C’est La Vie

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

To buy a signed copy leave me a comment at the foot of the page; I have a box of them at home and make a little more selling directly than I do on Amazon. I thank you!

I’m writing this from France. I’m sitting at the kitchen table at Gautier’s mum’s house with a cup of coffee, looking out of the beautiful big window watching two pigeons kiss each other at the top of the weeping willow tree in their garden. Gautier and I have just returned from a little walk, and on our way past the garden noticed a half-built bird’s nest in the tree at the front of the house. I wanted to help build the nest, I said.

‘How?’ asked Gautier, his eyebrows raised.
‘I can collect some twigs and put them at the bottom of the tree for him,’ I offered.
He pointed at the grass that was covered in twigs and said, ‘Er, I think he can manage, monkey.’
‘Maybe, but it’s cold and I could just help a bit,’ I whined.
‘You are already not well!’ he scolded. ‘You don’t need to be outside in the freezing cold picking up twigs!’

He was probably right, but still. Later that night Gautier went outside for a cigarette (ugh, I know) and announced that said nest had a dove atop it. A dove! How lovely is that? I haven’t seen any boring birds here; just magpies and blue tits and now this lovely dove.

The lovely dove from above

That was today. Yesterday was just as exciting, and I’m not even being sarcastic. Monique (Gautier’s mum) drove us to the giant fruit and vegetable market thing which houses leeks the size of hockey sticks and oranges as big as a baby’s head. They also had a pick ‘n’ mix counter, so Gautier and I snuck off to that. I then ate some sweets in the back of the car on the way to the next stop (I am 42 years-old). Here are our sweets, and one of them was a rainbow-coloured iguana!

Sweeeeeeets!

After the fruit and veg and sweets, we headed for the health food shop so I could get some gluten-free stuff; I’m not 100% GF, more like 80%. If I want a treat (which in France is constantly), then I have it, but day-to-day I have GF pasta, GF oats and GF bread, and bake with ground almonds and/or GF flour. I was surprised at the amount of GF food available; I had always thought that the French would scoff at any idea of intolerance to ‘du pain’ in the same way that they think vegetarianism is a terrible affliction rather than a lifestyle choice. We went out for lunch on Saturday and the menu was chock-a-block with foie gras (despicable; I’ve managed to stop Gautier from eating it, finally), pork, veal and other animals. There were fish options, thank God, so I chose scallops followed by the lobster ravioli. There wasn’t one vegetarian option on the menu. I guess the number of vegetarians in a small town like this can be counted on one hand, if at all, so there’s really not much call for it. If I was vegetarian AND watching what I ate for digestive purposes I’d starve to death. Here’s my plate; it’s not for the faint of heart:

‘Help meeeee!’

I look fine on the outside but I feel like my entire insides have been replaced with those of a very old person’s, so food is of great comfort to me as I’m often quite saddened by stuff. I’m always on the loo, I can’t digest my food, can’t stand up straight, can’t walk far, I’m always freezing cold, I take tonnes of medication, I’m always tired… the list goes on. Basically, I’m trapped in the body of a 90-year-old, so ageing is not something I relish one bit. I’ve got numerous hospital appointments coming up which will determine whether or not I need to consider switching biologics. I’m also presenting with symptoms for Crohn’s or colitis (again? With no colon? Yeah, I know). I have ulceration in my J-pouch but I’m getting pain and bloating every time I eat at the moment, and I’ve never had that. What amazing timing.

Gautier’s mum and stepdad recently converted the ground floor of their massive house into a self-contained apartment which overlooks the garden, so when we stay we have the equivalent of a one-bedroom flat to ourselves and I have a sneaky space upstairs in which to write. The house is four storeys; the entire top floor is a cinema room. Yes, a cinema room. Bonkers or what? I should also mention at this point that Gautier’s stepdad is brilliant, and the crazy shizz here is that he’s like, six years older than me. How funny is that? So when people say ‘Ugh, holidaying with your in-laws, what a nightmare!’ I’m like, ‘Dude, you have no idea.’ They’re so far removed from stereotypical in-laws it’s untrue; it’s more like being around friends, although Gautier’s mum never stops cooking and still buys his socks and stuff I don’t have any friends who do that for him. Here’s the house, it’ll do:

Bit small, but I’m sure we’ll manage

 

FullSizeRender 3
I went shopping and bought ALL the Breton stripes. Next up, berets and onions!

