The Truth About Me & IBD: Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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No Appointment Necessary

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

I’ve been a bit quiet, it’s true.
There’s a really good reason for that.
Back in July I was told that I didn’t have Crohn’s disease, but rather pouchitis. The latter isn’t a whole lot of fun, but it’s preferable to Crohn’s and much more easily treatable. I was so happy at the news that if it weren’t for my crumbling spine, I would have actually jumped for joy. As it was, I sort of yelped, in a good way, and cried a bit with relief.

Three weeks ago I went to St Thomas’ hospital for my third sigmoidoscopy this year. I have had to remove my underwear so frequently recently that I am considering not even bothering to wear clothes in the first place, just a ‘one-size-fits-all-if-you’re-morbidly-obese’ hospital gown under my coat, so I’m ready for action at any given moment.

Anyway, I digress. The very nice consultant came along to peer at the screen. We were both hoping that the course of antibiotics and probiotics I’d been on since July would have cleared up the rotten mess inside my pouch and that the news would be thus: ‘It was pouchitis, let’s keep an eye on it but it’s nothing sinister, you’re free to go and do a little dance as you leave the hospital’.

It didn’t work out like that.
It’s me, remember. Stuff, in general, doesn’t work out like that for me. I never get good news; if I do it’s only because it’s wrong. I’m lured into a false sense of security for the past couple of months and then the words I don’t want to hear come tumbling out of the consultant’s face: ‘It looks like Crohn’s,’ he says, with a sympathetic expression and a pat on my hand, and lo, my whole world comes crashing down AGAIN.

It gets worse, though. Really. He said I’d be brought back into clinic within four weeks to discuss treatment. To me, four weeks was a long time already. I could have done with the following week, but what can you do but smile, say thank you and put your knickers on? I leave in a daze; mum and I go for a nice lunch on the Southbank and we sit in the sunshine and I’m at a loss for words and mum is shell-shocked. We both have a small glass of wine; it’s too small to help absorb the news. I went back on the train to the seaside, mum went back to Kent and we both delivered the news to our respective other halves; my beloved dad and adored husband, both waiting eagerly for news, thinking it would be the good stuff.

And so I went quiet. I didn’t want to talk about it. I couldn’t bear to talk about it. I still can’t. It was the worst news I could have heard; I let out a big sob in the bath the other night but that was it, it stopped as suddenly as it started and I haven’t cried a tear since, other than for a three-legged cat who needs re-homing (I want to take her but Squeaky wouldn’t have it). I always said I couldn’t deal with any more bad news; I’m not going back on that. I can’t deal with it. Then again, I don’t know what not dealing with it means. I’m doing everything on automatic pilot, panicking like hell on the inside, doing all the regular stuff with a smile on the outside. It’s the only way I know, after all.

The thing is, when shit like this happens, you at least want to be taken care of. Instead, I’m fighting St Thomas’ hospital now just as I have fought The Royal Sussex in Brighton for the past 14 years. What am I cross about now? Well, when it got to 15 days post-results and I had still not received a letter with a clinic appointment so that I might discuss treatment with the consultant, I rang the appointments line to see when it might be, imagining that their answer might be: ‘We’ve just this minute sent you a letter, it’s next week.’

Imagine my surprise when they told me that nothing was in the system. No referral had been made from the consultant’s office. Nothing. Isn’t that just incredible? I mean, words really did fail me. I was informed that the next clinic appointment would be in December, three days before Jesus’ birthday. December! I said some stuff and managed not to swear and then called the consultant’s secretary, whose phone line went to an answerphone upon which I was unable to leave a message because the mailbox was full. Really professional, right? I then spent the best part of two whole days ringing different phone numbers, from main reception to the gastro department to endoscopy to the secretary, over and over again. Everything was automated, not a single human answered. At one point the phone was answered and I got excited… but nobody spoke to me. I could hear conversations in the background akin to what it’s like to wake up from surgery a bit early. I was there, but nobody was acknowledging me. This happened EIGHT times. I suppose they just picked the phone up to stop the ringing (so sorry to bother you, my mistake!) and left it on the desk until the caller (me, on several occasions) got fed up hollering ‘HELLO? ANSWER THE PHONE!’ and hung up.

I then emailed the consultant’s secretary. I had her details from the last time I asked a question about an examination which was, of course, answered incorrectly, and almost scuppered my sigmoidoscopy. Three days after sending the email, I had still not received a response, so then I resorted to writing a letter – how ridiculous – to the consultant in which I explained my predicament. I expect he’s busy with eight million patients and three different clinics and won’t see the letter until January, if at all, but I didn’t know what else to do.

I have spent most of today dialing numbers fruitlessly. My stress levels are through the roof; this is not helping keep my inflammation levels down, so my pain is getting worse by the day.

