I'm a journalist, public speaker and the author of 'Mostly Cloudy, With Some Bright Spells'. I have a French husband, a ridiculous cat and some hideous diseases – ulcerative colitis, ankylosing spondylitis, fibromyalgia and scoliosis. Despite being in pain 24/7 I'm a relatively cheerful, mentalistic sort.
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.
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.
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.
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 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?
I talk a lot about living with ankylosing spondylitis, but I don’t talk much about my history with ulcerative colitis. Of course, I write about it at length in my book, but here, not so much. It’s coming up to 14 years since this aggressive, monstrous disease almost killed me, 16 years since my diagnosis, and given that I’m having bother with what’s left of my insides after years of thinking ‘I’m mended!’, it’s making me think, ‘when?’ rather than ‘if’ I will have to endure more surgery. I can’t bear to think about it, yet when I stop thinking about other things, it’s all I think about.
I had kept my colitis under control with steroids and by self-managing my diet and nutrition for almost two years, since diagnosis in 1999. However, because I was crippled with hip and back pain and unable to walk, my GP put me on anti-inflammatories. They certainly helped me to walk again, but the downside was that they exacerbated the colitis and I basically started bleeding to death within three days of taking the pills, barely conscious half the time, crawling from the sofa to the toilet 30 times a day. My GP seemed a bit concerned. I was a bit concerned. By the time I couldn’t lift my head off the pillow I reached for my mobile, rang my parents and said, ‘Er, I’m pretty sure I need to go to hospital’.
Once in hospital, things didn’t get any better; on day five it was announced that I’d be having emergency surgery to remove my entire large bowel in what’s know as a total colectomy. My parents were told to ‘prepare themselves’ as I ‘might not make it through the night’. My body was shutting down and I sure as hell didn’t have the ability to do anything about it. To prepare myself I asked for extra morphine and a Diazepam, waved goodbye to my parents with a fake smile on my face which of course, they saw right through, then cried myself to sleep.
Surgery was traumatic; I lost so much blood and was so gravely ill I had to be put back together in a real hurry. My bowel had disintegrated. The surgeon described it as having the consistency of blotting paper. If you’re wondering how an emergency total colectomy is performed, it goes something like this:
Slice open patient, right down the middle. Burn and cut large bowel from muscles and internal organs. Form ileostomy from small intestine. Lift out large bowel, which is falling apart and mainly just ulcers and blood. Dump on table. Panic about patient losing tonnes of blood. Wipe brow with back of arm. Turn up Vivaldi on the stereo. Pump blood into patient. Massage their heart when they go into shock. Staple patient’s torso back together sharpish. Hope for the best.
Things changed forever that day; not least because half my hair went white overnight when my body shut down, but because I’d suddenly acquired a loop ileostomy (stoma) for which I was totally unprepared for. I had also lost so much weight whilst slowly dying in hospital that bright red lump of flesh, which moved of its own accord, this monstrosity which was like a giant STOP button made of jelly, seemed to take over my body. I was so thin (I weighed 40 kilos, having lost 10 kilos from my regular weight) that it stuck out two inches from my stomach. I lost my mind in hospital; when I was diagnosed with post-traumatic depression I was promised some help, but it never came. Once I was able to eat real food (I say that in the loosest terms possible; this was a hospital, remember) and change my stoma bag myself (albeit crying, shaking and gagging the whole way through) I was released back into the wild, left to my own devices; somehow I was meant to pick up the pieces of my shattered life, a life which would never be the same again.
The thing is, up until the week of my almost dying I had never had the need to rush to the toilet, despite my colitis being diagnosed as ‘severe’ in the sense that the disease was right the way around my colon, rather than affecting part of it. I had never had stomach pains, never thrown up, didn’t have any of the symptoms which make people grateful for ending up with a stoma. To that end, I was utterly horrified at what had become of me, and while that feeling subsided a little after the first couple of months, it never truly went away. People would say, ‘Oh good, you’re better now’ and I’d say ‘No, I’m not better, I’m just not dead’. I couldn’t read a book, watch TV or listen to music for weeks. I was in a total state of shock; I barely uttered a word to my parents for a fortnight after leaving hospital, just saying ‘yes’, ‘no’ or ‘I don’t know’ on a loop.
