IBS Tales

I Have IBS - Now What? by Dr Ashkan Farhadi was first released in 1996, but a brand spanking third edition has just come out so it's a good time to give it a review.

This book uses a simple question and answer format to tackle the main concerns of IBS patients. The first section explains the basics irritable bowel, including how common it is, what a functional disorder is, how IBS is diagnosed using the Rome Criteria, and so on.

The second section looks at possible causes of IBS (or the 'etiology') and covers subjects such as what triggers IBS symptoms (certain foods, stress, menstrual cycles etc) and why these triggers vary from patient to patient.

This kind of chapter is always a difficult one in IBS books because you get into the realms of the brain-gut axis and serotonin and neurotransmitters. On the one hand I do think that it's valuable to learn everything you can about IBS, but on the other I think that 99% of people who buy books about IBS are looking for treatment ideas and relief, and perhaps especially so if you have just been diagnosed.

Still, it's a bit harsh to criticise the author for being careful to explain the science behind IBS, and he earns bonus points for giving a clear answer to my litmus test for IBS doctors - do you believe that IBS is all in our heads or psychological? Here's how the book covers that old chestnut...

Q. "I have been referred to several physicians and after extensive evaluation they told me "you are healthy and everything is in your head". But I am sure that there is something wrong with me. So I kept changing doctors to figure out my problem. Are you telling me now that I have a real problem in my GI tract?"

A. Yes. Actually, acceptance and understanding of your disorder is one of the key steps in your successful treatment.

Q. "Finally, after all these years, I feel a little bit better now that I know that I have a common, treatable disorder. Everybody thought that everything was in my head and that I think I am sick, or "psycho" or that I like to play the sick role. So they were wrong!"

A. Yes. Your disorder, IBS, is very well-known to most physicians. It is even possible to observe the abnormalities in GI motility when certain sophisticated types of tests are conducted.

The author also addresses the vicious circle of IBS (stress causes symptoms causing more stress) and says that it could well be the IBS that makes us nervous and anxious, rather than the preferred explanation of many doctors who like to believe in a typical weedy IBS patient whose symptoms are caused by her pathetic personality.

Again, perhaps a little too much explanatory science in this section, with a lot written on mast cells and cytokines and dysmotility, which is all very interesting but only if your stomach isn't killing you.

The third section describes the typical symptoms of IBS, as well as outlining what symptoms are not generally part of IBS and should be investigated further. It also looks at common stimulants for symptoms, including different foods, smoking and alcohol.

Section four looks at how IBS is diagnosed and describes some of the tests that you might need to undergo. It also covers alternative diagnoses such as celiac disease.

Section five describes the treatments that are available for IBS, and this for me is the most important part of any IBS book for patients. Dr Farhadi suggests that reducing the stimuli that set off IBS should be the foundation of a treatment approach, and that means avoiding trigger foods and reducing stress. And that's fair enough.

He also mentions treatments such as hypnotherapy, fiber, some commons laxatives and anti-diarrheals, herbal remedies, anti-depressants and aloe vera. A fairly good chapter then, but as it only covers 21 pages of the book I wouldn't describe it as exceptional, and I would have liked to have seen far more detail in some of the answers.

The sixth chapter is called "Living with IBS" and looks at some miscellaneous issues such as whether IBS affects sleep (apparently a recent study has shown a link between IBS and sleep problems) and whether pregnancy affects IBS.

The final chapter is titled "IBS Latest News" and is intended to cover the latest research and treatment options for IBS, but I found some of the info here pretty irrelevant - to be honest I'm not that interested to know whether Chronic Fatigue Syndrome is an infectious disease or not, even if it does have ties to IBS, and if video capsule endoscopy can detect undiagnosed cases of Crohn's Disease then that's super but it's not going to help my IBS.

So - this was a clear, and interesting book, if a little short for my taste in some sections and long in others (and overall it's on the short side as well, just 119 pages). Dr Farhadi is clearly a fan of patient education and the power of knowledge, and that's great - I would just argue that knowledge of complex gastrointestinal processes is less important in a book like this than a comprehensive run down of all possible IBS treatments. It's tough to concentrate on neurotransmitters and mast cells when your gut is having a breakdown.

You can read more about I Have IBS - Now What? on the author's website.

In terms of my best ever IBS book recommendation I would have to go for IBS - Answers at Your Fingertips for UK sufferers, and probably The First Year - IBS for US sufferers (also available as a UK edition). But let me know if you disagree!

Trufree, the UK manufacturers of wheat and gluten-free foods, have just released some new products, and I'm pleased to say that I've been sent some samples for review. I'm even more pleased to say that the samples were of Cookie Bites, Chocolate Brownie Bites and Choc Dippers. Mmmmmm. (Pause for Homer Simpson-esque gargling noise).

When you're following a gluten-free diet, like I have done for the past seven or eight years, there are so many foods that you have to cut out from your diet. Luckily in recent years there has been an explosion of good quality gluten-free foods, and although they are often pricier than their glutenful counterparts, and sometimes can't match the taste and texture of the standard foods, they are still very useful.

I use a range of gluten-free foods, and I tend to think of them as being in two different categories - the staple stuff and the fun stuff. Staple foods include bread and pasta, boring necessities, and the fun stuff covers things like biscuits, cakes and doughnuts. Gluten really does get in everywhere, and if you're wiping it out completely from your diet then it means foregoing a whole stack of scrumptious goodies.

So that's where the gluten-free alternatives come in. I should tell you that all of the products mentioned in this review are gluten and wheat-free, and no, gluten and wheat are not the same thing. Gluten is a protein that is found in wheat, rye and barley (and to a lesser extend oats, oats always cause a big argument for some reason). So if a product is labelled wheat-free but not gluten-free then it could well contain rye or barley, and therefore gluten.

OK, first up, the Cookie Bites. These are mini versions of the classic chocolate chip cookie, in a cute little resealable tub rather than a packet. They were certainly very tasty, although in common with other gluten-free biscuits I have tried they were a little on the dry side, but that's no doubt due to the limitations of the rice, potato and other flours that the manufacturers have to use instead of normal flour. Still, they disappeared very quickly nonetheless. I would give these a seven out of ten.

Next, a Choc Dipper, which is not something that I thought would ever be available for us gluten avoiders. The Choc Dipper comes in a little pot, and you get small breadsticks to dip into some Nutella-like chocolate spread. Again very tasty, and a generous portion of the choc spread was appreciated. Another seven out of ten.

And finally, another cute little tub, this time containing Brownie Bites, another mini version of a traditional chocolate recipe. These were my favourite of the lot. They were nicely soft and squidgy with a proper cake consistency, and plenty of choc pieces to boot. Highly recommended, and I'd give these a nine out of ten.

You can find these new products in branches of Waitrose and Asda, and you can also check out the range of Trufree products on their site at http://www.trufree.co.uk (the products I have reviewed are so brand spanking new they're not on the website yet, but you can see lots of other stuff there including breads, other biscuits, pasta and more).

Do you guys have any favourite gluten-free products, or do you recommend any of the Trufree range? Let me know by leaving a comment.

OK, so that title's not gonna win me any headline-writing competitions, but those of you who have read my Top 10 Stupid Things Said to IBS Sufferers may have got the reference.

This post is about the one stupid thing that we as IBS sufferers say to each other. I could only think of one as opposed to 10 because we IBS people are obviously more intelligent than that other lot. So - onto the stupid. And the stupid goes something like this...

"I have been taking this pill for three weeks now and it has cured me completely, you should all run out and try it right this second!"

Or this:

"I have been taking this pill for three weeks now and it has made my symptoms 300 times worse, you must never ever take this pill on any account ever even if it's the last pill on Earth."

Why are those things so stupid, and what do they have in common? Because drugs, and any other treatment, affect people differently. That's it.

I receive lots of IBS stories and treatment reviews in my webmaster capacity, whole truckloads of the things, and the vast majority are very useful and well-written and I am proud to display them on my sites in the hope that they might help people find out about different treatments and gain some hope that there really are treatments that work.

However, I do find that I sometimes need to edit out the odd comment, the ones where people tell me and other sufferers, with absolute certainty, that I must never ever ever take Lotronex, say, or Imodium, despite the fact that there are already 12 glowing reviews of Lotronex or Imodium on the site, and despite the clinical trials that show the drugs work for many people.

