Alida Baxter

Renowned London journalist and author

View from Soho,

Irritable Bowel Syndrome:

A Growth Industry

alida baxter

I've alluded elsewhere to my IBS, but now it's so widespread it's virtually compulsory, I've decided to share my experience. I'm not saying it's made me testy, but … You know when the Alien erupted out of John Hurt? And I'm supposed to be sympathetic, am I? He got rid of it!

Does anyone else remember when no-one had heard of Irritable Bowel Syndrome? People had indigestion (a friend of my mother sucked industrial quantities of Rennies), or constipation, which was taken as seriously as a mortal sin. The precautionary method in my home was a weekly dose of liquorice powder, mixed with water to make a liquid so vile it had to be good for you. Other families favoured Andrew's Liver Salts, or Cod Liver Oil – you weren't allowed to actually get constipated, because that would have been too dreadful. The point was to avoid it, like being vaccinated against smallpox.

When you were very small you were given gripe water, which I loved so much I had to be weaned off it, like a Victorian baby off gin; little wonder, really – when I was small it contained alcohol! And of course there was travel sickness (I could even get sick on trains and buses), but that was about it.

I grew up, and threw up if I drank too much, and knew people with stomach ulcers, for which the cure was a bland diet and, if that didn't work, an operation. I was put on the bland diet at one time, and lived on tapioca pudding for six straight weeks, after which I was very white but pronounced cured, and could eat anything. But I still didn't know much about my colon, except that it was there, along with my stomach and all those other bits we'd drawn diagrams of in Biology Lessons.

When a friend had a baby I heard about colic, as did she and her husband. Three months of screaming, she told me, and she'd rather go through the birth every day for three months than one more night of the baby's colic.

And I met a young woman who'd had colic only recently, and still paled at the recollection. “It was agony !” she said. “No wonder they have to shoot horses!”

So I'd heard of it, and knew that it happened in your digestive system, perhaps like an ulcer, but beyond that my ignorance was about the same size as my lack of interest. Until it happened to me.

I went on holiday to the best and most expensive hotel in Madeira , and after my first meal was doubled up in such sudden and horrific pain in my side that the terrified man with me thought my appendix was bursting and rang for a doctor. No, not a burst appendix, I had colic, precipitated by something I'd eaten – food poisoning could affect your colon in this way.

I'd travelled widely in the preceding years, eating everything from oysters and T-bone steaks in Australia to unidentifiable commodities in a Singapore car park, and had never once had any kind of internal upset. Now I'd come to one of the world's greatest hotels and this had happened! I took what I was prescribed and lived on tea and Madeira cake, but I still had colic when I went home. Referred to a hospital gastroenterologist, I was examined and told to eat bran.

I couldn't know that we were at the crest of the great “bran's the answer” wave. I wanted to eat green beans, which I adored, but that drove the colic crazy – it was like being attacked in the gut with a chainsaw. No, I should be a bit careful, but whatever I didn't eat, what I should eat was bran.

Let me break it to you: bran is like wood shavings. If it's in something that's baked or cooked in some way, such as bread or biscuits or a breakfast cereal, it's disguised enough to be perfectly palatable, and tamed sufficiently for most human digestive systems. But swallowing it raw? Even when given to horses it used to be made into a warm bran mash, and nowadays there's a big question mark over the possible ill effects on the horses if you give it to them at all.

Yet I was told to take quantities of the stuff, raw – sprinkle it on cooked food, perhaps, or if that scratches your throat (which it did) put it in water or milk and swallow it that way. And I could hardly meet anybody who wasn't being told the same thing. “Bran!” groaned a friend, who subsequently turned out to have bowel cancer. “Bran!” groaned someone else, who'd only gone for an estimate, because he suffered from wind.

People who went to health farms were faced with bran as a delicious addition to the amazingly priced nothing on the menu. And lost weight rather than eat it.