I shook with anxiety the whole time. I was so weak from surgery and the dramatic weight loss, so sore from having my guts yanked out that just taking a shower exhausted me. I cried each time I had to change my bag, putting it off until midnight some days, simply because I couldn’t bear to look at it. I had such sore skin around it because I was allergic to the glue on the bag that blisters formed in two-inch deep circle all around the stoma. The spray I was given to help shift the glue from the bag stung as if someone was pouring acid onto my stomach. Let’s just say I couldn’t wait to get rid of it, and when my surgeon suggested J-pouch surgery which would rid of me of the stoma… well, I all over that idea.
Nine months later: I’m not going to lie, I actually had a worse time in hospital after that than I did when I was being fed through my veins and had a mouth full of bleeding ulcers. I lost a lot of blood again during surgery and fell into a critical condition, so I was sewn up in a hurry once more with only half the work done. Me and general anaesthetic are not friends.
I woke up with what’s known as an end ileostomy. Rather than it sticking out of my side like a big jelly button, it lay flat against my skin, more like a bullet wound. I won’t even tell you how I felt to wake up after surgery and be told that I still had my insides on my outside. There are none to convey the despair I felt. So what happened after that? Well, those of you who’ve read my book will know the answer to that. I had tubes going into every orifice possible; up my nose and down my throat, up my backside, into my groin, in both hands, in the crook of my arm, the epidural in my spine. It was utterly unbearable. Unless you’ve been there, you can’t possibly imagine what that’s like; all the while with burning pain, non-stop sweats, the inability to do anything for yourself.
I was let out after a couple of weeks, breaking all attendance records in desperation to get out. I actually leaving with an infection which the nursing staff missed. I knew something was wrong when I had a migraine, scorching hot skin and was throwing up, but I couldn’t stand another night on the ward next to old ladies with prolapsed bowels and dementia, so I said, ‘I feel OK’ and that was it, they let me go. I’d already called my parents that morning to say I was allowed home before the staff had even seen me. I’d made my mind up that I would just walk out of there if I wasn’t officially discharged. The stench on that ward was sickening; it’s no wonder I got even more sick from being there. I mean, who puts a patient who’s just had major surgery and almost died AGAIN, and therefore has huge wounds that need to heal right back on the ward where everyone else is sick? The billions of bacteria floating about in that hot, disgusting room, the room where the heating was on permanently, with no windows open and no air didn’t bear thinking about.
Things didn’t go smoothly; a couple of hours after arriving home from the hospital, my bag began to leak. I felt the hot, wet burning sensation (pure stomach acid with a little breakfast) trickle into my lap and asked my mum to help me to the toilet (I was so weak and so sore I could barely shuffle to the toilet at this stage). I couldn’t figure out what was wrong. My mum rang the hospital, and they said, ‘Oh right, we must have sent her home with the wrong bag, sorry about that.’ Brilliant. The stoma nurse had applied a bag suitable for the loop ileostomy, not the end ileostomy. I had a box full of the wrong bags, and here I was, sitting naked in the shower, stomach acid and the remains of my toast dripping down my legs, in floods of tears and complete panic.
The hospital said they would send a district nurse around the next day with the correct bags. I spent the night with an old towel wrapped around my middle, on top of two more towels, on top of my bed, with a blanket on top of me, in terrible pain, exhausted and completely bewildered. I wanted to die. I had nothing left. I was so tired.
Meanwhile, the infection I picked up in hospital was serious enough for my GP to insist I went back in. I insisted that seeing as I got the infection from there in the first place, there was no way I was going back to be exposed to more shit (both in the literal and metaphorical terms). I was instructed to go to the local hospital in that case, where I was born. I said, ‘Won’t it be funny if I die there as well?’ which wasn’t funny at all. I refused to go. I was prescribed super-strong antibiotics and managed to ride it out over the next few days. My poor parents went to bed each night wondering if I’d still be alive the next morning. I didn’t like to tell them that I was wondering the same.
Moving on: six weeks down the line and I’d got a handle on the new stoma – I still hated it and was still covered in blisters and sores, don’t get me wrong – and I’m walking along a leafy London street on a hot summer’s day to meet my boyfriend (said boyfriend is an ex-boyfriend who came back into my life just at the right time). I thought him pretty brave to pick up the pieces; he simply loved me the same as he always had; maybe even a bit more because I was kind of vulnerable and needed taking care of, something completely alien to me before this point. So, I’m walking. I’m wearing a knee-length denim skirt, vest top, wedges, sunglasses. All is as well as it can be, I thought.