You see this on all kinds of health forums across the net - people who have had a good or bad experience with a drug or product and then proceed to either tell everyone that they must take it immediately or else, or not touch it with a bargepole. And it's just daft.

If you've been to a restaurant and they took two hours to serve you then fine, tell everyone you know that it's rubbish. But if you just tried a treatment and it didn't work for your particular symptoms, in your particular body, then just say "It didn't work for me" and leave it be. Because otherwise you might be warning someone away from the one treatment that could actually change their life. 

Did you know that 4,090 people in the UK are too sick to work because of IBS? That's the number of people who claimed incapacity benefit or severe disablement allowance in February 2007 and who cited IBS as the main reason for their claim. (For my further-flung readers, incapacity benefit and severe disablement allowance are 'social security' allowances, ie: government money for people too ill to earn a living).

Let's put that 4,090 figure (the most recent figure that has been released) in context. There are perhaps 40 million people of working age in the UK. Now, IBS comes in degrees, and you'd have to have severe IBS to stop you working completely.

So, let's say 0.5% of the 40 million people have severe or very severe IBS, and that gives us 200,000 people, rather more than the four thousand odd who currently claim benefits. Even if we go down to 0.1% of the population, that's 40,000 people, which is still 10 times the 4,090 figure.

To arrive at a figure of 4,090 you have to go down to 0.0001% of the working population. That's quite a small number. And this is out of a total of 2,704,100 people on sickness benefits, which is a startling number in itself.

And things get even more startling if we compare the figures for IBS to those for other disorders - an astounding 506,800 people claim for depression, 50,000 for alcoholism, and 54,320 for epilepsy. I would have thought there would be at least as many IBS sufferers unable to work as there were epileptics unable to work, wouldn't you? Is depression really 123 times as common as severe IBS? IBS is after all often cited as the second most common cause of absenteeism, so lots of us clearly struggle to earn a living. So where's all our money?!

But before we get all worked up about the injustice of it all, there are a few things to bear in mind. First, the stats are "are based on [government] staff's interpretation of what can sometimes be quite vague information about the disabling condition on medical certificates". In other words, the stats are compiled by a spotty 20 year-old who is paid minimum wage to do a crushingly boring data entry task, may occasionally nod off while he's doing it, and has to interpret all kinds of vague medical scribblings and then shove them into just one category.

So that means that all of the figures and categories should be taken with a pinch of salt. Plus, of course, plenty of people will come under more than one category - there might well be a lot us IBS types hidden in the 'depression' category, or the 'anxiety disorders' category, because for whatever reason the depression or anxiety is considered the 'main disabling condition', rather than the IBS.

Secondly, I don't actually believe that 2,704,100 people in the UK are too sick to work. Some people are on benefits fraudulently, and perhaps many more are genuinely sick but not really sick enough to claim benefits - you can find whole towns where huge numbers of people are on incapacity benefit, and it's linked to unemployment and poverty and general grim reality rather than a ridiculously unhealthy local population.

So 4,090 people with IBS so severe that it prevents them from working, who have no other primary disorder such as depression, might actually be about right.

Perhaps the most useful thing we can learn from these statistics is that it is possible to get sickness benefits for IBS alone. One of the most common misunderstandings about the benefit system is that there is a magic list somewhere of all the disorders that qualify for payments, and if your illness is on the list then you're sorted.

That's just not true. It's more about assessing each individual case and exactly how your illness affects your life and your ability to work, and IBS, with its pain and its discomfort and its marathon bathroom sessions, is just as valid a disorder as anything else.

So if you are suffering from IBS, and you find yourself unable to work, for goodness' sake apply for benefits. As any IBS sufferer will know, you sure deserve them.

(Just out of interest, when these stats were first released some of the newspapers had a very exciting time ripping the government to shreds, first because of the sheer number of people on benefits, which is fair enough, but also because some of the medical conditions cited in the statistics were seen as ridiculous reasons to claim sick pay.

I read articles that were sneeringly dismissive about all kinds of conditions, including migraines, sleep disorders, and depression. Because, as you know, migraines are a bit of a headache, sleep disorders make you yawn a lot, and depression robs you of the ability to sing along to Harry Connick Jnr in the shower. Luckily, I didn't see anyone insult the IBS sufferers, but I hate that idiotic brand of self-satisfied, judgemental bleating that comes out of people who are lucky enough to have no real idea of what they're talking about.

On the other hand, I have to admit that even I, who will always be on the side of the sick person, was a little baffled by some of the categories - 40 people claim for 'nail disorders', and 50 for 'acne'? I suspect a spotty 20 year-old with a sleep disorder has got his categories in a bit of a muddle...)

...this is what I would do...

1) Put the diarrhea sufferers on calcium carbonate, and the constipation sufferers on magnesium (probably the citrate form)

2) Tell them all to stop drinking alcohol and any caffeinated drinks

3) Put them all on a gluten-free and dairy-free diet

4) Tell them to cut out all artificial sweeteners, and keep sweets and treats to a minimum

5) Tell them to take a fiber supplement (NOT bran or anything with wheat in, something like Citrucel or acacia fiber) with lots of water

6) Tell them to start hypnotherapy with a specialist IBS therapist, or use the IBS Audio Program 100

And that's it! Now, that's a lot more advice than many sufferers get from their doctors. What do you think - how many people would get at least some relief? What would you advise people with IBS if you had to do it in a generalised way?

(This post comes with the usual boring disclaimer that I never ever offer medical advice, I'm not a doctor and I don't even play one on TV).

Right - after an extremely interesting few weeks tearing my hair out and chopping off various limbs, I have now, finally, got my blog software to accept new entries and comments. All I can say is, thank the Good Lord, whether he exists or not.

So - please feel free to comment on any entry on this blog should you feel so inclined. You'll also notice that the layout and colour scheme has changed, partly because there are some fancy new settings to play around with in the new blog software, partly because I can't be bothered to try to recreate the old site. Things will probably change more in the future too, so bear with me.

I was recently sent a copy of a new book called IBS: Answers at Your Fingertips for review, and I have to say that I was extremely disappointed in this book. The last two books that I reviewed, IBS Chat and Romance, Riches and Restrooms were rather grand, and I had to give them glowing reviews, which is far less fun than ripping a book to shreds.

Unfortunately, IBS: Answers at Your Fingertips is if anything even more worthy of a glowfest, so that's no fun at all. If anyone out there has just published a book called IBS - It's All in Your Head You Big Freakshow then please forward a copy to me at your earliest convenience so I can trash it.

So, reluctantly, let's get on with the glowing.

IBS: Answers at Your Fingertips is written by Dr Udi Shmueli, Consultant Physician and Gastroenterologist at Northampton General Hospital in the UK, and it uses a simple question and answer format throughout to cover all of the typical IBS questions - what causes IBS, what are they symptoms, what are the treatments, and so on.

There are a number of books that do this already of course, but there are a few reasons why this book is a bit special. Firstly, it covers a number of myths and specialised topics that I haven't actually seen mentioned in other books. Here are just a few of the best snippets of info that you might not find elsewhere:

- IBS is not caused by a Western lifestyle or the 'usual suspects' of smoking, alcohol or obesity as it exists in every society that has been examined

- IBS is more common in women in most countries, but not India, Sri Lanka and Japan, where it is more common in men

- studies have shown that bloating in IBS is a real, not perceived, phenomenon, and the increase in abdominal circumference can actually be measured

- the idea that laxatives can damage the bowel if taken for too long is a myth, and patients are very unlikely to become dependent on laxatives

- in IBS studies, as many as 30% to 50% of patients will improve when given a placebo, or sugar pill, and this placebo effect can last for as long as three months.

These facts come in addition to very comprehensive chapters on each aspect of IBS, including separate chapters looking at IBS-D, IBS-C and IBS-A (alternating between diarrhea and constipation). There are a lot of useful suggestions on which treatments are most effective for which symptoms, as well as a good dose of realism (although not enough to depress you) about the fact that IBS can be tough to treat and we shouldn't expect a magic bullet.

The fact that Dr Shmueli manages to make it clear that IBS is a tough cookie without turning the book into a hopeless downer is testament to another major strength of this book - the fact that it is clearly written by a practising IBS doctor who knows how to treat people like human beings.