We visited the charcuterie the other day. Check out the hideous stuff these people eat. I managed to make the butcher laugh, which must mean I know some French. I told him that it was like a horror film, all these animal innards everywhere, even BRAINS. We came away with a giant piece of beef, and a pig’s foot. The latter was ‘a treat’ for Monique and Gautier. Bleuch!

FullSizeRender-3
Pig’s feet. A treat, apparently

 

Vomit Cake, otherwise known as tripe terrine with carrots in it. Have you ever?

 

Advertisements

‘Jingle Bells, Crohn’s Disease Smells’

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

To buy a signed copy leave me a comment at the foot of the page; I have a box of them at home and make a little more selling directly than I do on Amazon. I thank you!

 

So 2014 is drawing to a close and I’ve got to admit, I’ll be glad to see the back of it. It’s never easy to say you’ve had a good year when you’re riddled with incurable illnesses, but this one has been particularly tough, somewhat akin to being pecked repeatedly on the head by an emu whilst trying to climb my way out of quick sand (and don’t say ‘well, how do you know what that feels like, stupid?’ because actually I was once pecked repeatedly by a turkey, which is similar to an emu, and I have also been stuck in quick sand for quite a while, at the age of 10 on a school trip to Mont St Michel, no less).

Here are the highlights of rubbish stuff that’s happened this year:

I was diagnosed with onset Crohn’s disease, my actual nightmare come true. I’m currently waiting for an appointment at Guy’s hospital to see if my hideously ulcerated J-pouch has become even more hideously ulcerated, in which case it gets complicated and terrifying on the treatment front. The discs in my spine are more worn, my scoliosis more prominent. Go me!

I have been consistently ignored by the three biggest charities who represent the diseases I have. I’m trying desperately to volunteer for them as a media spokesperson, patient representative, you name it, I’ve tried it, all to no avail. Since publishing my book I’ve written several pieces for national magazines about living with ankylosing spondylitis and inflammatory bowel disease; I have been on the radio talking about it, too, yet when I send these articles to said charities to say, ‘Look here, chaps, if this is what I can do all on my own to raise awareness of these conditions, think what we could achieve as a team’, I hear nothing back. N-O-T-H-I-N-G. Here I am waving frantically with a decent enough face and an extensive media background and do they use me? No, they do not. They actually ignore me. Not even a reply, and I’ve tried several times. To say it frustrates me would be putting it mildly.

Gautier was made redundant a few months ago. Yes, that. Other people say things like ‘Oh no, we’re now a one-income family!’ while we started to say, ‘Oh no, we’re a no income family!’ because of course, I don’t have a proper job being blighted by pain and suchlike. We have a sort of plan; in all honesty it’s not going that well at the moment but more on that in the New Year if I haven’t actually imploded with anxiety by then.

Oh, I don’t know, how about Gautier’s mum spent six months of the year having treatment for cancer and now my dad has just been diagnosed with skin cancer. Now Squeaky, our cat, is really sick. We’re off to the vets for a second time tomorrow; she has an infection of some sort and isn’t responding to treatment. It might be liver or kidney disease. Gautier is currently trying to get some tuna water down her throat with a syringe because she hasn’t eaten in four days. To say we’re worried is an understatement. Poor Squeaky.

Some good things have come out of the past twelve months, though, thank heavens for that:

I’ve made new far-flung friends via the power of the interwebs and my obsession with ’40s and ’50s clothing. It’s true. There’s a Facebook group for a bunch of us worldwide who are ridiculously mental for it; we buy and sell from each other and sometimes, we make an actual friend out of it. New friends for 2014 include the lovely Lorie from Florida (she has invited me to come and stay with her, and I’d really like to because there are palm trees everywhere and she likes cocktails). Then there’s D’arcy, a fashion stylist from NYC who has a 17-inch waist thanks for four years of corset training. We absolutely do not have that in common; I am more into ‘pyjamas’ training and have a 27-inch waist but D’arcy wears furs and doesn’t own sweatpants and is teaching me how one wears an original 1940s kimono and stuff like that. For that I need an original 1940s kimono. Oh hang on, that’s my Christmas present from Gautier. Yes, really, a kimono. I shall probably wear it with slipper socks and thermal undergarments until I receive instructions on how to proceed.