But neither I nor anybody else I knew had it explained to them that bran, cooked and digestible and in small, reasonable quantities, is a cure for constipation. Uncooked it was such rough roughage that my shocked colon sent it rattling through my system in an attempt to get rid of it as soon as possible, together with everything else. And quite why this was supposed to be a good idea in my case, or that of anyone else I met, I have no idea, because none of us were suffering from constipation, and I had colic. But I went on spooning the raw bran in, because I'd been told to, and by a gastroenterologist no less.

From time to time, and for no reason discernible to someone so ignorant, I had such terrible attacks of colic that my doctor had to prescribe medication that stopped all movement from the stomach down, but mostly things seemed OK. It was purgatory to choke down the wood shavings after a delicious cream tea, or mint choc chip ice cream, but I obeyed orders, and did.

Several years passed, still with the regular attacks of colic, and then something weird happened. Whenever I ate, and particularly in the evening, I swelled till I looked pregnant. It was painless but strange. I'd go to bed with an alarmingly huge stomach, and wake in the morning flat and normal, and measure my waist and find it back to 24 inches.

When the swelling got to the point where I thought I might burst, I went to my doctor, had conversations about hormone levels, was given clutches of prescriptions, and finally sent back to the gastroenterology department.

Here I met a consultant who didn't like anything but my bran intake – at least I was doing the right thing about that. He made eye contact with his files but not me, wrote yet another prescription, and I was given an appointment to return in three months. The medication changed nothing, the bran was still awful, and after three months I was swelling in the afternoon as well as the evening.

This time I was seen by a young man who made the consultant look like Santa, and had apparently trained under some totalitarian regime. “Don't speak,” he ordered, “except to answer my questions! You are only the patient – I am the doctor!” The questions were few, from which he can have gathered little, cutting off any explanation with a demand for my silence, but then he wanted to make an examination and called for a nurse, to whom he was equally intolerable.

Already seething, I didn't enjoy being on a couch while he was bending over me and, from the feel of it, putting yard after yard of a chimney sweep's brush up my interior. Even a peasant can revolt: “I may only be a patient,” I yelped, when the sweeping got somewhere near my tonsils, “but I don't have to earn my living looking up people's back sides!”

The nurse snorted, which wouldn't have mattered, but then she snorted again. She lost it completely. I don't know which of us was responsible, but our tormenter's nerve suddenly failed him. He let me get up, gabbled that I had air in my system and should be X-rayed. And continue with the bran! And he ran out, leaving me with the nurse who was holding on to the couch by now so as not to fall down.

The X-rays indeed showed only air but, still suffering from alternate colic and swelling about which nobody could seem to do anything, I began asking for advice from anyone I could think of, and spoke to a girl in the local health food bakers, where I bought the flour and yeast to make my own bread. “Have you tried giving up anything with wheat in it?” she asked me. “I had to, for a while – I'm around flour all the time and I had some problems like yours.”

Wheat? If I cut that out it meant no more delicious homemade bread, but it also meant no bran … I weighed the options and tried. And my stomach went flat and stayed flat, and I had no colic. But I also had a system that had gone into shock at the sudden lack of roughage – could you still buy liquorice powder? For the first time in my life, I actually needed it.

Yet bread and bran seemed to be the reason I blew up like a Zeppelin. I experimented with porridge, (oats, after all, are not wheat) and swelled till I couldn't get through the kitchen doorway! Oh, yes, said the girl in the baker's, the problem might be with gluten and although they're not supposed to contain it, not all oats are actually gluten-free.

Then something strange happened. I drank a glass of orange juice, and swelled. I ate an orange, and swelled.

So gluten wasn't the culprit after all, it was oranges, or Vitamin C! I toasted a slice of bread and ate it, and for the first time had swelling and colic simultaneously, and so badly I had to go back yet again to my doctor. Now it wasn't just a question of cutting out bread because I got a swollen stomach; eating it resulted in agonising pain. When I presented the latest prescription to my friendly local pharmacist he said, “These should help, they're good for irritable bowel syndrome” – the first time I'd heard those words and a diagnosis. I felt like leaning over the counter and hanging on to his lapels, and even more so when he went on to say, “First they give it to you, then they have to try and cure it.”