Right from the introduction, when Dr Shmueli writes about doctor's attitudes to IBS sufferers and says "Historically, blaming the victim was a common response to insoluble problems", it's clear that the author is not one of those unfortunate doctors who believe that IBS sufferers are malingerers and medical doctors are God.

When was the last time you read a book by a doctor who writes about hypochondria and admits that he had several 'terminal illnesses' himself in medical school, or quotes one of his old medical textbooks as saying "Half of what we know is untrue. The problem is - which half?" and says that this phrase applies just as well to his own book?

I also liked the admission that current medical knowledge is just that - what doctors believe to be the truth at the current time, rather than facts set in stone: "Since the dawn of history, people have reported symptoms that their doctors could not explain in terms of actual physical findings. The theories dreamed up to explain such symptoms in the past appear ludicrous today, and no doubt today's offerings will amuse future generations."

Despite this acknowledgement, there is still plenty of good, sound advice in this book, often with very interesting references to clinical studies. This is a great book for both the newly-diagnosed and the long-term sufferer. If all IBS patients had access to this kind of knowledge and empathy, we'd all be a great deal happier.

This is a UK publication, so some of the drugs and supplements may be unfamiliar to overseas folk, but the majority of the info is useful to all.

IBS: Answers at Your Fingertips is available direct from the publishers - see their website for ordering details.

Small disclaimer: IBS Tales is listed in the "Useful Resources" section of this book, and I was rather chuffed to see it described as a "fascinating and moving site", although obviously that hasn't affected my review in any way. The sports car did though.

Many apologies, I'm still fighting the blog software, the comment section now seems to have disappeared entirely. Normal service will resume as soon as I work out what the bloomin' 'eck is going on.

I've had some reports from people who have tried to comment on this blog but have had their comments apparently rejected by the system - I would just like to confirm that this is not because I have read the comments and thought "No way, dude, write something interesting", but instead it's my blog software being very strange indeed, and deciding for some unknown reason to block off certain comments.

Many apologies. This past weekend I have updated the blog software to the latest version (well, my helpful tech guys have done it for me, let's be honest) and changed a few settings, and so hopefully things will be back to normal now.

If you could spare five minutes to test out the new system and leave a comment on this entry (just "Hey, how are the guts") I would appreciate it!

My last blog entry was on the topic of self-diagnosis and how moronic it is, and when I mentioned the same subject to my newsletter subscribers I got a pretty hefty response. If there's anyone out there who is still self-diagnosing, have a read of this:

"I confess I was one of the dummy ones that read about IBS on the net and said "Yes, this sounds like", but I am the scientific-minded type so I wanted to cross-check my self-diagnosis. It came out to be something incredibly simple but not less troublesome - a helicobacter pylori infection.

I said not less troublesome because some strains of these bacteria are resistant to the first antibiotics commonly prescribed. I've taken two courses of antibiotics already and it seems to be still there...

The symptoms may be very similar to IBS - for every different patient, there may be slight variations of the symptoms for the same condition. I am happy I went to see the doctor, otherwise I could have have this disease undiagnosed for years. Helicobacter infections are associated with stomach cancer, hence the importance of a medical opinion."

While a number of emails agreed with the dangers of self-diagnosis, there were also several emails from people who weren't self-diagnosing, but had actually been misdiagnosed by doctors. This is a good reminder that any medical diagnosis will require co-operation and communication from both the doctor and the patient, and there is responsibility on both sides.

Patients must visit a doctor in the first place, and then we must explain ourselves clearly, mention ALL of our symptoms, not just the socially acceptable ones, and try to ensure that our doctor has a clear picture of how our symptoms are affecting our lives.

And doctors must take the time to listen, offer tests and referrals if needed, show empathy to patients in pain, and make sure that they don't jump to the nearest conclusion.

I'll leave you with one of the emails I received on the subject of doctors who misdiagnose. This story is a good illustration of how doctors sometimes try to fob IBS patients off with a prescription and a "Just learn to live with it, petal", and how important it is to not let them get away with it!

"I don't remember the exact transition from normal bowel to stupid bowel, but it was about 10 years ago. I began to have diarrhea frequently but also became ill a lot, and caught every bug that was going around. At first I largely ignored it and dealt with the unpleasantness, not having a huge amount of natural shame.

The first time I went to see my GP, he happily suggested that it was 'something we call IBS', said that no-one knew what caused it etc, and tried me on that anti-inflammatory stuff and some fiber goo. When nothing changed, I went back. That particular GP was and still is a real patronising goon, so I visited every GP in the practice. One particularly enlightened lady doctor actually said to me: 'What do you want me to do?' (in the tone of 'What do you want me to do about your dead goldfish?').

This pattern continued for about three or four years until I saw a locum GP at the same surgery. When I had sat down she asked me what the problem was and I replied that I hadn't had a solid poo for about three years. When I saw a hint of surprise on her face, I knew I was onto a winner! She seemed concerned that I hadn't been referred to the hospital and did so at once.

My new hospital doctor blew air up my bum. Then he announced that I probably have something called colitis, and that some more air-blowing tests will confirm it. He then said, and I swear this is true, 'Don't worry, we'll fix you'.

I've since realised that colitis is not fixable, and like IBS, there is an ocean of medication and dosage to sort out, but when that is done colitis can be managed, in my experience, to a more agreeable level than IBS.

So in a very rambled way, what I'm trying to say is that whatever you think you may have, insist on a referral. It took my surgery 10 years and I didn't even have what they originally diagnosed. Secondly, most doctors talk crap and think that they are God. So search for one that listens."

There was a survey out the other day which found that, out of 2,000 adults, 38% said that they "evaluated their self-diagnosed condition over the internet", and 48% said that embarrassing conditions such as sexually transmitted diseases and bowel problems would make them think twice about going to the doctor.

Now, first of all let's take a look at the 38% of people - that's a whopping 760 out of 2,000 adults - who are self-diagnosing and trying to evaluate their own symptoms over the internet. These people have no brain.

Does that sound a bit harsh? Well, it's true. I'm sorry if there's anyone reading this who self-diagnoses through a quick Google in the morning, but, in my humble opinion, you are daft. Let me give you a number of examples as to why, and seeing as though IBS is my specialist subject, as well as one of those embarrassing conditions that people worry about, I'll be using IBS as an example.

Let's imagine that I am an IBS sufferer, and I have never been to the doctor about my symptoms. I search for "IBS" on Google, and I get a number of different sites. Right away I'm in trouble - some of these sites are very well-researched and written by the best doctors in the world. Some are written by people who are only interested in selling you their brand new super-dooper pooper capsules that cure IBS, cancer and global warming in one go, only $99.99 while stocks last.

And some are written by IBS sufferers themselves, and let's say you click on to IBS Tales to try to get your diagnosis. I've listed some common symptoms of IBS on there, and maybe you have every symptom on the list. Hurrah, you think, I've found it!

Except that IBS Tales is written solely by me, and I often make mistakes, being a human bean. I've written that bleeding is a symptom of IBS, when I meant to write that bleeding is rarely a symptom of IBS. And you actually have cancer.

Now, that of course is an extreme example, but it's perfectly possible. And what about celiac disease, or colitis, or Crohn's disease? Are you able to see up your own bottom? If not, you're probably going to need a colonoscopy, and that's not something you should attempt in the living room.

And if you do have, for example, celiac disease, when you've just randomly decided you have IBS, then you're throwing away the chance to feel completely better, just for the sake of a doctor's visit. Celiacs stop eating gluten, and then they feel fine. That's it. Why on earth would you pass up a chance to get better that's so easy?

So, that's that - diagnosing any medical problem over the internet is plain crazy, and if I catch any of you doing it, *especially* if I catch any of you using IBS Tales to do it, then I'll personally come round and eat your gerbils. That's how strongly I feel about it.

Now that's out of the way, let's go back to the second stat of that survey, the 48% of people who would think twice about going to the doc with a sexually transmitted disease or a bowel problem. Now, that one I can understand a bit more, as long as people think twice but do go to see the doc in the end.