Last but not least there’s Ashley, a generous, funny and super smart Perth resident who hails from California and makes lobster and seahorse brooches out of plastic (I have purchased several) and loves donkeys as much as I do. She has even crafted a donkey necklace for me out of vintage donkey charms and stuff in return for a copy of my book. I mean, how great is that? And because I’m bananas, she’s making me a banana necklace too! It’s a shame I don’t have a magic carpet because these girls are super smart, super generous and super funny and I can’t think of anything better than being able to hang out with them in real life talking about donkeys and corsets and drinking espresso martinis whilst playing Scrabble. Here I am modelling Lonny the Lobster, he is a bit tired because he swam all the way from Perth to Brighton:

10815932_306099559579007_362595796_n

Regular readers will know that I’ve found two great gastro consultants at Guy’s and St Thomas’ in London; if only I’d been under their care when I was first diagnosed with ulcerative colitis I’m pretty sure I wouldn’t have been left fighting for my life. Oh well, better late than never, huh?

I went to New York with mum and dad, and as exhausting and stupidly cold and wet that it was, without enough time to do all that we wanted to do, it was still amazing. Being able to take my parents for a cocktail at The Waldorf Astoria in New York City; well, that was something else. Gautier and I also went to Venice, of course, with his mum and step dad. Two trips of a lifetime in one year; not bad. The only thing is, I felt they had to be done before I’m too sick to travel, or more to the point, too sick to be able to afford the travel insurance. I am afraid that what’s left of my intestine is about to disintegrate, that more surgery is on the cards, that I won’t make it through more surgery anyway, that’s kind of stuff goes through my mind every day when I wake up. It’s hard enough to nip to the post office or go out for a coffee when your intestines are failing you, let alone go on holiday. I had so much trouble in Italy with the toilets, or rather lack of. Three times I had to ask a hotel to use their facilities and six times I went into the toilet at a cafe or bar only to find the bathroom was actually a hole in the floor with a toilet seat around it. Try using that full stop when you’re a woman, but when you’re a woman with exploding bowels and fused spinal stuff, well, it doesn’t work. I had a few close calls and won’t risk it again. But I went to Venice, so…

My little god-daughters have turned into the funniest little humans imaginable; they are mad for the same things as I am; Transformers, dinosaurs and cars. I do wish I was well enough to see them more often but hopefully once they’re four they’ll be able to get the train down to see me on their own *joke*

Right now I’m thankful that I’m able to eat some foods (albeit not much, since I’ve had to give up almost everything I love due to so many things causing intestinal blockages), definitely able to walk Cookie the dog when my spine allows me out of the house to do so, and thankful that basically, even if things keep on going from bad to worse, I’m still alive to take photos like this:

IMG_1943

P1050847

IMG_1634


Here’s wishing you all a lovely Christmas and a Happy New Year
from the godmother of the best twin girls (!) ever!

10525895_10154959183785607_3828110358770241733_n

Remember, Remember, I Really Hate November

 

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

I had forgotten how much I hate November. I don’t know why I’m surprised by how I feel when it comes along, but it seems to be worse with every year.

On 2nd November 2001 I was admitted to hospital with what turned out to be toxic megacolon. It took five days before doctors realised that I was dying. I lay in the hot, sticky hospital bed listening to the fireworks going off all around me, wishing more than anything that I was standing in the park with a toffee apple and a sparkler watching all the beautiful colours explode against the dark sky. Fireworks are used at the end of celebrations – at weddings, on New Year’s Eve – and yet here I was, miles away from my family whispering ‘Help me,’ at the nurses passing by, a futile exercise if ever there was one, while all the whooshes and whistles and explosions suggested togetherness, joy and excitement. It would be like letting off a party popper at a funeral – highly inappropriate and very upsetting for everyone.

