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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.
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).
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.
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.
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.
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.
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.
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.
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.
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:
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.
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)
Sunflower seeds (basically, seeds)
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.
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.
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.
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!
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!*