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.
If you’ve read the book, pleeeeeease hop by Amazon and leave a nice review. If you enjoyed it, that is. Thank you.
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).
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.
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!
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.
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
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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!
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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:
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:
Here’s wishing you all a lovely Christmas and a Happy New Year
from the godmother of the best twin girls (!) ever!
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:
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?
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.