Fourteen years later and I still feel the same. I suppose it’s like mourning a loved-one; there’s no getting away from the reminders. It’s not just the fireworks, it’s the smell of November, the sudden change in the weather, the drop in temperature which just seems to come out of the blue. The sky changes colour, the air has this kind of thickness to it… it even smells different. I can taste it, this metallic tang which sticks to the back of my mouth and makes me want to throw up. November is the month where everything good has gone: the leaves on the trees, the flowers in the garden, the sunshine… to me it seems fittingly bleak. It represents unwelcome change and loss, which is exactly what I went through all those years ago. Nothing good came of it. I almost died. The second operation almost killed me. The third operation, the only one which went well, took place exactly a year after the first one, to the day. What are the odds of that? And that’s not all. My mum’s mum died in November. I was nine years-old when she passed away; my brother was just a few weeks old; my mum was six years younger than I am now. My nan had bowel cancer; twenty years after watching her slip away my poor mum watched her daughter dying as her diseased bowel failed her, too. I hate November, as much as you can hate a month for anything, and I think my body knows it, too.

This week I have endured more pain than I have in a long time. Well, that’s what I thought, until Gautier reminded me that I always have ‘trouble in November’. I have had such excruciating pain down my right side, from the ligaments in my groin affecting my ability to walk to such acute pain in my neck and shoulder that I felt physically sick. The cartilage and bone is painful to the touch; I feel as though I’ve been thrown from a horse. I have pain from three conditions – ankylosing spondylitis, scoliosis (not just one, but two – lucky me!) and fibromyalgia. I would say that the pain just blurs into one, but I can pinpoint exactly what condition is causing every bit of pain. Now I’m not good with opiates, they’ve always made me sick, but here I was with the pain so bad it was making me sick anyway so I took them. I have liquid morphine, dihydrocodeine and various other pain-relieving stuff to get me through times like this, but I can’t bear to take them. In the end, I did. This is on top of the anti-TNF therapy I inject twice a week, and all the other stuff I throw down my throat to attempt to keep my intestinal ulcers from multiplying and my inflammation levels down. Here’s just a bit of it:

Yes, the Chanel is medicinal. I don't drink it, but no matter how awful I feel, I put some on
Note the bottle of Chanel. Even when I feel at my worst a spritz of perfume is top of the list

The pain was a little better, but the nausea got so bad I couldn’t stand it. I couldn’t sleep, I couldn’t get comfortable in any position (no change there) and I couldn’t even dress myself. I just wanted to cry. Gautier and I don’t have the best social life, as you can probably imagine, but we had planned on a nice seafront walk and a trip to the cinema this week. We didn’t manage either. I spend half my life making plans and the other half cancelling them. I’ve left the house twice – once to pop next door to cuddle Cookie and let him out for a wee (Cookie is a dog, by the way) and once to see the sheep which are grazing behind our house.

Yes, you read that correctly.

We have sheep grazing behind the house. I’m mad about sheep. I love them. They’re only here for a little while and I insisted that despite the dizzy spells and problems with my leg, I needed to go. We went. They were lovely. They all had tails and although they refused my offer of fresh vegetables (yelling ‘HELLO! DO YOU WANT SOME CAULIFLOWER?’ seemed to make them a bit uneasy) it was half an hour very well spent. Here are said sheep. Lovely, aren’t they?

44
Me: ‘HELLO! DO YOU WANT SOME CAULIFLOWER?’

 

33
‘Got any chips?’
The only nice thing about November is how the leaves look for about a day, before they turn to mush
The only nice thing about November is how the leaves look for about a day, before they turn to mush

 

So it’s taken me a week to feel able to write this blog, and I’m not out of the woods yet. I know it’ll be a few days before I feel able to drive – and my definition of ‘able’ is not the same as most people’s. If my arm doesn’t snap off, I consider it safe to drive, even if it makes me cry. Really. I so much wanted to see the poppies at the Tower of London, but I can’t see that happening. We hadn’t been before now because in all honesty, I’ve felt really rough for about three weeks, and I didn’t fancy being swept up in swathes of tourists and being stuck in a massive crowd. I don’t like crowds at the best of times, but when I’m in a lot of pain, I can’t think of anything worse than being jostled or unable to get to where I want to go. Being sick makes me feel so vulnerable; how many times have I been crossing the road only to find that the driver of a car or a lorry doesn’t slow down, but expects me to speed up? How many times have I frantically waved my arms to say, ‘STOP!’ because I don’t walk with a stick, I’m not in a wheelchair, you can’t SEE that I’m in pain so you just expect me to run? The same would happen in a crowd; nobody would know that bumping into me would leave me doubled-up in pain; nobody would know that having to stand on the tube is my idea of hell; being squashed, being told to ‘move down’ when there is nowhere to move to, trying to hold onto something so high above my head that I can’t reach it to steady myself because my arms don’t go over my head… nobody knows but me. Well, nobody but me and the thousands of people out there with ‘invisible’ illnesses who show no outward signs of the pain we’re in. I know I’m not alone, but it certainly feels like it sometimes.

