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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.

muesli

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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Martini On The Rocks, anyone?

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Last month I described how much it hurt to inject Humira, the anti-TNF biologic which is prescribed for my ankylosing spondylitis and IBD. I scoured the internet for advice on how to reduce the pain, and found that most patients favoured numbing the injection site with an ice cube before injecting. Another patient’s nurse had advised that she rub either side of the site gently as the needle went in to increase blood flow and encourage the solution to dissipate more quickly. Someone else said that putting their leg up on a chair so it was straight, rather than bent, worked wonders. Frankly, I’d have hung upside down from a tree whilst smoking a cigar and counting to 100 in Mandarin if someone had suggested it.

Armed with that information in mind, I set up shop for my next injection. Believe me, I had to gear up to that all day. It’s like knowing you have to punch yourself in the face after dinner to give yourself a convincing black eye so you don’t have to go to work the next day. I mean, only a total mentalist would just go ahead and punch themselves in the face, right?

This time I poured myself a Martini, took a fake Cornetto from the freezer and decided to try out three new moves:

Right, let's do this

Right, let’s do this

Move One: I put my leg up on the chair, out straight rather than bent

Move Two: I rubbed the injection site gently either side of the needle as I pushed said needle into my thigh (this was harder than it sounds. I could have done with three hands at this point)

Move Three: Instead of trying to inject in one go, like I did with Enbrel, I thought some breathing exercises would help. I took a deep breath and exhaled as I pushed the plunger thing down for two seconds. I stopped for another two seconds, then did the same again. I was still on the verge of tears but puffing my breath and taking it slowly worked. It was maybe 30% less painful than before.

Two weeks later, I did all the same stuff but I also numbed the injection site with an ice-cube, swapped the fake Cornetto for some Lindt milk chocolate and substituted the Martini for a rather nice dessert wine.

Booze, drugs, legs

Booze, drugs, legs – like a scene from ‘Trainspotting’ only clean

I’m not sure if the ice, the dessert wine or Lindt were to blame (possibly none of the aforementioned) but I do know that it hurt more with a cold leg, so I scrubbed that move off the list.

Such a tiny bit of blood for something which hurts so berated

Pah – such a tiny bit of blood for something which hurts so flipping much!

My dead mink, Fried Eggs, then picked up the syringe and said he wanted to try it because, and I quote (no, really) that he ‘had a sore leg from falling out of bed’. I had to wrestle it from his little paw before he hurt himself. Kids, eh?

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Fried Eggs, no!

So there you have it. It still hurts, but a bit less. Really, I wouldn’t even do it if I didn’t have a treat at the end of it. That, and the fact that without it, I would die. I’m not being dramatic. I would die. The pain would be so agonising that I would end up throwing myself off a motorway bridge. Please don’t think I’m being glib about suicide; I’m not. I’ve been in that exact same situation and it was anti-TNF therapy which saved my life a decade ago, and is still doing so today.

That’s my ritual now. I inject, Gautier brings me a treat and afterwards we watch ‘Brooklyn 99’ on Netflix so I can laugh my head off rather than think, ‘OW OW OW OW OW MAN THAT STINGS’ for ages.

In other news, I fell off some rocks and acquired a salad spinner.

The salad spinner is my new friend; it’s made by a company called OXO who, in a nutshell, design everyday objects things better than other companies design everyday objects. If you’ve got fibromyalgia or arthritis in your arms, spinning salad is quite an effort (although granted, not one you probably make that often). I can’t even eat salad very often as I can’t digest it, but when I do, I use this. It has a clever button which does all the work for you while you stand there resting your arms and saying ‘Keep going, little spinner!’ Even their vegetable peelers glide over carrots like a dream; never thought I’d find pleasure in a peeler but I do. If you’re in pain, every effort hurts, so it’s worth investing in items which reduce that. If you’re not in pain, you’ll still have fun spinning salad. You can thank me later.

As for the rocks, Gautier and I were at a seaside town north of Bordeaux called Royan which we didn’t much like. I was in my bamboo ensemble: bamboo bag, bamboo earrings, bamboo bangles, bamboo-ish dress with bamboo buttons; here’s me taking a photo of myself in the loo, doing my best stupid idiot face into the mirror:

Bamboo overload

Bamboo overload

It turns out Royan didn’t much like me either; after a lovely dinner at a beach side restaurant at sunset, I suggested we go for a little walk on the sand. There I was, full to bursting with fish goujons and chips and so happy to be back by the sea (I miss Brighton so much I can’t tell you). Anyway, I digress. Here is my dinner:

Yum! Everything was going so well...

Yum! Everything was going so well…

Looks perfect for a midnight stroll, doesn’t it? That’s what I thought.

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I was well excited about the sand

Granted, I’d had a cocktail which must have clouded my judgement somewhat, but here’s what happened: I attempted to climb over a low wall, onto some giant rocks, then step down to the sand. Gautier was helping me. It should have been one, two, three steps and landed. Unfortunately, what I had thought was sand was, in fact, a massive, flat rock which was just looked – under the midnight sky – like sand.

