been put through one of those Iron-man challenges and spent the rest of the day walking like a Cowboy (people must have thought I had had far too much fun!). So due to my exhaustion we spent most of the day sunning ourselves in the garden, Winnie had a few moments, but after being well-behaved the day before I forgave her. I even treated her to giant toasted American marshmallows on the BBQ later that night – MMM the best medication EVER!!!

So if you’re looking for a good weekend of exploring and you love art, head to Bristol. It was nothing like what I expected…it was a fusion of the old with the new, the traditional with the modern, obscure and at times terrible and verging on vandalism graffiti. It was one of the best and most random weekend’s me and Andy have had, and the best me and Winnie have spent together. So give it a go – a word of advice though, don’t go during a heat wave and expect to get much done!

The giant marshmallows - such a treat MMMM

The giant marshmallows – such a treat MMMM

the giant marshmallow have made me soooo happy

the giant marshmallow have made me soooo happy

If you didn’t see it on yesterday’s post below is the slide show of pics of the trip to Bristol. ENJOY!!