There is something fundamentally wrong with a system which does not allow a patient to speak to a human being; a system which allows for patients requiring urgent care for serious conditions to be forgotten, a system which only serves to cause more stress and upset to patients who are already dealing with dreadful conditions on a daily basis. I can’t be the only patient that this happens to; how is it that there is nobody held accountable for these mistakes, these lapses of concentration whereby a piece of paper doesn’t get to the desk it should get to, whereby someone on the other end of the phone doesn’t answer their phone, and doesn’t allow for a patient to leave a message.

I’ve since emailed the IBD helpline on the advice of a kind chap on Twitter. I had never been given an IBD helpline number in the first place, or I might have tried that. Let’s see if they respond; I live in hope.

I am sick of being sick, there’s no doubt about that, but I’m even more sick of being ignored, being left to fend for myself and wonder if I will ever be seen by the one person who might be able to help me. If I could afford private healthcare, I’d have signed up long ago. All it takes is for one person to make the appointment they’ve been asked to make, to answer a phone, to say, ‘I can help you, hold on’ rather than ‘I can’t do that, you need to speak to the secretary’ and then give me a telephone number which may as well be the number of the local Chinese takeaway; at least I’d get something out of ringing that. Chicken chow-mein and some prawn crackers, maybe.

I’m saddened, I’m appalled and most of all, I’m exhausted. I’m left with no option other than to make the trip from Brighton to London to actually stand in clinic and shout ‘GIVE ME A F*CKING APPOINTMENT NOW!’ until somebody either a) calls the police or b) calls the consultant. What else can I do, short of throwing bricks at the window or driving a lorry through the front door? Actually, the last one is looking more appealing by the minute.

Answers on a postcard, if you will.

UPDATE: Got an appointment tomorrow (Monday), thanks to the person at the other end of the IBD Helpline. I’m taking the lorry back in a minute…

Christmas, Sunsets, Donkeys & Dinners

Behold, there’s still time to buy my book as a Christmas present if you can’t be bothered to go to the stupid shops! And don’t forget, if you want the paperback version, just go to ‘Books’ in Amazon and type in the title. Bingo!
Mostly Cloudy, With Some Bright Spells

Christmas is a funny time for me, in the head. Twelve years ago I was fighting for my life, and my sanity, in a plastic-coated bed in a boiling hot, stinking, noisy ward at the Royal Sussex County Hospital in Brighton. I had just had my large bowel removed; not for fun, but to save my life. I awoke from surgery with a stomach so battered, bruised and bloodied that I gasped; think of a week-old corpse dragged from a lake Law & Order: Special Victims Unit and you’ll have an idea of how bad it was. I hadn’t slept a wink for days on end; I was so ill, in fact, that my parents didn’t think they’d be bringing me out of there alive. Once I was moved to a private room, on account of me going completely nuts, I began to get better, but it was a very slow process. I remember every moment as clearly as if it was yesterday.

At this time of year, every year, I always feel very emotional as so many things remind me of that terrible time, but one of those reminders is also my reason for coming to Brighton in the first place: Brighton Pier. If I stood at the window of my hospital room I could see it so clearly it was like staring at a film poster. I would watch the light change around it; the sun coming up and the sun going down. I would see tangerine skies with dashes of pink; the lights reflecting in the shimmering sea. Those moments made me feel I had something to fight for: I wanted to get out and see it for real, not from a window.

Last week, I had an appointment at the hospital. I took my camera, because it was a bright, clear day. What I captured – and I’m clueless with photography, I’m the first to admit that – is awesome, and that’s a word I’ve only previously used to describe red pandas and former Tottenham winger Gareth Bale, so I don’t say it lightly. All those feelings came flooding back as I stood on the seafront, camera in hand, in awe (hence the correct use of ‘awesome’) at what was happening in front of me. The landscape changed so much in 30 minutes I could barely keep up with it. It made me cry, just a little, but I couldn’t tell you what I was crying for. I can share the photos with you, though.

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So. A week until Christmas, and Jesus’ fake birthday. A time for reflection, for thanks, for counting your blessings. Aside from sunsets, and in no particular order, here’s what I’m glad I made it out of hospital for:

PARENTS
I have the most wonderful parents. I don’t mean to brag, but they really are mental amazing. They drive the hour or so from their house laden with homemade cakes, pies and macaroni cheese (mine and Pantouf’s favourite comfort food). They bring flowers, wine and cuttings from the newspaper which relate to my health issues (this is very sweet). They always tell me I look lovely, they always tell me the food I cook is wonderful (to be fair, it is) and mum will sew a button on something for me (I can sew about as well as I can discover new planets) while dad changes light bulbs or moves heavy plants around the garden at my instruction. I’m not lucky with a lot of things, but when it comes to parents, I did alright.