Needless to say I lost my balance and was catapulted onto my left shoulder and my FACE. Yes, my face. My right leg went from under me and my foot scraped itself on the rock. Thankfully my face found a bit of sand rather than rock. I was holding my tiny bear, Chips, in my left hand. He screamed, I screamed and my aim was to save him from hitting the sand, so I held him aloft, which upset my balance even further. What a div.

Gautier picked me up and told me off. He is like that; he tells me off first, then asks if I’m OK. I wasn’t OK; my foot was bleeding and I did a cry.

Off we went, back to the hotel (which was fortunately about 20 feet away), with my sandal in one hand and a very traumatised Chips in the other. I limped back to our room and did the first aid bit. Gautier enjoys pouring white spirit on cuts and grazes; I was pushed over by a strong wind once and grazed the hell out of my hands. He just threw this stuff on them like a torturer would. I was squealing like a stuck pig. Man, that stuff BURNS. Chips wanted to help, so he put the plaster on.

Poor Chips; he was so upset but stayed calm to administer first aid

Poor Chips; he was so upset but stayed calm to administer first aid

Great job, Chips!

Great job, Chips!

The next day I limped about even more than I usually limp about, and wondered aloud my shoulder hurt so much. ‘Because you fell on it,’ Gautier reminded me. By day two, I could barely stand on it as the bruise started to come out. On day three I got bitten by something in the garden (not a camel, more likely a spider) on the same foot, which then blew up like a hideous sausage.

At one point I thought I was going to have to saw it off; fortunately some anti-histamines and a herbal concoction from the mother-in-law’s medicine cabinet saved me from that. Hallelujah.

This week I am mostly attempting not to injure myself or get bitten.

I’ll let you know how I get on.

The Drugs DO Work – But Why Do Humira Injections Hurt Like The Worst Kind of Hell?

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Right, so I promised I wouldn’t take so long to write the next installment of my silly life, but I broke my promise. I don’t know where the time goes; really I don’t. Humira, then. For those of you you wondering what that is, it’s not a brand of Japanese car (come to think of it, it might be. I haven’t checked), it’s the biological drug I switched to at the beginning of April. I went into detail about why I switched after a decade on Enbrel, a similar biologic, in my last blog. I also talked about how apprehensive I was about switching. It turns out that so far, it’s probably one of the best decisions I’ve ever made (aside from saying ‘Yeah, OK!’ to Gautier when he proposed to me, drunk out of his French mind back in 2007).

Gautier, yesterday. Maybe

‘Marry moi!’

My new rheumatology nurse specialist couldn’t understand why I was still being prescribed a drug which wasn’t working. I mean, it was working up to a point – I could walk most days and had far less pain, generally, than I did before I started taking it – but I could count only around 20 pain-free days during the past year, a calculation which was met with a gasp from the nurse and a kind of ‘Right-that-doesn’t-sound-good-when-I-say-it-out-loud’ face in return.

It was at that point that I realized I’d been a bit hard-done by. Any rheumatologist worth his salt would have suggested I switch years ago. Of course, having one 20-minute consultation a year – that’s right, one a year – doesn’t give them much time to work out that there’s something strange afoot. They don’t have time to read their patients’ notes before they sit down, so at least five minutes of the appointment is spent reading the latest blood results and saying ‘Right, what is it you’ve got again? Remind me.’ The first rheumatologist I had would start every appointment with the sentence, ‘So how are you getting on with the bag?’ He was referring to my ileostomy but I hated that he called it a ‘bag’. I’d say, ‘Actually, I haven’t got it anymore, I have a J-pouch. I didn’t have it last time I came in either, nor the time before that.’ Consultants can’t possibly remember everything about their patients’ health; they’re over-worked and we’re on this target-lead conveyor belt where the only phrase which links us all is ‘Next!’

I got told by the next rheumatologist that I needed to ‘get used to the idea’ that I would always be in pain. To that end I was supposed to have some kind of counselling from a psychologist at The Pain Clinic, but someone must have put the referral letter on the wrong pile because a year later, when I chased it up, nobody knew anything about it. Brilliant. Obviously by that time I’d talked myself into it and was resigned to the fact that at some point, I would probably opt to take my own life, because being in pain every day is not only mind-crushingly exhausting, but equally, really boring. Existing is not the same as living, and anyone in chronic pain will tell you that. We lose so much, bit by bit, month by month until there comes a point when we have nothing left with which to fight, or nothing left worth fighting for. I could sense that the consultant was more than ready to leave those four walls with their posters of the inner-workings of the spinal cord and get out on to the golf course; after all, dealing with the likes of me, with my incurable illnesses and barrage of questions can’t have been much fun.

