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Got yourself a new ileostomy? All I can say is be prepared!

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

To buy the Kindle version of my book, click here

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’.

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Going back to this place for outpatients appointments got me in such a spin I had to change hospitals this year

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.

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If only I’d had my own room!

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.

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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 wish I'd looked this good

I wish I’d looked this good

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.

The surgeon did an amazing job. I looked horrific for months; a year later and they had begun to fade

The surgeon did an amazing job. I looked horrific for months; like I’d been mauled by a bear. A year later the angry, raised, red scars began to fade

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.’

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Damn right, Clarence

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Remember, Remember, I Really Hate November

 

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

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

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

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

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

Yes, the Chanel is medicinal. I don't drink it, but no matter how awful I feel, I put some on

Note the bottle of Chanel. Even when I feel at my worst a spritz of perfume is top of the list

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

Yes, you read that correctly.

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

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

 

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‘Got any chips?’

The only nice thing about November is how the leaves look for about a day, before they turn to mush

The only nice thing about November is how the leaves look for about a day, before they turn to mush

 

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

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

Other than to visit sheep.

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

 

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Some books, yesterday

 

It Takes Two To Make A Thing Go Right

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

To buy the Kindle version of my book, click here

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

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

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

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

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

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

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

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Formula One, Ulcerative Colitis, J-Pouch Surgery, More Tom Cruise

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

I thought I’d write a bit about my experiences with ulcerative colitis today. I’m always banging on about Ankylosing Spondylitis or fibromyalgia (or Tom Cruise) but I never really mention my experiences with ulcerative colitis. I guess it was such a traumatic, horrendous time that I don’t really like to think about it, let alone write about it.

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I can’t stand how fit he is. See my previous blog for what happens when I spend all morning salivating over Tom Cruise

Those of you who have read the book will know that I was diagnosed with severe UC in 1999, despite having none of the telltale symptoms aside from losing blood. I had no cramping, no rushing to the loo, no weight loss, nothing untoward which would have made me think ‘Blimey, what’s going on here?’ I felt extremely tired, and definitely didn’t feel ‘right’, but that was it. I was working for men’s magazine Loaded at the time, reporting on Formula One races. My job, although ridiculously enjoyable, was quite stressful. I was travelling a lot and because I’d asked to hang out in the paddock and pit lane with the Jordan F1 team rather than hang around in the press centre with other journalists ( I am a bit cheeky like that, but hey, so what), things were even more hectic.

Here’s the rub: I kept the same hours as the mechanics. This meant waking at 5am to be at the track by 6am. We’d have an amazingly delicious breakfast in the paddock at 7.30am, and break for lunch at 12pm. All day I’d be ‘helping’ them in the garage – I learnt where to find nuts and bolts to hand to the mechanics who were fixing the racing cars. I cleaned both drivers’ F1 cars all day, every day (Damon Hill would promptly drive it around the track a few times and get it all dirty again, much to my disgust).

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‘Oi! I’ve just cleaned that!’

This went on until midnight and then we’d head back to the hotel. It was no wonder I was exhausted, but I just ploughed on. I really had no idea how ill I was; inevitably the diagnosis came as a complete shock. While I managed the disease pretty well for almost a year, the prescribed steroids played havoc with my skin, my hair, the size of my face (it ballooned) and of course, my mood. I was not much fun to be around.

I changed my diet, cutting out dairy and wheat and that helped a little.

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Milkman: ‘One pint or two, love?’
Me: ‘None!’

In fact, I’d recommend that anyone with UC or IBS do the same. It’s not easy, and I wanted to tear out my (dried out by steroids) hair half the time, but it helped. It really did. I was managing it as best as I could, and thought this would be how I’d get along permanently, maybe with some bouts of remission and some bad flare-ups which would probably be triggered by stress.

So when I started to get hip and back pain alongside the UC symptoms, I was not only puzzled, but devastated. I was prescribed various painkillers which didn’t really tackle the pain. If they did, they’d make me so nauseous I’d be in tears. I could barely walk most days and had to spend a lot of time at my parents’ house (60 miles from my flat in Brighton). When I wasn’t with them I felt vulnerable, lonely and scared. My health declined at such an alarming rate that I lost my job, then my ability to drive, walk, sleep, the lot. In October 2001, having gone to my doctor on crutches, in tears, I was prescribed an anti-inflammatory tablet to take at night. By morning, my pain had subsided. I took these tablets for three days, when suddenly I experienced excruciating stomach cramps and so much blood loss I thought I was going to die.

I wasn’t wrong.

I was going to die.

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‘Right, who’s next?’

I was hospitalised and put on a steroid drip. It didn’t work. I wasn’t getting better, I was getting worse. Five days after coming into hospital I had emergency surgery to remove my entire large bowel. I woke up with an ileostomy (an ileostomy is a surgical opening constructed by bringing the end or loop of the small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external bag stuck to the skin). I spent two weeks recuperating, and although my body began to heal, my mind didn’t. I was in complete shock. The anti-inflammatories had helped with the arthritic pain alright, but had exacerbated my bowel problems and caused massive intestinal bleeding. I had toxic megacolon and pretty much looked just like this, only a bit older and with longer hair. And a somewhat panicked expression. And loads of tubes in my wrists and my neck.Image

I had a second bout of lengthy, traumatic surgery to reverse the ileostomy a year later, but it didn’t go well. I lost so much blood during surgery that the surgeon had to sew me up swiftly and couldn’t complete the job. It was touch and go in recovery as my blood pressure went through the floor. After that, another 15 days in hospital, and then, sent home with a serious infection. Brilliant, eh?