So right now I have no choice but to stay home and wait it out. I want to end on a positive note, though. Last week, before I couldn’t go out, I went shopping. I bought some hair dye, some thermal socks, a nice jumper (mum will be pleased as it has a big neck bit to keep me warm. I have a habit of having a bare neck and then complaining that I’m freezing cold) and a new hat. I then found a nice cardigan in the charity shop AND three books. I love buying second-hand books, it’s my absolute favourite thing to do.

Other than to visit sheep.

2
My new hat – it looks like a monkey’s bottom!

 

books
Some books, yesterday

 

It Takes Two To Make A Thing Go Right

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

To buy the Kindle version of my book, click here

Righto, I’m so late with this it’s untrue. You’d think I’d been kidnapped or fallen down a well or something, but I hadn’t, it’s just been a bit mental and stuff. More on that another time.

I thought I should just write a little update on my last appointment at Guy’s hospital – the appointment I had to fight so hard to get, remember? Well, when you have inflammatory bowel disease and ankylosing spondylitis and all that kind of stuff, you don’t very often get actual good news. Nobody’s come up with a cure yet (lazy scientists!) so until that day comes, it’s never going to be good news. What it might be (aside from dreadful news) is OK news, and OK news can go from ‘just OK’ to ‘actually brilliantly OK’ depending on a) how it’s delivered and b) who delivers it.

On this occasion Gautier and I were shown into the office of a consultant we’d not met before. Alarm bells rang as I thought, ‘Please don’t let me have to go over my entire IBD history again, ugh’ but they soon ground to a halt when said consultant smiled and said, ‘I can see you’ve had a bit of a crap time with your health, Juliette. Let’s see what we can do to make things better.’

80-ball-bingo
Seriously, that’s a good start. He’d not only read my notes (something which NEVER happens at the hospital in Brighton; they always ask me about my stoma, for a start, which I haven’t even had for 12 years), but he understood that my health issues are not only complex but that the level of care I’ve received up until now hasn’t been – how can I put it? – up to scratch. I immediately let my guard down and let him do his stuff. It turns out that my usual consultant had decided that a second opinion would be valuable in assessing my course of treatment, and at the end of a nice discussion about it all, in popped said other consultant. They both agreed they were ‘on the same page’ with it all and that whilst I was not in any pain from what might or might not be Crohn’s disease, it’d be best to treat the inflammation and ulceration gently rather than shove steroids or other nasties down my throat (which is what the advice was from Brighton, along with telling me not to eat food for two months). Yes, that. Slow clap, etc.

So, I’m back on the VSL#3 pro-biotic stuff which tastes and smells like baby sick (actually, I’ve never tasted baby sick, other than when I was a baby being sick, but I think it’s so horrible that I remember what it tastes like. As will my poor dad, for I was once violently sick in his beard late one evening in 1972. He shaved it off soon after that. Can’t say I blame him.

P1020795Anyway, I don’t care how rank it is, it’s good for me. The ulceration hasn’t got any worse during the last six months, so they’re going to have another look at my innards in spring to determine whether or not I need to switch anti-TNF therapies to one more suited to treat IBD than ankylosing spondylitis. It’s a massive deal, even the idea of switching biologics because the one I’ve been on for the past decade works really well for my pain. I came off it last summer and endured the worst hell imaginable before going back on it as fast as I could.