Here’s the thing, though: when I asked about switching treatments, he shrugged and said, ‘It’s up to you.’ When I asked questions such as ‘Have any of your other patients switched? What is the success rate for that? Might I get side-effects I haven’t had on Enbrel? How long would I have to stop taking Enbrel before taking Humira?’ and stuff like that, he said, ‘I don’t know,’ ‘I’m not sure’, or ‘Maybe’. Seriously. If he genuinely didn’t know the answers to my questions, who did? How can he be in a job where he’s prescribing these drugs to patients but has no idea how they work? I was like, ‘Say WHAT?’ So the nurse convinced me. Good for her. I’ve waited 15 years for someone who could help me to actually help me.

My new rheumatology nurse. Maybe

Good nurses are brilliant, always have been

I asked for the Humira to be in pen-form, rather than syringe. I was fine with the injection for Enbrel and jabbed that needle in my thigh twice a week for 10 years like nobody’s business. I couldn’t even feel it most of the time, unless I hit a blood vessel. I liked the idea of the pen being much easier to travel with than the plastic cartons and you can line them up nicely in a little travel case because they take up way less room. I read all the instructions and decided to give it a go in my stomach. I’d never injected here, as I have so much scar tissue from my colectomy and J-pouch surgery. I held the pen, poised for action, pressed the tip and BAM!

Me just after the Humira pen burst into my stomach

Me just after the Humira pen burst into my stomach

ERMAHGERD IT HURT. The force of it was nuts, I felt like I’d been stabbed with a Biro filled with molten lava. It actually made me cry, and that’s not something I do very often, unless I drop my ice-cream or think about the end of Top Gear. I had no adverse reactions other than screaming my head off and crying. At the time I was in a lot of pain as I was at the back end of just having sold the house and sending its contents to France. My stress levels were through the roof, and I felt so rough I could barely walk around the house, let alone go out, for the first 12 days after arriving at my parents’ house. Fun times. Anyway, I started to feel better by the second dose, two weeks later. Again I pinged it into my stomach, again I screamed and again I cried. Really. I couldn’t figure out why it hurt so much when needles have never been an issue for me (unless someone is waving one in front of my eye, say). By the time I was ready to leave for a couple of weeks in France, I had requested that my prescription be changed back to the syringe.

Me with the Humira syringe. I need to get out in the sun, I think

Me with the Humira syringe. I need to get out in the sun, I think

So I get the syringe option now, and think, ‘Ha! I know you! You don’t hurt!’ but guess what? ERMAHGERD IT HURT. I didn’t scream, because the process wasn’t sudden like it is with the pen, but I actually thought I was going to pass out with the pain. I was properly sobbing with the pain. It was like injecting acid into my leg. Gautier looked up from the iPad and said, ‘Monkey, are you OK?’ as beads of sweat popped off my forehead and I apparently went as pale as talcum powder. This was 10 seconds of extraordinary agony as opposed to about three seconds of it with the pen. ‘This hurts just as bad!’ I cried, through a face full of hot tears, grimacing like someone who’s just discovered a rotten corpse in their bed. I drank a glass of water, stood up and then poured myself a glass of wine and drank that.

I’m due to inject again on Monday, and I’m properly dreading it. It must be something to do with the formula being pre-mixed, because with Enbrel, you have to put the powder in with the saline to mix it first. I’ve no idea why that’s the case, or whether I’m just going soft in my old age, but man, it’s awful. Thank God it’s only once a fortnight, but gearing yourself up for super pain isn’t easy. A bit like when the bloke who got stuck in the rocks in the American desert for 147 hours or something had to cut his arm off with a blunt penknife (if I said that out loud to Gautier, he’s say this: ‘Yes, monkey, it’s JUST like that. My God.’) I’d be interested to know if anyone else has made the same switch from Enbrel to Humira, and if they noticed the difference. I’d also like to be sent some edible gifts from anyone who hasn’t had to even consider taking biologics in the first place, because that means you’re really lucky, and I’m not. Seems fair, no?

The thing is, two months in and my pain has improved by miles. I’m waking up feeling COMFORTABLE. If you have scoliosis and spinal arthritis and fibromyalgia, you’ll know that it’s nothing short of a little miracle. I want to laze in bed all morning just because the level of pain I was in for the last 15 years meant I couldn’t wait to get out of bed, as the lack of mobility made everything worse. So that’s my news. I’ve got loads more, but I wanted to focus on that for now.

My tummy stuffs aren’t doing so well, which is a bit annoying as Humira is the treatment of choice for IBD. Gah. I’m in France at the moment, typing this on my laptop in the giant garden, sweating buckets despite being in the shade. It’s going to be between 32 and 38 – yes, 40 – degrees (that’s Celsius, by the way) over the next week. My stupid feet are already swelling up at the thought of it, and it’s only day one. Plus I fell on some rocks the other day so one of said balloon feet is all scraped, too. More on that next week; trust me, it’s quite a story. Have a lovely week, everyone. It should be gloriously sunny wherever you are, as long as that’s not Australia, Alaska or the Antartic. All the places beginning with ‘A’ apart from Andalucia, Africa, America… you get the idea. Bisous xxx

C’est La Vie

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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

 

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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!

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Pig’s feet. A treat, apparently

 

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

 

No Appointment Necessary

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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…

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