Well, that was a BIG f*cking mistake.
Hot liquid ran down my leg. Hot, dark green liquid. A man was walking towards me; I put my hands over my stoma and stood still, squashing my legs together, hoping he’d pass quickly. He smiled, I smiled, he didn’t notice. I was alone again. I hurried, taking my phone out of my bag and calling my boyfriend who was just leaving work to meet me at his flat.
‘It’s me,’ I said, walking so fast now I was afraid I was going to trip up, ‘My bag is leaking, it’s leaking everywhere. I’m in the street and it’s all running down my leg. Please come and get me.’
I carried on walking, clutching my stomach, trying desperately to stem the flow of stomach acid and breakfast. I had no tissues on me (seriously). I was spending the weekend at his place so had brought along another bag so I could change it, but it hadn’t crossed my mind to bring a spare disc (the hard plastic bit which goes against your skin before the bag goes on top), nor had I brought a full change of clothes, other than underwear and another vest top. My skirt was all I had, and that was fast becoming a hot mess.
My boyfriend met me at the end of the street. I was in tears, utterly embarrassed and ashamed. His flat mates were at work, thank God. I shut myself in the bathroom and stripped my clothes off, throwing them into the bath. I showered myself off. The stoma went quiet, finally. My boyfriend, by now, was driving around London on his moped desperately trying to find a chemist who had some stoma kits in stock. Meanwhile, I was sitting on the loo clutching kitchen roll to my stomach, exhausted and panicking.
It turns out the chemists don’t stock stoma kits. I hadn’t known that. He tried four places before ringing me, and now he was in a panic. His next stop was the hospital (this was all in London’s rush-hour traffic, by the way, so an hour had already passed) who said they didn’t give out stoma kits either. He stressed that this was an emergency, but they were having none of it. Their answer was that I had to go home and ask my GP for a prescription. ‘She can’t go home, she’s leaking everywhere and she lives in Kent, not London!’ he exclaimed, exasperated by now. He went back to the chemist and bought what appeared to be the entire stock of bandages and tape.
While I patched myself up as best as I could he put my clothes in the washing machine and made me a cup of tea.
I wore one of his t-shirts and stayed in the bathroom in case it leaked again.
It leaked again.
I was hungry now, but afraid to eat because that would set the stoma off again. In the end we went for dinner around the corner, me in my freshly-laundered clothes, covered in tape and bandages. I also had tissue stuffed around my knickers in case it all kicked off again. We ate, we went back to the flat, I toyed with the idea of going home but I was too exhausted, and it was too far. Our whole weekend was ruined. I’d ruined it.
I spent the night lying next to my poor boyfriend, flat on my back, only now with a layer of Clingfilm over the bandages along with a towel on top of me, and one underneath me. I didn’t sleep a wink. I went home the next morning, praying that I’d make it through the train journey without another incident.
At the time, there was no social media, no Facebook, no support other than traditional newsletters and a helpline I never took advantage of. I never saw anyone else with disfiguring scars, with a bag, never read about it, nothing. If this happened now, I’d probably stop to take a photo of me sitting on the loo with bandages all over the place; I’d probably have taken a photo of my stoma, or asked my parents to document my decline in hospital. I have nothing to show for the horror I endured, apart from some very well healed scars. The long scar is actually two scars, one from each operation, very close together. It goes an inch above what you can see, and an inch below. Kim Kardashian would have a field day on Instagram with this shit; me, I just put my clothes on and don’t think about it.
At that point I vowed NEVER to leave the house without a spare disc, bag, wipes and change of underwear. That’s something everyone with IBD learns; sometimes the hard way. Since I had J-pouch surgery, I’ve not had to worry so much, but now that I’m not well again, it’s back to tissues, wipes, other stuff every time I leave the house. So, the moral of the story for anyone who’s just had stoma surgery is this: dudes, be prepared.
As Clarence says in True Romance, ‘It’s better to have a gun and not need it than to need a gun and not have it.’
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:
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.
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.
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?
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:
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:
Looks perfect for a midnight stroll, doesn’t it? That’s what I thought.
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.
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.
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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.
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!
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:
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:
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!
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.’
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.
Anyway, 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.
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…
My book is available from Amazon (worldwide) as an eBook or paperback. Here’s the link to the Kindle version; if you’d prefer a book made of paper just type the title in under the ‘Books’ section and it’ll pop up. Magic!