When we got home I sent the new consultant a copy of my book and a thank you card with a shark on it, along with a letter explaining that since being under the care of Guy’s I’ve actually felt respected for the first time. I’m spoken to as though I have a brain and knowledge of my own diseases, which I do. We had an actual discussion, rather than what’s always happened in the past – a consultant looking bored the minute I sit down, who hasn’t even read my notes, who has a ‘one disease fits all’ attitude to treatment. They never acknowledge that I also have AS, they just seem to read from a sheet of paper which says ‘IBD – stop eating, take steroids, go away’. So the upshot of it is that my innards aren’t very well, but we’re treading gently. If the ulceration progresses, I’ll need to do something drastic, but right now I’m just thankful that after 14 years of feeling as though I’m fighting not just these diseases but also the medical profession, I’ve finally got not just one but two consultants who genuinely seem bothered about whether or not I live or die, and that’s what makes OK news into great news.

boom-comic-pop-art-art-print-poster

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…

The Italian Job – Travelling with IBD & Ankylosing Spondylitis. Gah!

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

To buy the Kindle version of my book, click here

I have decided that I write too much. Not generally, as in my shopping lists are concise and Facebook statuses have been known to stop at one sentence, but I mean on here. Gautier always tells me ‘People don’t want to read a lot when they’re looking at a blog on their phone or iPad’. I rubbished his suggestion of making my posts shorter, and kept typing. I write stream-of-consciousness babble; I always have done, even when I was getting paid to write. Sometimes it makes sense, sometimes it doesn’t, but there’s no filter. It just pours straight out, and I type as fast as I think, so it all gets on the page.

You’ll see that I’ve already wasted a good 30 seconds of your time explaining all that; I clearly don’t listen, do I?

So, in a bid to stave off boredom if you’re reading this on your iPhone, on a train, and you only have one stop to go and won’t get to finish it before you get off said train, here’s this month’s update, and by my standards, it’s almost in a nutshell:

I managed to tick two things off my bucket list:
1. I wanted a major hair colour change. I wanted to look like an apricot. Actually, I wanted apricot coloured hair, I didn’t want to look like an actual apricot. That would be well stupid. I’ve dyed my hair since I was 17 years-old. I’ve had grey hairs since I was 19, and then white hair appeared after my spell of post-traumatic depression in hospital in 2001. As a teenager I dyed it varying shades of red and plum, then I went chocolate brown, and in 2001 I dyed it to match how I felt – dark. Blue-black. I loved it for many years, but then I just started to look washed out. In 2008 I dyed it red, and have been various shades of it ever since. So, my dear friend Amy (she’s a proper hairdresser, don’t worry) came over a couple of months back and bleached the crap out of it for a few minutes, turned it fluorescent yellow with white roots (alarming) and then slapped something called a toner on it to make it look less like the yellow of a road bollard and more like the orange of a belisha beacon.

The verdict? I love it. Everyone loves it. Even complete strangers compliment me on it. I wish I’d done it years ago. Better late than never, though, right? Funnily enough, it’s the exact same colour now as it was when I was two years-old. Bucket list WIN.

2. I took said new head to a place I’d always wanted to visit. That place was Venice. I’d wanted to go for as long as I can remember, but Gautier and I couldn’t afford to go (unless we just walked around the city for days on end and didn’t actually stay in a hotel). I’ve always been so sad that we didn’t have a honeymoon, and double sad that the honeymoon we never had wasn’t in Venice. That makes no sense, yet somehow it does. So instead of going on holiday in the South of France with Gautier’s mum and step dad, which is what we do every summer (not too shabby), Gautier’s mum said, ‘Shall we go to Venice?’

She is not silly. She knew how much I wanted to go. She also wanted to go, obviously. Loads. She also knew how much I wanted to not have Crohn’s Disease (on that note, I am still waiting to find out whether I have it or not. Yes, still. Yes, seven months on. I know, I know…)

So courtesy of my very generous in-laws, Gautier and I made it to Venice. Boom!

And do you know what? It was even more spectacular than I had imagined. I kept gasping at every turn, exclaiming ‘OHMYGODLOOK!’ every five seconds, sometimes more frequently than that.

The food was divine. The weather was glorious. I discovered a new drink – the Venetian spritz, and very nice it was, too. I also discovered a whole new level of exhaustion (by the time we got back to the apartment I could barely move, and on two occasions actually full-on cried in the bath) and wished I’d brought a cushion with me from the apartment every time we went outside. I have ankylosing spondylitis, and whenever I sit on a wooden or metal chair even for two minutes, I want to cry. I sometimes do. Even if I didn’t have spinal disease, why on earth do people design chairs which you don’t want to sit on? Metal or wood, I don’t care which, I hate them. I don’t ask for much in life, just a bit of padding on a flipping seat. I had to sit down every few minutes because my legs kept going wobbly (a fibromyalgia flare-up, haven’t had one for almost a year so shows  how tired I was ), then couldn’t bear to be seated because the chairs were so uncomfortable. Honestly, I can’t win. I also can’t complain, because that would be a load of rubbish for everyone else, so I tend to grimace and drink my Perrier and smile and eat painkillers.