Given it to me, who'd given it to me? “I bet you've been taking bran,” he said. “Everybody was told to take it, sometimes for years,” (“Like me,” I whimpered). “Fibre's good for the digestive system, but raw bran – it could irritate anyone's colon, and most of these people were already sensitive. Now they've got irritable bowel syndrome, and badly. When it comes to the medical profession, sometimes I despair.” He despaired; only committing murder would have relieved my feelings!

I went home with my box of capsules and put a cold towel on my head while I read the leaflet that came with the drug. Yes, these were for irritable bowel syndrome, and cramps and colic. I took the capsules and was no better, and the next fruit that made me swell was apples.

Sometimes the best help you can get from a hospital doesn't come from the doctors. I was supposed to go back anyway, but first I phoned and asked for a gastroenterologist's secretary. (Almost invariably, I have found hospital secretaries to be spectacularly knowledgeable and ready to do anything they can to assist patients; this despite the fact that they can't see the floor of their tiny offices for stacks of files – and I know that's what their offices are like, because I've been in them.)

The secretary I spoke to told me she was surprised any doctor suggested bran any longer, given current thinking, but what she'd come across were various references in the literature to linseeds, which seemed to have all sorts of benefits, and when would I like an appointment?

Meanwhile, the lack of bread (and cakes, and scones, and biscuits, and hot cross buns, and crumpets, and everything I loved – anything with flour in it, because flour contained gluten) was having a drastic affect on my weight. Never fat, I was getting thinner and thinner, like a cursed character from a Stephen King novel. Yet strangely I could occasionally eat pasta, which made no sense at all.

As if that weren't enough, all my life I had adored fresh fruit, especially the kind you can bite into with a crunch, like a crisp apple; I used to make fresh fruit salad as a dessert, drowned in Kirsch: but that was out now. No oranges, no apples; if I tried to eat them, the same thing happened as with wheat: I didn't just swell, I was doubled up with colic. I moved on to pears.

The gastroenterologist I met this time was a vast improvement on those I had met in the past: informed, interested and concerned. But I had no idea how many years of visits to him lay ahead of me. There were colonoscopies, there were endoscopies, (cameras put up and cameras put down my insides), there was a young dietician who couldn't spell, chewed gum, and believed in cutting out food altogether, there was a scan of my gall bladder, and there was oesophagitis. Don't have this, if you can avoid it. It means your oesophagus is sensitive and if you eat or drink anything that irritates it, you feel as though a ferret is gnawing its way into you, from between your shoulder blades. Tomatoes didn't annoy my colon, but they affected my oesophagus like battery acid. So did most kinds of seasoning. Wine was the same, even diluted with water till I could barely taste it. The problem with irritable bowel syndrome, you see, is that it's power-mad and can spread through and take over your entire digestive system.

But strangely, amongst all the examinations was a painless but simple one – a blood test, to see if I were allergic to gluten. And it came up negative!

This is what I learned: coeliac disease is a serious autoimmune condition, suffered by people who are really allergic to gluten, and easily established by a blood test. Although it may develop as early as in childhood, it can occur at any age, and requires the complete elimination of gluten from the diet. (I met people who, if they ate even a small quantity by mistake, had to take to their bed for days.) It usually requires monitoring, but the good news is that resolutely sticking to a gluten-free diet solves the problem completely.

Irritable bowel syndrome, with its possible intolerances of not only gluten but just about any food or fruit you can name, is altogether different, but it's a total and utter pain in the neck. Or, more properly, every bit of the body that has anything to do with digestion.

Given the derision with which homeopathy is usually treated by the medical profession, I found it amazing that a specialist in IBS recommended me to the Royal London Homeopathic Hospital, where a doctor was trying vaccination as a possible cure.