I mean, no-one wants to get their genitals out on the table, and no-one wants to talk about their bowel (except me, but I'm special). I do get that, and although my own embarrassment has rather worn off now after so many years as a sufferer, I do remember sitting in the doctor's office and cringing as I tried to explain myself. It's no fun.

I think the most useful thing to do though is to try to imagine it from the doctor's point of view. There are literally millions of people with IBS. Millions. Plus all those people with the other bowel disorders, plus people with everyday constipation or diarrhea. And then there's people with herpes, and genital warts, and hemorrhoids, and bizarre things growing on their buttocks.

I'm willing to bet that there's not a doctor in the country who goes for more than a few hours without hearing something disgusting, or seeing something gross, or poking their fingers into pus. These are not people who sell Prada handbags in Harrods - these are people who deal with bodies falling to bits and decrepitude. And they've seen it all before.

So, please, please go to your doctor and tell them all about your bowels. They're honestly not sitting there and laughing at you, or thinking "Well, I liked this person when they came here for some headache tablets, but now they're constipated I no longer value their time". They're thinking "Right, IBS, let's look at your drugs, did you have that colonoscopy, did you try the fiber drink?". And that's not scary. I promise.

IBS Chat is a new book which has been written entirely by IBS sufferers - and without them really knowing it! No, they haven't been hypnotised by an evil megalomaniac cyber-sheep and forced to talk about their bowels - stop being silly. They've just contributed to the rather wonderful IBS Self-help Group bulletin board, and now the best, most supportive and most knowledgable posts from that board have been collected into a book.

Now, perhaps the first question you might ask is why you would bother to buy a book version of a website, when the website already exists. The answer is, of course, editing. The IBS Self-help Group now contains thousands upon thousands of posts, if not millions, and while that fact makes it a great resource in its own right, it does mean that sometimes it can be hard to find what you're looking for. But no longer!

The book has been collated by Jeff Roberts, the founder of the IBS Self-help Group, and Barbara Bradley Bolen, a clinical psychologist and author of Breaking the Bonds of Irritable Bowel Syndrome. The idea behind it is very simple - chapters are dedicated to various different aspects of IBS, such as diarrhea, constipation, diagnostic tests, medication, hypnotherapy etc etc, and then the best posts and threads from the bulletin board are arranged neatly within.

Personally I'm a big fan of things written by IBS sufferers for other IBS sufferers, and the whole reason I started IBS Tales was because I didn't want to read any more books by doctors who were well-meaning but remote, I wanted to read stuff by the people who were actually living it.

There's a real power in reading page after page after page (after page - you get your money with IBS Chat, it's over 500 pages long) written by people who are Just Like You. You begin to realise that most IBS sufferers have the same challenges and problems and bizarre things said to them by well-wishers, and that far from being abnormal we're part of a pretty huge club.

Not only that, you can pick up some great ideas for treatments - there's good coverage for example of the calcium and magnesium supplements that have proved so useful for so many people, despite rarely being mentioned by our doctors.

So, IBS Chat is definitely a book to add to your IBS reading list. My only gripe really would be that there's no index, but the chapters are so well-organised that this isn't much of a problem, and of course you can always look the subject up online.

Buy IBS Chat from Amazon.com

Well it's all gone a bit Christmassy now and I'd rather not get into great reams of IBS stuff at this fluffy time of year, so I thought I'd subject you to one of these random blog posts where I just tell you a bunch of facts about me that you never knew (and never wanted to know, probably, but here you are anyway).

Feel free to add your own interesting facts in the comments section to let me get to know you too!

1. I like sheep very much.

2. This year I bought a teddy who is dressed up as a duck, and I think I love him more than I am supposed to. (His name is Benny).

3. I have never smoked a cigarette.

4. I have never been on an aeroplane (this is somewhat IBS-related), although I have been in a helicopter.

5. After being frightened of cooking for many years I am now learning, and am able to gut fish myself.

6. When I was eight I broke my ankle when I was hit in the head by a football and fell down in a strange position.

7. I have at least 30 pairs of socks, most of which have daft things on them like Shaun the sheep, Eeyore, laughing snails, etc etc. Every time I do laundry I promise myself that I will throw them all out and only buy identical black socks from now on so I don't spend three hours matching up the pairs.

8. My hair is brown but I have a number of white hairs in patches. I am 29.

9. I was once in a hallway at university when Germaine Greer walked past. She looked grumpy.

10. I have two reccurring dreams - one where I fail my degree because I have forgotten to turn up to a poetry class for an entire year, and one where it is Armageddon and the world ends in an exciting manner (so far I have had floods, lightening bolts from the sky, and random piles of dead bodies for no apparent reason).

11. I wear glasses.

12. My mum sometimes reads this blog to check that I haven't collapsed in a heap. (Hi mum!).

13. I hate clothes shopping, and I haven't bought any clothes this year at all. Luckily my mum normally buys me pants for Christmas. (Hi mum!).

14. I have been inside Brixton prison.

15. I am good at spelling. I am rubbish at crosswords.

16. I once met Martin Amis and he told me not to read "Sophie's World" because it wasn't very good, so I didn't.

17. My mobile phone is one of those rectangular Nokia phones that was very fashionable about seven years ago.

18. I am quite careful with money. (See 17.)

19. I have a goldfish called Flufflesven who is at least nine years old and lives with my parents.

20. I passed my driving test on the second attempt and have not driven since.

Fellow IBS sufferer Tim Phelan is very kindly offering three copies of his personal IBS memoir, Romances, Riches and Restrooms. Tim's book is a very well-written account of his years of dealing with IBS, and was self-published earlier this year, but it was so successful that it's been picked up by a publisher and is now available in a new edition.

I gave the book a glowing review earlier this year, and it's a book that any IBS sufferer can identify with, from the tales of mad dashes for the bathroom to the problems with bosses who think we're slackers because we don't want to go on trips.

Tim will personally sign the copies for the lucky winners, and all you have to do to enter is answer a simple question about Tim's life:

"In what year did Tim graduate from Washington and Lee University?"
ENORMOUS HINT: you might want to have a look at Tim's website.

To enter the competition, just send your full name and the answer to that question to sophie@ibstales.com before midnight on 8 December. Entries are welcome from anywhere in the world. I will then pick three winners at random and email them directly to let them know they've won. Good luck!

And for those of you who would like more details of the book or to make a purchase, just visit these Amazon links:

For USA sufferers

For UK sufferers

UPDATE: This competition has now closed and the three lucky winners have been notified - sorry if you didn't win this time, but you can still order Tim's book through the links listed above.

I've seen quite a few strange adverts for IBS products over the years, trying desperately to advertise laxatives or anti-diarrheals without mentioning the words bowel, diarrhea, constipation, toilet or poo.

And the ad I just heard on the radio for Dulcoease is a real master of this genre. Dulcoease, for the uninitiated, is a stool softener, and the advert involved a girl and a group of her bubbly friends (because you always buy stool softeners in groups, it doubles the fun) going to the local pharmacy, and then noticing how attractive the pharmacist was, and saying "Check out the talent here too!", and collapsing into a giggling fit.

Because a good time to pick up men is right after they have provided you with crap-related products, and the pharmacist guy was thinking "Wow, I'm definitely in there - it's a shame her stools aren't very soft, but I shall love her in spite of her flaws."

The IBS Network is the only charity in the UK dedicated solely to IBS sufferers, and it does a great job - I often refer people to its helpline, staffed by specialist IBS nurses, and it produces a range of newsletters, leaflets and other publications about IBS. Self-help groups are co-ordinated through the Network, and the people who work there are lovely and always very helpful.

However, they have recently done something which I consider to be a Very Strange Thing. They have changed their name from the "IBS Network" to "The Gut Trust".

Now, to me, the "IBS Network" sounds just fine. It tells you that they're for IBS sufferers, and the network part sounds helpful and connected. It's straightforward and to the point.

But "The Gut Trust" doesn't give you the faintest clue what it's for. I suppose it does sound like an organisation for people with gut problems, but there are hundreds of gut problems, and I want one just for IBS and not for Crohn's or coeliac or colon cancer or anything else.

Plus, when you say it out loud it sounds like "Gut rust". Which may well be a nice description of the way my intestines feel sometimes, but it's not particularly helpful.