Sometimes the toilets left a lot to be desired, too (hole in the ground, anyone?). I mean, who decided that women were able to pee standing up, for one, and for two, how does anyone with IBD manage? In short, you don’t. The times I walked into a toilet only to come straight out shaking my head furiously and gesturing that we try somewhere else… on that basis, I wouldn’t recommend it if you’re in the throes of an IBD flare-up. So as incredible a trip as it was, it was the hardest, physically, that I’ve ever done. The heat left my stomach so bloated I couldn’t get half my clothes done up and wore the same dress three days in a row (I washed it, don’t worry). My swollen ankles and giant, puffed up feet left a lot to be desired, too.

I spent the entire four days saying to Gautier, ‘Pretend this is our honeymoon, just for a minute, pleeeease’ until he said, ‘Shut up, monkey!’ and I made sulk face for half an hour.

All I can say is despite the terrible pain, the tears, the discomfort, the terrible pain (did I mention that?), the bloating, the nightmare chairs and nightmare toilets, the exhaustion and all of that… well, I felt nothing but blessed to be able to fulfill a lifelong dream. I’d finally made it to the most beautiful place on earth, with the love of my life and I couldn’t have been happier if I’d been there with Tom Cruise.*

 

Yes, this is actually REAL
Yes, this is actually REAL
gh
Just ridiculous. How is this an actual place?
Donkeys and new hair in Venice. Boom!
Donkeys and new hair in Venice. Boom!
I love this husband, I do. Fortunately he happens to be mine
I love this husband, I do. Fortunately he happens to be mine
Venetian lampposts are the nuts!
Venetian lampposts are the nuts!
Even the signs... *sigh*
Even the signs… *sigh*

*maybe

 

Crohn’s, colitis or maybe pouchitis? Who knows?

 

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

So, Gautier and I went off to the hospital last week to get the results of my small bowel MRI. I’ve spent five months feeling as though my world has caved in, that Crohn’s would finish me off where colitis had failed to 13 years ago, and that it would be sooner rather than later. Not only was I running out of fight physically, but mentally, too. Hardly surprising, all things considered.

Although I’m asymptomatic for Crohn’s, I was the same for ulcerative colitis. With that disease I had no pain, no weight loss, no rushing to the loo, nothing but the tell-tale loss of blood from my under regions. I had no idea anything was wrong this time until I had the endoscopy, and now I just wanted to know how wrong things were.

Apparently the MRI showed exactly what the endoscopy report from Guy’s showed – that there is ulceration in my j-pouch which continues along 5cms worth of my ileum. Brighton’s report had said that my pouch was ‘clear’; their mistake led to them assuming I had Crohn’s. Guy’s, on the other hand, said, ‘Let’s see what the MRI says, because it’s your j-pouch which is ulcerated, and there’s a good chance that is treatable.’

And so to last week.

‘It’s actually more likely that it’s pouchitis than Crohn’s’, said the consultant, breezily. I mean, this was good news, so I get the upbeat delivery, but it wasn’t the news I had been expecting.

Seriously, what the what?

surprise-cat
‘Say WHAT?’

Yep. It doesn’t mean that it’s not Crohn’s for sure, or that I won’t get it at some point – I could be diagnosed next week, next month, next year, in two years… there is no telling with IBD, and it’s pretty unlikely I’m going to avoid reversal of my j-pouch back to an ileostomy if I have recurring pouchitis. However, I’m taking the good news and running with it – right now, it’s maybe not Crohn’s. I’m on strong antibiotics and will then be on a course of mental pro-biotics to even things out.

If I can persuade Guy’s to do another examination, I’ll know if it’s worked.

 

'Yep, you're good to go'
‘Yep, you’re good to go’

So that’s where I’m at; a heady mix of relief, bewilderment and anger.

I’m angry because the hospital which left me to die 13 years ago presumed the worst from sigmoidoscopy results which were actually completely wrong, and subsequently scared the life out of me.