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My dad looks like Ron Burgundy. I am fat!

I didn’t do too badly when it comes to the in-laws, either. Gautier’s dad, Victor, is a great hulk of a man who decorated our house, cooks 6 kilo steaks and kisses me on the head every time he walks past me. Gautier’s mum, Monique, and her husband, Christophe, take us somewhere nice in France for a week every summer (what with them being French). This summer we went to Bordeaux. Here’s proof of  the steak and the father-in-law. I am nursing massive mosquito bites but looking forward to dinner.

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Just a light snack.

DOGS
Yes. Because I can’t have my own, I am thankful for other people’s. Cookie lives two doors up. We go for walks on the green opposite our house, followed by a massive cuddle on his sofa. There’s also Jackson, an idiotic Shih Tzu who lives on the other side of town. I hang out with him at the beach and also cuddle him on the sofa.

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This is Jackson. He’s a lovely little idiot.

HANDS-FREE KITS
Yeah, I got one. The pain and numbness in my left arm is still bothering me. ‘If all I was put on this earth to do is tell daft stories, what am I to do?’ I thought. A lot. So, now I don’t need to worry. I’m actually typing this WITHOUT TYPING. It’s true. I’m talking into a microphone which is attached to my head, and words are coming out on screen as I say them. It’s MAGIC. I got mine here, from the nicest, most helpful bunch of people you’ll ever deal with, and that’s a fact:

http://www.hands-free.co.uk/

THE NHS
Yep, really. Over the past couple of years I’ve seen a rheumatologist who actually listens to me and does stuff, like orders MRI scans and sends me to a neurologist when weird stuff starts going on. I’ve got a great team of GPs at my local surgery, all three of which continue to do their best to help me manage my pain, whether it’s down to a blocked intestine or axial spondyloarthritis, scoliosis or fibromyalgia. They are all super great, and I only wish I had been under their care when I first moved to Brighton; I have no doubt I would still have my lovely, massive colon if I had.

COCKTAILS
Best medication ever. This past fortnight I’ve managed to have an actual social life, believe it or not. I’ve really had to push myself to do it, because it’s not like I haven’t been in pain, and it’s hard to get dolled up, get a bus and walk about in town and sit on normal chairs. But I did it. Last weekend Bo and I went to The Grand Hotel for a Bellini. We wore heels, which meant we had to take a cab. I almost had a heart attack at the thought of paying someone to drive us home (I’d sooner drag myself home on my elbows like a marine if my hips hurt than pay for a taxi) but we did it. ‘Don’t think about it,’ Bo kept saying, ‘just let it go, it’s Christmas!’ We behaved like ladies, acting dainty and marvelling at the complimentary bar snacks. It was well good. They even have armchairs. So cool! This week I had cocktails with Kelly. She is 23. I am 41. I like hanging about with youngsters because I am very immature. So there.

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Cocktails with Kelly, and it was happy hour ALL NIGHT. It makes no sense, of course, but we weren’t complaining.

FOOD
Yeah, food. Good food. Gautier and I only go out for dinner about twice a year. It’s true. Unless you count Pizza Express, which I’m not going to, even if I do LOVE IT. I love cooking. Next week the French in-laws descend upon us; I am planning a Christmas Eve and Christmas Day menu like nothing before; three courses, both days. After that, mum and dad are coming down for New Year’s Eve and I’ll be doing another three courses that night. My head is spinning with dessert ideas – tiramisu, Irish coffee trifle, cherry panna cotta, chocolate torte – and I may even do drawings so I can plate up a bit like they do on Masterchef. That’s the other thing I’m thankful for – Masterchef: The Professionals. Best programme ever! Michel Roux Jnr, if you’re reading this, please invite me to dinner at La Gavroche and kiss me on the cheek.

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What’s under the cloche? I reckon it’s a packet of Wotsits.

1950s NOVELTY-PRINT CLOTHES
Yes. Really old clothes made in Mexico with mad prints on them, especially if the prints are of shells, seahorses, lobsters, donkeys or dogs. This year I’ve acquired an ‘under the sea’ Mexican skirt, a Mexican donkey skirt and a Mexican donkey shirt. Look, there’s the skirt.

The 1950s donkey skirt in all its Mexican glory. Brills!
The 1950s donkey skirt in all its Mexican glory. Brills!

LLAMAS, ALPACAS, DONKEYS, GOATS & BEACHES
I love going to visit Llama Tom and his mates at Ashdown Forest Llama Park. Gautier and I also discovered some crazy nice goats and donkeys at Blackberry Farm in Lewes. Animal days out are THE NUTS. Coming a close second to animal days out are ‘mental view days out’, which include this one at Beachy Head, where I actually almost fell off the edge of the cliff. Well done.