I went back again for the third installment a while later; that was a resounding success. I became the proud new owner of an ileo-anal J-pouch. For those of you not in the know about such matters, this is a surgically constructed internal reservoir; usually situated where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching or stapling them together. The internal walls are then removed thus forming a reservoir. The reservoir is then stitched or stapled into the perineum where the rectum was. Bingo!

After surgery I was told by the dietician that I should ‘bulk up’ my diet with rice, pasta, potatoes, white bread and general starchy foods, whilst cutting down on fruit and vegetables and anything with a high fibre content. I was told that my small intestine might find it a bit hard to digest raw vegetables and fruits, and that if I wanted a ‘good output’ (that’s pooh, to anyone uninitiated) I should eat foods which basically clogged up my insides. Lo and behold, the most satisfying, porridge-like and purposeful output came after a plate of my mum’s delicious steak pie.

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Mum’s pies are actually a bit bigger than Dan Dare’s

When I ate a salad, though, I passed water and leaves. Still does, with my J-pouch. It looks like pond water, but without the fish and the abandoned shopping trolleys.

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A lake, yesterday

If you’re wondering how it’s all working 12 years on, I’m about to tell you. If you’re not interested, now would be a good time to go and have a cup of tea or water the garden. I’ve had a few scary moments. Blockages, to be exact, where scar tissue has reduced the intestinal passage, making it a bit of a job for food to go through it. The intestine twists and turns like a backed-up hosepipe, desperately trying to push whatever is stuck out of the way. The pain is unbearable.

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Same as this, only flesh

I’ve had six or seven bad episodes like this, four of which have ended up with a trip to A&E and an overnight stay in hospital with a nasty tube up my nose, down my throat and into my stomach (which, incidentally, did nothing). Twice I’ve thrown up, then been to the loo (the vomiting action seems to shift stuff) and honestly, it’s like a tsuanmi. The pressure build up is insane. WHOOOOSH! I’ve had blockages in my actual pouch which makes me feel as though I’ve swallowed a cricket ball, and I hang on until I can’t breathe before calling an ambulance because oddly enough, being on the same ward where I almost lost my life twice is something which sends me into a blind panic.

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Having AS, I get a lot of people telling me I should be on a no-starch diet. It probably works for some people who have AS and not AS and a history of inflammatory bowel disease. But I have both, and what works for one condition naturally seems to exacerbate the other. With fibromyalgia added to the mix, too, it’s no fun trying to work out what I can do, if anything to feel better either in my tummy, my back or the rest of me.

I’ve been around long enough, and am curious enough, to have done all the research possible on all my conditions. As a journalist, it’s in my nature to ask questions and seek out reputable advice. The stretches which work for AS pain cause fibro pain. The diet which might reduce inflammation would cause no end of intestinal blockages, and they are way more terrifying than being crippled. Really.

The thing is, I eat a very healthy diet. I always have done, but now it’s even better.

I start the day with organic (starch free!) yogurt with an apple (diced, otherwise it’ll get stuck somewhere) and blueberries, and sometimes some walnuts. I chew things about 3948 times, save for the bits that slip down my throat when I’m not concentrating or when Tom Cruise appears on the telly with his top off. Mid-morning I might have a bit of walnut and rye bread with organic peanut butter. For lunch today I had a hard-boiled egg, some Parma ham, a tomato salad (chew, chew, chew, chew, chew) and some pea shoots (chew even more!). Dinners tend to be baked or grilled fish with vegetables and couscous (starchy, but my favourite accompaniment and great for porridge-pooh) or a bowl of fresh tagliatelle (I am yet to make my own pasta. When I find room for a pasta machine, I shall) with homemade pesto or a nice juicy rare steak with green beans and new potatoes (or even McCain’s frozen fries, although we only have these about once a season – ‘it’s spring, let’s have chips!’ which is a bit sad). Or roast chicken and green beans. Or a tuna nicoise salad, a chicken salad, blah blah. I do like an ‘at home’ picnic in the summer. Here’s one I made earlier:

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I make my own biscuits when I fancy them, bake my own cakes (I have never bought a cake from a shop in my entire life), I don’t drink fizzy drinks, diet drinks or eat low-fat foods (why do people not realise that they’re full of sugar and chemicals and shit?) and I have a Coke (only if it’s in a bottle, mind) as a treat about once a month – if that – when I’m out and really freakin’ fancy it. I don’t buy fruit juices and only drink organic milk and organic, plain yogurt with no added anything other than a pot.