I’m angry because I was told I’d need to take steroids, Azathioprine (just read the side effects of this beauty) and probably switch biological therapies. Switching is not as simple as it sounds; the one I’m currently taking – Enbrel – works for ankylosing spondylitis. I am testament to that; I came off it last summer and couldn’t breathe by day eight the pain was so excruciating. Humira, the biologic used in IBD, and a newer, ‘sister’ drug of Enbrel, doesn’t work as well for AS. That’s meant five months of me wondering whether the AS or the Crohn’s would kill me, because it would be one or the other – to treat the Crohn’s would mean not treating the AS. I can’t live without Enbrel, and that’s a fact.

I refused to consider steroids. I refused to consider azathioprine. I refused to consider any kind of medication until I had had an MRI to see exactly what was going on. I asked to be referred to the dietician instead, reasoning that I could discuss ways in which I could change my diet to improve my chances. As it is, I eat so healthily already I wasn’t sure I could make any improvements. I’d already cut out gluten and dairy, I’ve never eaten processed food – no takeaways, no ready meals, no fizzy drinks, blah blah. No fruit juice (never have), a low-sugar diet in general and one which is high in protein and ‘good’ fats. In short, I was already doing everything right, I just wanted to see if I could do anything more.

I wasn’t asked about my diet at any stage. I volunteered the information, but still, no discussion.

Instead, I was told to actually stop eating.

Yes, really.

For two months!

I wouldn't be needing these for a while
I wouldn’t be needing these for a while

I was told that the only way to bring the inflammation down was to drink milky, sugary, high-calorie drinks made by a well-known multi-national confectionery company. For two months. That’s eight weeks, or 56 days. No tea, no coffee, no booze (and I’m not sure I can live without that, either), no nothing – just banana or chocolate or strawberry flavoured sugary milk while I continue to cook dinners and go actual food shopping so that I may feed my husband.

Of course, anyone with more than six brain cells knows that sugar causes inflammation, and that lactose can also cause an adverse reaction in the gut. I also knew that I wasn’t malnourished, nor was I having trouble absorbing food. There was no reason whatsoever to put me on a liquid diet – and a questionable one at that – for eight weeks. None at all.

‘But this is what we do with patients with IBD’ said the dietician, looking exasperated.

‘But why?’ I asked.

‘Well, we don’t know how it works, it just does,’ I was told.

I was hoping for a more constructive answer than that. Initially I was in tears. My idea of my own liquid diet – anti-inflammatory smoothies and soups – was rubbished. Eventually I thought, ‘hang on, this is bullshit’. A letter was sent to my GP saying that I had gone against medical advice in following an anti-inflammatory diet (because that’s bad how?) and in turning down the recommended treatment, ie. not eating actual food.

‘Are you refusing treatment,’ he enquired.

‘Well yes,’ I said, ‘at least until I know I actually need it.’ Christ.

The very next day I implemented my anti-inflammatory diet into my already low-sugar, 95% gluten and dairy-free diet (I have the odd lapse – nobody’s perfect, right?) and lo and behold, I’m now told I don’t have Crohn’s anyway.

Anyway, as usual, I digress. We left the hospital, with me still going ‘Eh?’ and I called my parents the moment we stepped outside.

‘I’ve got good news, and bad news,’ I hollered over the traffic. ‘The good news is it looks like I have pouchitis, not Crohn’s. The bad news is you spent a fortune taking me to New York, possibly for no reason.’

Dad was so happy to hear that I might not have Crohn’s that I don’t think he was that bothered about the money.

An antique childrens toy monkey that make noise
Dad was so happy he got his cymbals out

‘Let’s hope they’ve got it right, and it is pouchitis,’ said mum.

‘Well,’ I said, ‘this is the thing – they keep getting stuff wrong, so how do I know that this time, they’ve got it right?’

The answer is, I don’t, but I’m seriously hoping that Guy’s hospital will also tell me it’s not Crohn’s at this stage, too. It’s just a shame I don’t have an appointment with them until September, which will take it up to seven months of ‘dunno, maybe, could be, might not be, let’s see, let’s see a bit more, dunno, maybe, yes, no, maybe, up, down, dead, alive, better, worse, good, bad, dunno, wait, maybe’… and so it goes on.