Not too shabby
Be a bit careful

CAMERAS
Photography is going to be my proper hobby next year. I’m going to go out armed with my SLR camera and my Lomography Diana Mini retro camera thing and take a lot of photos in Brighton and learn how to use Adobe Lightroom.
I hope I don’t suck at it.

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This is what photos with a Diani Mini camera look like.
Super grainy!

CAROUSELS
Yeah, carousels. Can’t go past one without having a go. Love them.

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‘Hello, I’m mentally ill!’

CATS
This is our one. Nice, huh?

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‘Fetch me my slippers!’

TV & MOVIES
I’d like to give thanks to the creators of Boardwalk Empire and Breaking Bad, which is best thing I’ve ever seen EVER. If you haven’t watched it, you’re a bit of an idiot, because it’s flipping insane. Also Weeds, that’s a good one. As far as British TV goes, I can’t bear most of it. I’ve already mentioned Masterchef; the only other thing Gautier and I watch is Saturday Kitchen and Top Gear. Oh my God, Top Gear. It’s worth the licence fee just for that. Genius. As for movies, we watch a lot, because we don’t really go out, because I’m not very good at going out. There’s nothing better than a grim horror on a Saturday night with all the lights turned off. Trouble is, when I need the loo Gautier has to go up the stairs in front of me and switch all the lights on because I’m too scared to go up on my own. I’m not even joking. I am a right baby.

Right. All the Christmas presents are wrapped. I’ve bought Gautier a fancy boning knife and myself a machete thing which I’m quite sure is going to take my fingers off the first time I use it. I am considering wearing thimbles. Seriously. Last week I cut my forefinger with the bread knife, went upstairs, got a plaster, came back down, started again and cut my middle finger, and repeated the first bit until Gautier said, ‘Leave it!’ Gautier has bought me a pasta maker, but I bet I’m not even strong enough to wind the pasta through it. Come to think of it, how am I going to knead it? Doh!

I’d just like to wish each and every one of you a super, hopefully-a-bit-pain-free Christmas and a Happy New Year, wherever you are and however you’re celebrating (if indeed that’s what you do. Got to be politically correct or I might get arrested). Here’s to talcum powder and novelty socks, may you be inundated with both!

Juliette xxx

Stuff People Search For On The Internet: Part 1

Click here to download my little book:
Mostly Cloudy, With Some Bright Spells

I thought I’d delete the troll comments from my account today. I have decided that the best way to deal with these unpleasant, vindictive mentalists – or whatever people with nothing to do but virtually punch other people in the face all day are called – is to ignore them. That’s quite hard for me, because I’m rubbish at ignoring stuff, but it’s obvious that they’re trying to make me cry into a hankie or, with any luck, hang myself. I’m not about to do either. From car alarms to people eating on the train, dogs being yanked on the lead by their stupid owners or white kids talking as if they were brought up by Bob Marley, I am rubbish at letting stuff which annoys me go over my head. Well, I used to be, but now I’ve decided to get better at it.

To a point. Maybe not the dogs being yanked on the lead by their stupid owners. Maybe not the car alarms. Maybe not the people eating on the train and actually, definitely not the white kids pretending to be Jamaican, but the trolling shizz, that ends here. It’s one button, and it’s called ‘delete’, and I need to start using it. If somebody came up to me in the park and gave me a mouthful of abuse and acted all mental, I’d kick them in the nuts or punch them in the face. Both, possibly, given half the chance and depending on whether or not they had nuts. As in body nuts, not the kind which grow on trees.

On the interweb, or whatever it’s called, you can’t do that. Replying to them is a waste of time (they hate what I read already, so they’re just going to hate me even more), and I could clean out a kitchen cupboard rather than type a response, which would be a far better use of my time and energy. Other things I could do which would be more beneficial include staring into space, drawing a face on each kneecap, watering my houseplants or taking the newspapers to the recycling bin round the corner.

Anyway, this isn’t a post about trolls, it’s a post about internet stuff. If it were about trolls, it’d be about these kind, not the human mentalistic kind:

A nice troll, yesterday
A nice troll, yesterday

Anyway, while I was sighing and blowing raspberries and pressing delete (I am an excellent multi-tasker) I noticed a new stats counter thing at the bottom of the page. It was headed ‘Search Engine Terms’. I had no idea what that means. I’m good at making sandwiches, not good at understanding internet jargon. Gautier explained it to me: ‘It’s when people search for a phrase or words which lead them to your blog’. It made fascinating reading. So fascinating, in fact, that I thought you might like to see it.

In case you’re pushed for time, the highlights for me have to be ‘a monkey sweeping the floor’, ‘male inject butt shower’, ‘ecstasy tabs double cherries’ (please don’t let the police be behind that one) and ‘asda receipt ripped receipt’. Knock yourselves out, I’ll be posting more of these!

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