But I should make it clear that doctors at that hospital have all the conventional qualifications before they move on to study and use homeopathy; whatever happens they are not going to harm you, and if my treatment is anything to go by, they will try very hard to help. What I experienced with the doctor I saw was an even greater thoroughness than I'd encountered up till now. There were all sorts of tests to check whether I had some germ or parasite lurking somewhere in my insides, courses of medication ( not the homeopathic kind) to make sure that antibiotics hadn't affected my ability to digest normal food, and then the start of the vaccinations. For a period of three days I had to eat an incredibly restricted diet – bottled water and sago remain ingrained in my memory – and on the middle day of the three I went to the hospital for my vaccination. A patient waiting for her latest appointment told me that at last she was beginning to be able to eat dairy foods, thanks to this programme. And how long had it taken, I asked eagerly (that spring might bring back cream teas and scones!). And learned she was on her fourteenth injection. An injection happened at intervals of three or four months … I sat there contemplating the years ahead and feeling very, very old.

At first it seemed the injections were helping, but then suddenly I couldn't eat pears any more. I moved on to bananas, and kept my weight up for a whole summer by eating bowls of bananas and ice cream. It was a bad day when I couldn't do that, or eat any other raw fruit of any kind. I'm just under five foot eight in height, and had weighed around eight stone ten or nine stone all my adult life. Now my weight plunged to six and a half stone. The concerned doctor referred me back to my gastroenterologist for an urgent colonoscopy, clearly fearing something sinister. But I had nothing life-threatening, except an inability to eat practically anything without writhing in agony, and was always absolutely starving. It was like living with a monster in my innards. And if the Alien had burst out of me, I'd have been grateful! But it stayed, and it was insatiable.

Determined to help somehow, since the vaccinations clearly weren't the answer, the Homeopathic Hospital doctor sent me along a corridor to a nutritionist, who turned out to be intelligent, sympathetic and supportive beyond belief. The exact opposite of the dietician I'd seen long before, her mission was to get food back into me, and she explained that the only way to do so at this stage was a teaspoonful at a time. Here was a list of crucially valuable foods, such as oily fish, but I could only reintroduce them to my diet tiny bit by tiny bit. And I wasn't even to attempt to eat raw fruit, but see what happened if I tried it cooked.

So slowly, with setbacks when I became too ambitious, I gradually progressed till I could eat a few very plain things, and even some bread, provided it was made with rye. Bananas returned, so long as they were baked, and (longing for summer fruits) I boiled cherries and ate them with no ill effects. And, yes, this sounds like the diet from Hell but if you're hungry enough you'll eat anything you can, and I did.

The nutritionist was full of interesting information. Why did yoghurt give me such terrible cramps? Because live yoghurt stimulates your colon. Why couldn't I eat raspberries or strawberries? Because of their seeds. And was I trying beetroot yet, it'd be so good for me?

Hand over hand I climbed up the scales till the great day when I was only a few pounds short of eight stone. Thrilled and optimistic, I wasn't to know how things were going to change. My doctor took early retirement, there were a whole raft of alterations and cutbacks, the nutritionist disappeared.

Meanwhile, what I regarded as the Alien had stretched to claw at medication. I have chronic sciatica, but could take nothing for the pain without getting horrendous colic. Back at the gastroenterology department for a routine check-up, and struggling to maintain my weight and my sanity, I met a friendly registrar who told me that the medical profession didn't know what caused IBS, or had much to offer patients when they had the condition as badly as I did. However, hypnosis seemed to help, and he knew where to refer me; the one gloomy note being that a male patient of his was desperate, as the funding for his treatment was about to be lost.

While I was waiting for an appointment, I did some research in a library. As far back as 1984 , the Lancet had published data produced by pioneering doctors in Manchester , showing how successful hypnotherapy could be in the control and even cure of stubborn Irritable Bowel Syndrome. That long ago! (If you go into Google right now, in 2013, you'll find that newspapers are still reporting this as a fresh discovery, and crediting America and Sweden for the ground-breaking research! Wrong, and insulting: the debt, and the credit, is owed to those wonderful medics right here in England .)

All I knew of hypnotism were the parlour tricks on television. I met a serene and sensible woman who took quantities of notes, and only then went on to a series of tests to see how I responded to hypnosis. It took much longer than I'd expected – none of the “click the fingers and the victim crows like a chicken” nonsense. But it was very calming and relaxing, and I was handed a tape the hypnotist had made of the session, to play and listen to at home.