This is how the IBS Network have explained the name change:

"The bad news is that very few people know about us. Even if they do hear our name, they don't know what we do (is the IBS Network a bank? Is it a computer software company?). They don't like talking about bowel functions.

The first problem is the name. As anyone who tries to sell anything will tell you, a name that 'does what it says on the tin' is vital. But it must also be a name that is immediately recognisable to the wider world, which 'The IBS Network' is not. So the first decision we have had to make is the most difficult. After months of research, and months of work, we have decided to change our name. The new name is clear, utterly unambiguous, and uses words the rest of the world understands.

Changing the name, though, simply means that it is easier for people to understand who we are and what we do. After ten years, our look and feel had become confused. If we are to get more members, and be seen in the wider world, we must have a consistent look and feel so that we are immediately recognisable."

I have to say, I couldn't really disagree with that more. The Gut Trust is not clear, and is certainly not "utterly unambigious" - in fact, it is the exact opposite. It makes it harder for people to understand, not easier, just like it would make it harder for people to understand the purpose of my website if I changed the name to Gut Tales. It's called IBS Tales 'cause I have IBS. That's all.

Maybe the IBS Network wasn't a name recognised by the wider world, but I really don't understand why the Gut Trust will be more recognisable. Surely the only way to raise awareness of the name is through more publicity; the name itself can't do that alone.

What does anyone else think - am I being too harsh on the old Network, who I really do have a lot of respect for?

Just a warning that some people over at the IBS Self-help group forums are talking about the fact that they all ordered Zelnorm from an overseas pharmacy and have now been hit with credit card fraud, eg: orders showing up on their card statements that they haven't made.

I do think we all need to think very carefully before ordering meds from overseas or international pharmacies, especially when we know full well that the drugs we are ordering should not be available without a prescription. Quite apart from the fact that you could end up with pills made of sugar (if you are lucky), you could also find that you are offering your credit card number to some very unscrupulous people. Buyer beware, as ever.

The conversation is going on within the constipation forum, here's a link:
http://www.ibsgroup.org/forums/index.php?showforum=4

I had to flag this up - a new reader of this blog left a comment (thanks to all commenters by the way, it's great to get feedback) and told me about a conversation that took place during his last doctor's visit. I hope he won't mind me quoting it here, but I wanted to mention it because it's one of the worst examples of patient care I've ever seen in my life:

Doctor: "We've tested for Crohn's, colitis, celiac, etc...and everything looks OK. It would seem you have Irritable Bowel Syndrome."

Me: "OK...What's that?"

Doctor: "It's hard to define. It would be better if you looked it up on the internet."

Me (slightly stunned by the previous answer): "Is there a treatment?"

Doctor: "Diet management. You have to learn to live with it. Try eating things that don't bother you."

Wow. Just...wow. A disorder that's so hard to define you need to look it up on the internet, but the doctor hasn't bothered to look it up on the internet himself? What's that all about - surely the whole point of the doc is that he's the medical expert who helps explain hard-to-define stuff to plebs like you and me.

And surely (quite rightly) there are lots of doctors who actually hate it when their patients look stuff up on the net, because they fill their heads with all kind of nonsense from all kinds of unreliable sites? I mean, I've read stacks of IBS information on the internet, and if I believed half of it I would now think that IBS was caused by fizzy drinks, anger at the family, and unresolved emotional tension, and the treatment was to undergo a three-month colon cleanse and take coffee enemas once a fortnight.

That's just scary.

You know that thing where sports commentators are watching their baseball/football/lacrosse/whatever people play in your part of the world match, and they say something like "Wow, that Portchester guy is the best damn lacrosse player I ever saw and he's gonna get the puck in the sweepnet any minute", and then the Portchester guy immediately falls over and breaks all the bones in his body?

I believe it's called the commentators' curse, and I seem to have fallen victim to its close cousin, the bloggers' curse, this past week.

No sooner had I written an entry saying I was so well I didn't have anything to write about, my intestines gave me something to write about. They've very helpful like that. Sometimes they even make the bed.

Now, it has to be said that I may have contributed to my own demise here, because on Sunday night I dropped my magnesium intake down from 450mg a day to 350mg a day. This was because for several weeks, perhaps longer, I had been verging on the D side of things, nothing major but not quite normal either, and so I was trying to correct the balance. In fact, I would say that since I started taking the 450 dose I had been slightly on the D side of normal, only just, but still a little off base.

However, on Wednesday and Thursday things seemed to swing too far the other way though, and I had a particularly pleasant session in the bathroom during which I can only assume that a small and badly co-ordinated hippo was attempting to climb out of my sphincter.

I took that as a warning that my body was objecting to the drop in magnesium, so I went up to 400mg a day, and for the last couple of days I have felt fine. I am fairly hopeful that I can keep things on an even keel with 400mg a day, or if not perhaps 400mg some days and 450mg when the hippo situation arises.

Of course, knowing my luck and the sensitivity of the IBS intestine, my ideal level of magnesium is probably 413mg a day, or 427.00782mg a day, in which case I have a small problem. But still, at least I have felt fine again for the last couple of days, and at least the magnesium actually seems to have an effect on my gut, which is encouraging. And I've made a nice hutch for the hippo.

So, my IBS continues to be fairly well under control, which is very cool but it does mean that I don't have a lot of personal IBS stuff to write about at the moment, so I thought I'd ask you guys how you are all doing!

So how are you? Has it been a good week, or a bad one? Is there anything you'd like to vent about, or discuss, or ask me? Anything you just wanna get off your chest? Did you have a nightmare diarrhea attack, or a ridiculous comment from a colleague that you want to make fun of?

Please let me know how you are all doing, and if there is anyone who's having a particularly bad time then I'll offer any support I can (not medical advice of course, but emotional support and resources etc) and we can all cheer each other up. Hopefully.

So just click on the "Your comments" link if you would like to let me know what's going on in your own IBS universe.

The American Food and Drug Administration (FDA) have confirmed that they are allowing Zelnorm to be prescribed under an Investigational New Drug (IND) program. This means that doctors can prescribe the drug to patients who fit certain guidelines - in this case Zelnorm is only being offered to women who are younger than 55, who suffer from IBS or chronic idiopathic constipation, and who do not have pre-existing heart problems.

Zelnorm will only be prescribed if your doctor decides that the drug is "medically necessary", which presumably means that the IBS or constipation is relatively severe, and that alternatives such as Amitiza cannot produce the same results. Patients also need to sign a consent form.

So - it's good news that the FDA have issued a press release to confirm that this program exists, and it would be a useful page to print out and take to your doctor if he or she has been dragging their feet, especially as the release contains details of the numbers your doctor should be calling to apply for the program. It's bad news though if you are over 55 or a man. I guess the age level could be down to increased risk of heart problems in older people, but I'm not sure why they are refusing access to men, although of course with more women than men suffering from IBS it may be that they just have more data on the use of Zelnorm in women.

However, the FDA do say that even for those people who do not qualify for the IND program there may be hope, as an "alternative access option available through the FDA" is mentioned on the Novartis Zelnorm homepage, along with a number to call, although this alternative option is only available for patients who have "an urgent need for Zelnorm based on a life-threatening or severely debilitating condition".

The Novartis page also confirms the rather startling information that if you are approved under the IND program, you'll get the drug for free: "Novartis will provide Zelnorm at no cost to the patient". Each patient will receive a month's supply of the drug at a time, with a doctor's reauthorization needed for each new supply.

I know that some sufferers have been ordering Zelnorm from Mexico, and even travelling there to buy it in person, but even with a bit of bureaucratic hassle I think the IND program has to be the first thing to try. Apart from anything else you will know that you are getting the correct drug, and you will also know that you are using it under proper supervision - and that your use of the drug is being recorded on your medical records.

I'm still, thankfully, feeling very well on my current IBS regime, but I'm now at the stage where I'm trying to tweak it a little bit just to find out which bits of the regime are actually helping me, and which bits are just there out of habit. This situation comes about because I tend to try two or three things at a time, because when your symptoms are bad you just want them to be over, but then you end up not knowing which of the two or three things caused the change in your symptoms, or whether one of them is helping and the other two are just cancelling each other out, or what the heck is going on in general.