Sometimes Gautier and I will wolf down a whole chocolate twist on a Sunday morning, washed down with a coffee on the beach. I’d be a fool not to. I’m in so much pain ALL THE RUDDY TIME that if I didn’t have these little food pleasures to look forward to, I’m sure I’d die of frustration or sadness or be the first person whose death verdict was: ‘Denial of treats’. A bit of this never goes amiss, either. Best chocolate ever.

Another treat with nuts in it. I am a bit of a mascochist, I think

Another treat with nuts in it. I am a bit of a masochist, I think

There are no pastries in this picture, but Pantouf's in it. He's brilliant

This isn’t Gautier, this is Pantouf. We ate our pastries and now we’re soaking up the rays. Brills!

Anyway. If you’re still reading (well done, you!) and you’ve recently ended up with an ileostomy or ileo-anal J-Pouch (worst name for anything, like, EVER) then here’s a bit of advice from someone who knows what they’re on about. Chew your food. Eat real food (by that I mean nothing processed). Stop drinking fruit juice, it’s acidic and full of sugar. Drink fizzy stuff at your peril. Maybe don’t eat regular takeaways or fast food. Just an idea.

When you put rubbish into your body, it’s like filling your car’s petrol tank with tar instead of Super Unleaded. How can you expect your body to thank you if you don’t treat it properly? I’m not saying you’ll be cured – you won’t – but your symptoms might become less severe, your flare-ups less frequent and your health in general will improve. It’s not rocket science.

For the record, here are the foods which I can’t digest and which cause me no end of bloating/cramping/blockages/crying on the floor followed by last-minute trips to A&E:

I’m writing this in the order that they’re most offensive:

Mushrooms (I love them but it’s not worth the hassle)

Sweetcorn (no surprise there)

Celery (no big loss, to be honest)

Pine nuts (my favourite hamster food)

Pumpkin seeds

Sunflower seeds (basically, seeds)

Olives

Puy lentils

Chick peas

Raisins

Tomato skins

Raw carrots (oh God, this was blockage number three, the worst. I now grate them)

Raw anything if it’s not diced or grated, to be honest

Bean shoots (one got tangled up in my stoma and came out hole; it was both disturbing and fascinating to watch, less fun to feel)

Any kind of beans – baked beans, kidney beans, whatever beans. They seem to bloat me like crazy, as does beer. Shame, I love a nice cold Hoegaarden. Bah!

Salad leaves (particularly rocket, it’s a right bother!)

I also had oysters when I had my ileostomy. Probably the most stupid idea I’ve ever had. They pushed their way out of my stoma WHOLE. Not advisable. Apart from banning mushrooms, pine nuts, sweetcorn, seeds and lentils, I will still eat chick peas, raisins and olives. But I’ve learned to concentrate on chewing until they’ve practically dissolved, to drink quite a bit of water during and afterwards to help it all along and to grate or dice or finely slice anything fibrous such as carrots when raw. In fact, I don’t really bother with them. If you’ve got a stoma rather than a pouch, then anything wheat-based will fill your stoma bag with air after about three seconds. Beer is the worst offender. Fish and eggs will STINK THE PLACE OUT. It’s true. I stopped eating both when I had my stoma unless I knew I would be at home for a few hours, and even then, I would wail ‘WHY? WHY?’ at the stink of it all. Spicy foods might also aggravate things a bit. If you like a laugh, eat some cooked beetroot and wait an hour.

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I Googled ‘stinky fish’ and this came up! Seriously!

If your output is watery, you need to steer clear of fibrous foods and bulk up on – starch-free enthusiasts look away now – rice, pasta, potatoes or bread. Trust me. It works.

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I honestly think this is the best plate of sort of food imaginable. Oof!

Whenever I go to someone else’s house I try to remember to take a small box of matches with me to alleviate some of the putrid, compost-like stink after I’ve had the misfortune to need the loo.

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Compost is minging, as is my so-called pooh

I also use those moist wipe toilet tissues, which were actually invented around the same time as I had my pouch. Thank you, toilet tissue people, for pre-empting my needs. Little tubs of Vaseline Aloe Vera are also a delight. I don’t need to tell you what they’re for. And I wouldn’t be without Andrex toilet paper, either (hey, Andrex! Do I get a free roll for that? Or better still, a free puppy?) Anything else is like wiping your backside with sandpaper because of the high volume of stomach acid in our stuff that comes out. Stupid acid!

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‘Would you like a sheet of this, madam?’

So. I hope that helps if you’re bothered by UC, have just had or are about to have surgery for either an ileostomy or a J-pouch. I hope it also goes some way to explain why I am not about to embark on a low-starch or stupid bloody raw food diet. I hope that also explains why I get cross when people with fibro or UC or AS say, ‘I have AS/UC/fibro, it’s not that bad’ because until you have all three conditions, plus two scoliosis in your spine, until you have  had traumatic bowel surgery not once, but twice and spent weeks in hospital fighting for your life, and until you’ve had heart surgery and lost everything to boot, you have absolutely no right whatsoever to tell me what’s bad and what isn’t. And if you don’t like reading about pain and llamas and Tom Cruise and compost and chocolate and Formula One cars and mashed potatoes, don’t read it. Easy!

Next month – what happened when I stopped taking Enbrel for a few weeks.

*Clue – I’m back on it. Doh!*

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