I loved listening to the first tape, because it lightened my desperate mood and made me feel unaccountably happier, and it was the same with the others that followed. The sessions gave me hope, even during the intervals between them when I was having spinal treatment, and despite the fact that I was told it would take twelve such consultations for the hypnosis to have any real effect on my IBS. Then I rang to make my seventh appointment and learned the unit was being closed. Nothing to do with lack of success: everything to do with money.

And if you're wondering why I didn't find a hypnotist and pay to be seen privately, I'll point out that every spare penny I've got was already going (and still does) on back treatment, because the NHS have come to a dead stop with my spine. Apart, of course, from prescribing drugs I can't take because of my IBS. My cup doesn't just run over, it's swamped.

The closure of that unit took place years ago, and since then the Alien has gone from strength to strength.

The last time I saw a gastroenterologist, fairly recently, I explained that I couldn't even swallow paracetamol, which wasn't perhaps very important when what you needed was so much more awesome, but I really would have liked something to take the edge off, and I couldn't take what the rheumatology people were prescribing for the arthritis, or the calcium for the osteoporosis either, and I didn't want to be difficult but ….

I heard the “nobody knows what causes Irritable Bowel Syndrome, it's a mystery” speech, which has replaced bran as the universal response, but in amongst the routine words there was one that sounded like “hypnosis”. What? Had the unit been reopened – it'd been just around the corner. No, it was in this hospital now, he'd refer me; and he swept out, leaving me grovelling with gratitude.

Until I got a phone call from the hospital where the hypnosis treatment for IBS was actually happening, and discovered that it was too far away for me to endure the journey without pain-killers. And I can't take pain-killers because of my IBS.

Whichever way round you put that, it doesn't work out. I'm stuck with the Alien.

But I can at least pass on some advice and comment for other people. First, unless you've had a blood test that confirms you are allergic to gluten, I wouldn't recommend anyone to cut it out completely. Just this year, someone I know thought doing so would solve problems, and the family joined in, in support. A bread-making machine was bought, and supplies of gluten-free flour. Gluten-free pasta, gluten-free cereal – you name it, they had it. And within a few months he started becoming sensitive to all sorts of other foods. Far from feeling better, he felt a thousand times worse! Someone with sense told him that cutting down may be good idea, but cutting out a staple from your diet means that your system won't recognize it or how to deal with it from then on, and goes on red alert about whatever you eat. Now, once a week he buys bread or rolls from an artisan bakers, and also has the occasional Guinness or whisky (both of which, of course, are grain-based).

The worst mistake I made wasn't to finish with the dread bran, but to cut out my home-made bread, and all wheat. Wheat went, and the Alien moved in.

Yet you can't read, hear or watch a celebrity interview without learning that someone famous is on a gluten-free, dairy-free diet: Goldie Hawn looks younger than her own daughter and according to that daughter, Kate Hudson, told her offspring to go on a wheat- and dairy-free regime ages ago. Goldie herself hasn't touched such monstrous products in decades, but she also works out like an Olympic athlete, so what she eats may not be exclusively responsible for her amazing face and figure.

Gwyneth Paltrow, long known for a macrobiotic diet so stringent that its ingredients have to be brought in by yak, listed “bad foods” when she was on the Graham Norton show, and the first she named was gluten – virtually poison. Anyone would think that centuries ago it would have been burned at the stake.

But wait a minute, for all those centuries bread was in fact the staff of life. Made with wheat, full of gluten, it was essential for existence. When told the French peasants were starving for lack of it, Marie Antoinette didn't say, “Oh, lucky them, no gluten!” Her apocryphal remark was, “Let them eat cake.”

So what has happened? Well, various things. After all, there's a whole generation out there who've never been told to eat bran, yet IBS has reached epidemic proportions. Just why is gluten such a bugaboo?

Bread is a good place to start, in this country. If you've watched Paul Hollywood making bread on television, you'll have seen how it's been made by the best bakers, time out of mind. How it's still made, by artisan bakers in this country, and throughout Continental Europe. And “time” is the crucial, operative word: that's what good bread-making takes.