My basic treatment at the moment consists of: a gluten-free diet, Normacol fibre twice a day, Celevac fibre twice a day, magnesium citrate tablets 150mg in the morning and 300mg at night, and a Vitamin D capsule 400IU per day. For any new readers of the blog I should tell you that I am mainly an IBS-C person, although I get occasional dramatic D attacks from time to time for added amusement.

Now, the gluten-free thing is fairly sacrosanct, as that has been tested a few times and I do seem to do better in a gluten-free zone, so I don't intend to mess with that. But do I really need to take two types of fiber? And could I reduce my magnesium dose a bit?

I did try stopping Celevac altogether, just to see what would happen, and what would happen wasn't really very pleasant and I seemed to get more sensitive intestines and (look away now if you're eating) looser bowels, so that didn't seem terribly productive, and so I went back on it and felt fine again. And it is good to know that something is actually having an effect on your body, and you can actually change the functioning of your intestines by swallowing different things.

One the aspects of IBS which I have found most difficult to deal with over the years is the feeling that you have absolutely no control over your symptoms, just because you cannot figure out which foods are helping, or which drugs, or which supplements, because the symptoms seem to be so random. And without this cause and effect link, you have no idea how to change your habits for the better, and therefore no control.

So it would be nice to know exactly what effect each of these products has on my body, and in an ideal world I would stop taking them all and then just take each of them one by one, but of course I'm far too scared for that as it might bring the symptoms back, so I'm going to do it the opposite way and stop taking one thing and then reintroduce it if needed. I would very much like seven or eight clone copies of me to use for testing purposes, so I shall ask for those for Christmas. But until then this will have to do.

I recently stumbled upon a rather unusual website which lists the various health problems of every US president in history. Obviously the first thing I did was to look for digestive woes, and my word, did these men have some digestive woes!

I've chosen some of the best gastrointestinal malfunctionings and listed them below. I have to say I find it quite cheering to know that you can be the leader of the free world and still have hemorrhoids. Maybe that's just me.

Anyway, here's the list...

Thomas Jefferson - "life-threatening" constipation after a severe illness.

Andrew Jackson - chronic abdominal pain and diarrhea for years, possibly dating from an attack of dysentery contracted from the swamps of Florida (could this be the first ever recorded case of post-infectious IBS?!)

James Garfield - had an anal fissure which kept him in bed for several weeks and needed an operation. Had a "weak stomach" for years (another IBS candidate?). Was fed through the rectum following an assassination attempt in 1881. Don't really want to know why.

Chester Arthur - suffered from abdominal pain and indigestion. But the most interesting fact about Arthur is that he was diagnosed with a kidney affliction called "Bright's Disease", which is no longer recognised in modern medicine because "it lumped too many different kidney disorders into one disease". Perhaps the same is true for IBS, and in a hundred years we'll no longer have IBS, but one of a handful of individual disorders?

Franklin Roosevelt - had severe iron deficiency anemia, which was ascribed to bleeding hemorrhoids.

Dwight Eisenhower - suffered from Crohn's disease, and also had a bowel obstruction at one stage.

Jimmy Carter - was forced to leave a Christmas party in 1978 "to receive emergency treatment for a painful hemorrhoid that left him almost completely incapacitated". Had first suffered from hemorrhoids as a young man.

Bill Clinton - had a colonoscopy for rectal bleeding (nothing found). Suffered from heartburn and reflux.

George W Bush - had a hemorrhoid while serving in the National Guard. Also had colonic polyps removed.

And finally, John F Kennedy, who I've saved until last because as you'll probably know, JFK was surprisingly, almost terrifyingly unhealthy. His list of malfunctioning bits and pieces included a back problem which was so chronic he had to wear a back brace most of the time, and Addison's disease, an endocrine disorder which almost killed him.

For us intestinally-demented folk though, JFK's most interesting malady was a prolonged gastrointestinal problem, which was treated with steroids and at least three different anti-diarrhea medications, including Lomotil.

The first record of JFK's digestive distress dates back to when he was just 17. Later on, when he was in the Navy, it's fascinating to see that his disorder was described as "severe spastic colitis" - spastic colitis being, of course, the old-fashioned name for irritable bowel syndrome. Could Kennedy have been one of us?

There's some speculation that JFK might actually have had undiagnosed celiac disease, or an inflammatory bowel disorder such as Crohn's disease, although examinations to look for inflammation found no evidence of this. But there's no doubt that he had some pretty nasty diarrhea attacks. And in fact, just before and just after the Bay of Pigs invasion, Kennedy was suffering from "constant, acute diarrhea" and was treated with anti-spasmodics, a puree diet and pencillin.

So, the next time you've got stress-induced diarrhea, and some clown tells you that you should relax and it would all go away, just say "Well, If President John F Kennedy can't control his own bowel then neither can I".

(You can view the Presidents' complete health records here.)

I have just completed a complete redesign of the main IBS Tales site, and it's now online in all its fancy-pants glory (well, it's all online anyway). You can have a look by going to the usual address.

Now, the main look of the site is the same - same colours, same photo of the strangely-blue trees at the top, same two column layout, but I have changed a number of things in order to (hopefully) make the site more user-friendly and give you a better holistic IBS Tales experience, as someone pretentious might put it.

I am quite proud to say that the entire site has been coded by me, by hand (well, apart from a few tiny bits of code to do advanced things like sign people up for the mailing list). It's taken me about four months, and a whole lot of evenings staring at the screen trying to figure out why various bits have unexpectedly turned purple, but I did it. The site may not actually look too different from the outside, but the code has drastrically changed.

The question now of course is whether you guys like it and find it easy to use. If you do have any feedback please do leave a comment on this entry or email me directly. I'm happy to consider all suggestions and comments, and things can still be changed if you hate them!

I'll just expain a few of the things that I've changed, and the reasons why:

1) I have made the site into what's called a "fixed width" design, which means that the website stays the same width whatever the size of your browser window, rather than the old "liquid" design, which used to stretch to whatever size browser window you had open at the time.

The liquid design was OK most of the time, but people these days often have 17", 19" or even bigger monitors, and on a large screen I think that sites with a lot of text and therefore huge long lines, like IBS Tales, can be hard to read.

So I went for the fixed width instead, which will hopefully suit all shapes and sizes of monitor, and be easier on the eyes.

2) Printing arrangements. I know that some of you like to print out pages of the site, to keep a story you particularly identify with, or show something to a disbelieving loved one. Until now the design of the site meant that you got a printout which often cut off words on the right-hand side of the page.

This is completely fixed now, and you can print out any page of the site cleanly. Plus, I've set it up so that you won't waste printer ink on things like the logo and picture at the top of every page - you'll just get the important part, ie: the text.

3) Changing navigation (in other words, the bits you click on). The main navigation bar at the top remains basically the same, but I have changed the links on the left-hand side which take you to each individual page within the sections for men, women, and teenagers.

The old site used to have a link for every single page within a section, and these links would run down right down the left-hand side of the page. The trouble with this was that for some sections, such as the women's sad tales section, there were at least 45 individual pages...which just left you with a huge long list of links taking up screen space.

There are now drop-down boxes so that you can just choose a particular page and go, or alternatively you can still just read through the stories in order by using the "Next page" or "Previous page" links at the bottom of each page.

4) Story removal. I have transferred almost all stories from the old site across to the new one. However, when I was going through the pages I came across two fairly old stories which began with something like "I have self-diagnosed IBS, although I have never seen a doctor".

I have removed those two stories - the last thing I want to do is give people the impression that it is OK to self-diagnose IBS, it is categorically NOT a good idea to do this, and self-diagnosis of any condition is more likely to be wrong than right.

Like I say, this only applies to those two stories. There were a few more where people said that they had not had a definite diagnosis of IBS but had been through lots of tests or seen specialists etc, and it was more a case of their docs saying "Yeah, probably IBS" rather than someone solely diagnosing IBS by themselves - and I have left these stories on the site.

I think that's the best way to do it, and I hope the thinking behind this makes sense.

5) Adding a "Support This Site" page. I do sometimes get messages from people who would like to know what they can do to help IBS Tales because the site has been useful to them, so I have added a short page of possible suggestions - just simple things like linking to the site, telling me about any spelling mistakes you find, and using a particular Amazon link for any purchase, because IBS Tales then gets a small commission for each item.