I thought I had some really mental ideas and a few sensible ones, and was quite pleased with how it was shaping up. Then I thought about how much pain I’m in and I realised that even the ideas I had imagined were sensible are, for me, actually mental. Because all the things I want to do involve not just leaving the house, but leaving the country.
All I ever wanted to do was travel. As a child in the ’70s my best friend Jacki and I would ride our bikes round and round the cul-de-sac we lived in, pretending that we were cycling to Australia. My mum would send us off with an apple, a packet of Um Bongo and a Penguin biscuit and we’d amuse ourselves all day, literally going round and round in circles until we were called in for our tea. At one point I lost a tooth in my apple and still kept pedalling, blood pouring down my chin and part of my jaw in my snack, but I didn’t care, I was GOING TO AUSTRALIA. Come to think of it, after drinking Um Bongo it’s no wonder I had too much energy and no sense.
It was no surprise to my parents that when I hit 17 I applied for a Green Card to work in the USA. I wanted to work as a secretary in an advertising agency in New York. I dreamed of meeting Cagney and Lacey, or even just one or the other. I didn’t get the Green Card in the end, which is probably just as well; I’d probably have been killed by a mugger or a taxi within two minutes of getting off the plane.
Instead I got a job in an advertising agency in London. It was a pretty good second best. When I was 19 I decided I wanted to really see America. I saved up my salary and found a travelling companion through an advert in a magazine. I’m not kidding. He was 21 years-old, handsome and a Tottenham fan. He was also a complete stranger, but I reckoned on him being as safe a bet as any. We travelled around the east coast of America for almost three months; starting in Florida and working our way up to New York (we stayed at the YMCA. They lie in the song; it’s really not fun to stay there at all) and then Chicago. We’d planned on staying in grotty motels but when we saw the grotty motels – moreover, the hobos and hookers who inhabited them – we decide to upgrade. I remember ringing my parents once a week from a pay phone to let them know I was still (just about) alive. In an age with no email or mobile phones they must have been out of their minds with worry the entire time, and I still haven’t forgiven myself for what I put them through, even if they say they’ve forgiven me (I think they’re lying).
From then on all I wanted to do was have adventures. I took two trips to Thailand and three trips to the States (driving through Los Angeles, San Francisco and Las Vegas at 21 years-old with my best friend. We also drove through Death Valley. With no water. Really). Aged 18 I flew off to Dallas to spend three weeks with an American girl and her family whom I’d (purposefully) befriended when she attended my school for a year. Suffice to say, my desire to live and work on another continent (not Africa, though, ugh) never waned. Even my relationships were long-distance. I was never going to settle for a job, a boyfriend or a life in the town I grew up in; I always felt was destined for bigger things.
When, aged 27, I was sent to cover the Grand Prix in Melbourne for Loaded magazine, I decided there and then that Australia was where I wanted to live. When I got back to London I contacted some magazine editors in Sydney and told my friends and family that I was planning on leaving the UK as soon as I had some freelance work or a features desk job set up. Mum and dad said, ‘We knew it,’ and I said, ‘Yeah, but you do realise that I might not come back?’
Those of you who have read my book will know that years later I almost went to live in a Florida trailer park with a man I met for 30 seconds in Las Vegas. It’s fair to say that I’m reckless, impulsive, overly-optimistic, massively naive and at times, completely stupid, but I’ve always thought that I’d only regret the things I didn’t do, reasoning that if I didn’t like a place or a job or even a husband, I could always undo things and go home.
I have no doubt that if I hadn’t been diagnosed with ulcerative colitis shortly after making the decision to move to Australia, I would be wearing Factor 150 sun block whilst feeding my pet komodo dragons and kangaroos in a sunny garden in Sydney. It wasn’t just the diagnosis that turned my life upside down; it was the speed with which I was then crippled by Ankylosing Spondylitis and, within 12 months, having emergency surgery for toxic mega colon, waking up to find myself with an ileostomy that I hadn’t bargained for.