But back in 1961, the Chorleywood Process was developed, and the vast majority of our bread was changed forever. Lower protein wheat was used, to which were added unprecedented quantities of yeast, together with fat and water. This less than pleasant mixture was then spun in high speed mixers like a soggy T-shirt in a spin drier, reducing the usual kneading and proving time from hours to five minutes – in 2011 an excellent article by Bee Wilson in The Telegraph described all this, and revealed that the industry refers to it as “no-time dough”.

No matter that the bread produced didn't have the lovely crust and crumb of the traditional kind, or that there was something of damp blotting paper about it; or that instead of going hard when it was stale, it went mouldy. The industry, and supermarkets, adored it because such vast quantities could be produced, and so quickly. Eighty per cent of all the bread eaten in this country is made this way now; about as good for you as the plastic it's wrapped in, whether it says it's wholemeal and healthy or not. The only way you'll find anything else is if you buy a loaf with a crust from a baker whose methods you can check and trust.

Small wonder, then, that the daughter of a friend can't eat bread in this country without suffering IBS symptoms, but can eat it with no problems as soon as she's crossed the Channel! The French shop every morning for fresh loaves and croissants, as do the residents of most other European countries: the take-up for the Chorleywood Process appears to be overwhelmingly British. Lucky old us, and those of our population with localised gluten intolerance – something they may not realise, as they innocently add to the huge totals for IBS.

Then, more fundamentally, we should consider our crops. And it's not just whether they're genetically modified, which is an incredibly contentious issue: for instance, the latest point being made here is that if you buy meat there's no labelling to inform you whether the animal was raised on GM crops, and the same applies to dairy products – were the cows fed GM? There's a huge row about this right now in America, where campaigners want a law to protect them, as their Food and Drug Administration regulates genetically modified foods but does not approve them (!) and there appears to be evidence of health risks and food allergies.

I want to try and keep out of such a huge debate, which has so many pros and cons on both sides: looking for information, I talked to someone from a farming background who told me that grains just aren't grown in the same way that they were in the past, and talked about rotation and scythes and pesticides. According to him, the result is that what we're eating is unrecognisably different.

For instance, a farmer these days must test his soil to make sure it doesn't contain levels of pesticide outlawed by the EU, but what's acceptable is still pretty mind-boggling. So much so that changes may be on the way very soon now, as the terrible decline in bee population over recent years is being attributed to the world's most widely used pesticides. And it's not only bees that have died out – it's the insects which pollinate a third of all food. The scientific evidence is so strong that proposals by the European commission could result in a ban of these chemicals as early as this July.

The terrible fact is that not just crops but all our food has changed. Buy free range eggs (please!) but bear in mind that doing so is taking only one tiny step outside the factory that farming has become. Forget the conditions hens live in, did you know it's perfectly legal to feed them something that makes the yolks darker and more golden and more attractive? And no labelling will tell you?

We have strains of diseases now that are worryingly resistant to antibiotics, and doctors blame us for having chucked down handfuls of tablets when we didn't need to. But did anyone warn us when we started eating animals pumped full of antibiotics before they became food? Or tell us what the result might be?

I heard a woman call in to a radio programme about food allergies, and describe her experience with lactose intolerance (lactose is the sugar in milk and therefore, although to a lesser degree, in other dairy products). Fed up with the loss of a staple she liked from her diet, she'd taken a chance and tried Organic milk – and been perfectly all right. Whether it was the grass the cows grazed on, she didn't know, and neither do I. I'm merely reporting her remarks. If anyone out there has her problem they might care to try her solution.

I don't want to demonise the farming industry, or promote organic food – we have a vast and ever-growing population which has to be fed, and in this economic climate many people can barely afford ordinary groceries, let alone organic ones.

But what all this has led me to is the sad conclusion that our human digestive system, which took millions of years to evolve, is having to cope with enormous changes in what we eat that have been only fifty years or so in the making, and a lot of us can't keep up. To fellow IBS sufferers everywhere, you have my sympathy, and if anything I've written has been of help, I'm glad. I'm off to look at a picture of a sandwich. I just wish I could eat it ….

© Alida Baxter

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