OK - that's all I can think of for now! Like I say, if there are any comments, then please do get in touch. I'd particularly like to hear from anyone who finds that the site looks a bit weird on your computer - I've tested the site in as many browsers and different set-ups as possible, but there might be a few I've missed.

First of all, I just want to remind you that if you want to make a complaint about the withdrawal of Zelnorm you should write to the FDA (addresses are below in the entry titled "Fight for Your Right to Zelnorm"). I've had quite a few comments on that entry saying things like "Please reconsider" and "Please bring Zelnorm" back, which is fine if you're just expecting me to read them, but not fine if you're thinking that the FDA will hear these pleas. So make your voice heard - write to the FDA today!

For those of you who are really struggling without Zelnorm, it may be worth asking your doctor about the so-called "Emergency" program, where doctors in the US can request the use of medications which have been recalled (or which are still going through clinical trials) if they believe it is in the best interests of the patients.

I'm afraid I really don't know how restrictive this program is, and how many of these requests are accepted. However, if Zelnorm was the right drug for you, and you are aware of the possible side effects, this might be a route to consider.

Carolyn is an IBS sufferer who is currently trying to get hold of Zelnorm through the Emergency program, and this is what she says:

"So here is the deal with the Zelnorm. I just heard back from my GI guy. The physician has to call the FDA. Then the office has to fill out some papers to get it approved by the FDA, and you can then get it on a month-to-month basis, but you have to have the physician apply for it each month.

Fortunately, my GI guy is willing to do this. I don't know how long it takes for this to actually get to the patient and I assume you have to pay out of pocket."

I've fired off an email to the PR people at Novartis to see if they can verify the phone number for the FDA that your doctor would need - I believe it is this one:

FDA: 1-301-827-4570 or toll free at 1-888-463-6332.

Please remember that this number is for your doctor to call, and of course you'll need your doc's approval to get the medicine anyway as it is still prescription-only. If anyone does succeed in getting Zelnorm under this program please do leave a comment to let us know, or email me direct. Good luck!

If you have been affected by the recent Zelnorm/Zelmac recall then I would encourage you to register your complaint. This post contains the contact details that you will need to do just that - many thanks to Jeff Roberts at the IBS Self-Help Group who has provided these names and numbers.

The best thing to do is to either contact Novartis, the manufacturers of the drug, or the Food and Drug Administration (FDA), the drug regulators who actually took the thing off the market. Or, of course, you can contact both.

I would keep your messages fairly short and focused, perhaps describing your life with IBS before Zelnorm, during Zelnorm, and after Zelnorm! I would also describe how IBS interferes with any aspects of your daily life such as holding down a job or raising a family, and also how many other treatments you had tried before finding Zelnorm.

Making your voice heard really is a worthwhile thing to do - IBS sufferers previously campaigned for the return of the IBS-diarrhea drug Lotronex after it had been pulled by the FDA, and were successful, so these kind of patient-led campaigns really can work.

I don't want to minimize the experience of anyone who has experienced side effects from Zelnorm, and of course we should all be concerned about the safety of the drugs we are taking. But I do think we should make it clear how many patients have been helped by this drug, and how sparse the alternatives are for people with long-term, chronic IBS.

It's also worth pointing out that we don't necessarily have to ask for a complete reintroduction of the drug. At the moment the FDA has entirely removed the drug from the market, making it inaccessible to everyone, but it would be possible for them to make the drug available to a more restricted group of patients, and the FDA have said they are going to consider this. We need to make sure that they do!

So, these are the details to use (all USA contact details)...

For the manufacturers Novartis, you can call 1-800-742-2422, or call the Novartis Customer Interaction Center at 888-NOW-NOVA (888-669-6682).

For the FDA, you can write to:

Dr. Stephen K Galson, M.D., M.P.H.
Director, Center for Drug Evaluation and Research
U.S. Food and Drug Administration
5600 Fishers Lane, Rockville MD 20857-0001

and/or

Douglas Throckmorton, M.D.
Deputy Director, Center for Drug Evaluation and Research
U.S. Food and Drug Administration
5600 Fishers Lane, Rockville MD 20857-0001

After the recall of Zelnorm, which now extends to Canada and Australia as well as the United States, there are a lot of IBS-constipation sufferers who have been left in the lurch. I've had a number of really quite distressing messages from sufferers who don't know what to do without Zelnorm, and so I thought I should write a post about what possible alternatives to Zelnorm there are, and what people have been telling me they are using already.

Long-term sufferers may have tried a lot of these before, but I hope I can offer at least one new suggestion. This post comes with the usual warning message that I am not medically qualified in any way, and you should check with your doctor before trying any of these treatments.

Some of the medications may not be available in Australia and Canada (all are available in the USA), so ask your doctor about your options.

Amitiza is a fairly new medication which was designed for chronic constipation rather than IBS, but is being used by a number of IBS sufferers. There does seem to be a side effect of nausea in some people, although that might be lessened if it is taken with a meal. Reviews of Amitiza so far have been mixed, but that will usually be the case with most drugs as individuals and symptoms can vary so widely. Some people have found it helpful.

Miralax is an osmotic laxative ("osmotic" just means it draws water into the bowel) which used to be prescription-only in the USA but is now over-the-counter. Miralax does seem to be a fairly powerful laxative and there are some positive reviews on my IBS treatment website.

Magnesium supplements are available from most healthfood stores and are used by quite a number of IBS-C sufferers with good results. Magnesium oxide and magnesium citrate seem to be the forms of magnesium with the best results (I take magnesium citrate myself), and the dose is usually around 400mg a day to start off with, perhaps one tablet in the morning and one or two at night, and then alter the dose as needed.

Milk of magnesia is a fairly mild laxative, but one that does seem to be gentle on the stomach and not cause pain. Not to be confused with plain magnesium tablets.

The IBS Audio Program 100 is famous in the online IBS community for being effective and safe, and I've read many messages from people who have used this program with good results. It's a simple self-hypnosis program (hypnotherapy has at least a dozen clinical trials to show it works for IBS) which you listen to at home. It comes on CD, and can be delivered worldwide.

A gluten-free or a dairy-free diet (or both combined) do seem to help a number of sufferers. It's probably fine to test this on yourself for a few weeks or so by cutting out all dairy and gluten and seeing what happens, but if you are going to do this for a longer period of time then I would ask a doctor or qualified nutritionist/dietician for advice on how to replace the foods you have excluded.

And if anyone does try any of these treatments, or has any other Zelnorm/Zelmac alternatives which they are using, please do post your views in the comments section to help fellow IBS sufferers.

Zelnorm, the drug for constipation-predominant IBS, has been withdrawn in the US. It has never been available in the UK, but I know it has helped a great deal of people in America and other countries as well, and IBS drugs are so thin on the ground anyway that this is really not good news.

It's also eerily reminiscent of the bizarre situation which surrounded the IBS-D drug Lotronex, which was approved and then withdrawn and then approved again after a campaign by IBS sufferers. Looks like we might have to start fighting again...

The reason given for the withdrawal is that the drug was linked in a retrospective review of the entire clinical database of Zelnorm patients to a higher risk of heart attacks, strokes and chest pain. The review compared the incidences of heart problems in patients taking Zelnorm to the number of incidences in patients taking the placebo. This is the first time I had heard of any major concerns over cardiovascular side effects from Zelnorm, although there had been concerns over ischemic colitis.

In a statement on their homepage, the manufacturers Novartis say this:

"The data, which were reviewed by independent experts, showed that events occurred in 13 out of 11,614 patients treated with Zelnorm/Zelmac (0.11%), compared to one case in 7,031 placebo-treated patients (0.01%). All patients affected had pre-existing cardiovascular disease and/or CV risk factors."

Now, 13 out of 11,614 patients seems to me to be a fantastically tiny number, but apparently it is high enough to make the link statistically significant, and therefore the FDA asked for the drug's withdrawal.

I'll update this entry as I get more info.

Update: The FDA have issued a statement which includes advice to anyone currently taking Zelnorm...

"FDA is currently advising patients who are using Zelnorm to contact their health care providers to discuss treatment alternatives. Patients who are taking Zelnorm should seek emergency medical care if they experience severe chest pain, shortness of breath, dizziness, sudden onset of weakness or difficulty walking or talking, or other symptoms of a heart attack or stroke."