I have been in pain for 14 years – give or take a few good months in the early days of treatment – and I’ve been on immune-suppressing biological therapy for a decade. I take crazy pills for brutal insomnia and, if I’m really honest, (functioning) manic depression, along with a cocktail of supplements, potions and painkillers. My life revolves around MRI scans, colonoscopies, X-Rays, blood tests, stool tests (ugh, I know) and gastroenterology, rheumatology and doctor’s appointments. It’s easy to see why I never made it out of the UK. I’m bound by my drug – I’ve yet to find out how the hell I would obtain it in another country without paying £12,000 a year for it – and bound by my lack of work (for every book I sell I make just £2.71) which is caused, of course, by me being ruled by these conditions.
I often hear people say, ‘I won’t let my disease beat me!’ triumphantly and resolutely, as if we are in control of diseases, rather than them being in control of us. In turn, people praise them for being ‘brave’ and ‘positive’. I’m all for that, and I’ve been saying it myself for over a decade, despite IBD almost killing me, but if you have several life-threatening conditions rather than just one, the odds are that those diseases will eventually beat you, no matter how brave or inspiring you are. I’ve never given in to my conditions, never spent the day in bed even when I’m in agony or when I feel on the verge of tears 24/7. I’m the most ‘can do’ person you’ll ever meet, despite often crippling pain, but I’m sure as hell losing the battle lately and there’s not a single thing I can do about it. My diseases ARE beating me. It’s a fact. It’s like saying, ‘Ha! I won’t let leprosy ruin my chances of becoming a world-class pianist!’ and two weeks later, after your fingers have fallen off, someone says, ‘How’s that working out for you?’ and you saying, ‘Yeah, not great’.
One after another, every life-threatening condition I have has taken a chunk out of my dreams. I lost my career to it. I lost my colon to it. I lost the ability to dance, to eat the food I love, to travel, to sleep, to even sit comfortably on the sofa. Bit by bit, year by year, something else is taken from me. I barely recognise myself from the person I was 15 years ago; then I was at the peak of my career, about to start a new life on the other side of the world, and now I’m essentially a reluctant housewife struggling to get recognition for my writing. These diseases are relentless in their pursuit of me, tireless in their determination to stop me from doing the things that I not only love, but seriously NEED to be doing to say that I am living, rather than simply existing.
I have spent the past 14 years in pain, both physically and emotionally, clinging on to every last shred of hope that I would stay on top of things, that I could keep a lid on it all. I had heart surgery at four years-old. I’ve had my bowel removed. I have scoliosis which is getting worse year on year; I have fused discs and crumbling discs and wearing-away hips. I have fibromyalgia, and now I have Crohn’s Disease. I’m more terrified than ever. I know that I’ll probably have to have my J-pouch reversed and have an ileostomy again. Not only did I never come to terms with the ileostomy from a physical point of view (it repulsed me so much I cried every single day for nine months) but my skin was so sore from the glue on the bags -I had angry, weeping blisters topped off with burnt skin from the spray needed to remove the glue from the bag which I was allergic to in the first place. I can’t go back. I can’t live like that, with pain from every part of my body; my skin, my muscles, my bones… I can’t. Then again, how can I avoid it?
‘I could actually do with being hit by a piece of debris from a plane crash, or falling into a fire pit, or down a well, or being attacked by a polar bear, or standing next to a volcano as it erupts,’ I said to Gautier last night.
‘Don’t be silly, monkey,’ he replied. ‘Don’t say that.’
It’s true. A freak accident would be a blessing. It would get things over with. It would actually mean that these conditions didn’t kill me, something else did, and in that sense, I’d have won. I’d go nuts to have King Kong or Godzilla descend on Brighton and scoop me up, then drop me from a great height into the sea. Maybe I could go on a balloon ride and just leap out, or do a dive in a shark cage and just open the door and say, ‘Come and get me, f*ckers!’
So yeah, that’s where I stand at the moment. I think you can safely say that I’m ‘not in a good place’ in the emotional sense. Put it this way, I put my pyjamas on when I came in and it was only 2.14pm. Gautier’s gone to France for 11 days, so it’s just me, Pantouf and Squeaky. Plenty of time for me to work on Plan A – The Bucket List (clues: Italy, new hair, trousers, tarantulas) and once that’s done, Plan B – stuff about funerals. Before you say, ‘Don’t be so dramatic/don’t be daft/you’ll be fine, remember this: I am riddled beyond belief with four life-threatening conditions; my body is failing me as is, finally, my will. Judging by the rate that my remaining intestine and vertebrae are disintegrating, I have no way of winning this one, even with all the PMA (that’s ‘Properly Mental Attitude’) in the world.