Now that sounds like a very alarming statement, and obviously anyone who is worried should contact their doctor, but the fact remains that only 13 out of 11,614 patients reported heart issues, so this is not a reason to panic.

The FDA also say the following:

"FDA will work with Novartis to allow access to Zelnorm as an investigational drug for patients with no other treatment options where the benefits may outweigh the risks. FDA has also indicated to Novartis the possibility of considering limited re-introduction of Zelnorm at a later date if a population of patients can be identified in which the benefits of the drug outweigh the risks."

The "benefits outweighing the risks" argument is the main source of contention in this kind of situation. Almost all drugs have side effects, and when we are talking about non-fatal conditions such as IBS, the severity of those side effects is weighed against the perceived severity of the medical condition itself. I think it would be fair to say that the impact of IBS is often under-rated, which may mean that the FDA are too quick to pull drugs for IBS because they believe that we can live pretty well without them...

For more info see the Novartis website or the FDA website.

I started a big old debate when I criticised a supplement called Digestrol a while back, and some people strongly disagreed with my view of the product, saying that it had worked for them so I shouldn't criticise it.

Now, I'm quite happy to hear opposing opinions, and if any treatment works for you then that's grand. What I have been a bit dismayed about is the number of people who seem to believe wholeheartedly in the power of anecdotal evidence, and the flimsiest of anecdotal evidence at that.

Anecdotal evidence is just what it sounds like - evidence which is based on anecdotes, or word-of-mouth information. So, my friend Bob might tell me that a particular garage is fantastic at fixing cars, because they fixed his car last week, and now it works. That's all there is to it.

The argument is that if Bowlex works for you, or it works for a handful of other sufferers, then this is proof that Bowlex works at least some of the time, and therefore it is beyond criticism. Now, as the owner of an IBS website I hear masses of anecdotal evidence, and I therefore have proof that every kind of treatment from crystal dowsing to the wearing of magnetic bracelets works for IBS. People have told me so; it must be true.

A sister argument says that I cannot have an opinion on any IBS supplement that I have not tried myself, because if I haven't personally tried it there's no way for me to give a personal opinion (or no way for me to tell an "anecdote"). I must personally quoff every last pill and potion available, observe my own symptoms, and then report. There is no other righteous way.

We often use anecdotal evidence to make decisions. But if we rely on anecdotal evidence alone we're opening ourselves up to all kinds of problems, and this is especially true if we rely on anecdotal evidence when we're choosing a new IBS treatment. Here's why...

Bob tells you that the garage he went to is fantastic. His car was broken, and now it isn't. So that's great. This is proof that the garage have some kind of skill at fixing cars, and it is proof that on this occasion they managed to fix Bob's car.

But what about if you did a survey of the last 1,000 customers who used the garage? If you got 1,000 replies strongly agreeing with Bob, then that's all the evidence I would need as a consumer to tell me that that's a great garage.

You probably wouldn't get that though - you'd probably get some people who agreed with Bob, some who disagreed, and some in the middle. The number of people in each category would tell you how good the garage actually was. You might get 999 people who say the garage painted their cars bright pink and they're really not that happy about it, and one person (Bob) who was completely happy in every way.

So - the evidence of one person is not really evidence at all. And if you apply this to medicine, this means that if one person tells me that wearing sofa covers on their heads has cured their diarrhea, this doesn't in fact mean that sofa-cover-(on-the-head)-wearing is a legitimate IBS treatment.

And, in the case of IBS, and indeed other medical conditions, there are many other reasons why I shouldn't be convinced by the evidence of one person. First, IBS symptoms come and go, so we sometimes assume our new Bowlex pills are working when really we'd feel just the same without them.

Next, the placebo effect applies to all kinds of medical treatments, and we all know how powerful sugar pills and even fake surgeries can be - when we think we're going to feel better, we often do.

Next, IBS symptoms vary a great deal between sufferers. For example, I have IBS-C with a bit of diarrhea thrown in sometimes. I tried hypnotherapy twice, and it didn't do anything for me. Proof that hypno doesn't work for IBS? Or proof that hypno doesn't work for me? Conversely, I find a gluten-free diet very helpful. Is that proof that gluten-free diets work for IBS?

Now, I do have to say that there are times when anecdotal evidence is very useful. Indeed, my whole IBS Treatment site is based on the idea that anecdotal evidence can be helpful (although I try to post as many reviews of each product as possible, and I also include clinical trial data whenever it is available).

But it is important to recognise the limits of this kind of evidence. Anecdotes are great for getting new ideas for treatments and for comparing notes. Some forms of anecdotal evidence are backed up by science or commonsense which makes them stronger - for example, there are a lot of good reviews of calcium supplements for diarrhea on my site, and that seems logical as calcium is naturally constipating.

But do these reviews alone prove that calcium is a good treatment for IBS? Nope.

The gold standard of evidence is, of course, the good old randomised double-blind placebo-controlled trial, which was developed specifically to reduce or eliminate the influence of things like the placebo effect and the fact that the human body varies from day to day.

Without these trials, without this objective way to evaluate treatments, every time you went to the doctor he would just have to start at the top of a list of IBS treatments and work downwards until something randomly worked. (And OK, yes, that does feel like what some doctors do anyway - except that without the controlled trials, the list wouldn't read "Anti-spasmodics, fiber supplements, hypnotherapy", it would read "Aardvark juice, artichoke puree, bear fur souffle, dog biscuits".)

To be honest, I really don't see why anyone would be happy to rely on anecdotal evidence alone as proof of any treatment's efficacy. Perhaps this is especially true for me because I receive so many anecdotes.

If I were to rely on anecdotal evidence, and I subscribed to the view that there was no objective way to evaluate treatments, you just had to swallow them and see what happened, I would spend my entire time and all my life savings buying pill after pill after magnetic bracelet. And I bet I'd still feel crappy in the end.

Romances, Riches and Restrooms is a new book which chronicles one man's battle with IBS over a period of 17 years. Tim Phelan was fresh out of college and starting his first full-time job when he drunk a cup of coffee, had to rush to the bathroom, and was never quite the same again. Although he couldn't put a name to the illness until years later, he had begun to suffer from diarrhea-predominant IBS.

Tim vividly recounts stories of desperate diarrhea attacks in all kinds of situations, as well as the unusual solutions he has to come up with to avoid the ultimate humiliation of soiling himself in public. These solutions include using an industrial car park as an impromptu toilet, and relieving himself in a public park while getting filmed by a tourist with a camcorder...

Not surprisingly, Tim quickly develops a real fear of being trapped in situations where he can't use the loo, and this makes him more anxious - which of course makes his IBS worse, which makes him more anxious, and so the vicious circle of IBS is in place.

While Tim is dealing with the nightmare of IBS, he is also trying to establish a career and a personal life. Like many people, he is reluctant to talk about his illness, and his little white lies and avoidance of non-toileted situations quickly lead to problems. Bosses are unimpressed when he skips meetings and refuses to take public transport, and girlfriends are equally dismayed when he won't offer them a lift or alter his plans to accommodate them.

The problem of trying to cope with IBS while at the same time keeping it secret - and so often appearing rude or bizarre to the people around you - was one I particularly identified with. I am sure there are at least a dozen people I have met over the years who would tell you I am arrogant, obnoxious or have an uncontrollable eating disorder, when my behaviour was in fact just down to the demands of IBS.

The people in Tim's life range from the bosses who fire him for his lack of commitment, to the girlfriends who are kind and helpful (at least at first). Some of the reactions he recieves were understandable, and some of them just made me fume. One girlfriend tells Tim that he just needs to face his fears about public transport because "It would be nice if you started to act like a man". Another girl genuinely seems to think that a man who drinks peppermint tea is less worthy of her time than a man who drinks espresso. Yeah, that's a good way to choose a life partner.

On top of the bizarre idea that real men can control their own bowels, no matter how sick they might be, the author also has to put up with amateur doctors ("your symptoms are all in your head", "your symptoms are caused by bacteria"), and perhaps even worse, the people who are so ridiculously uptight about a medical condition involving digestion that they want nothing to do with him because of it. (And I want nothing to do with them.)

To try to escape from the IBS trap Tim starts to try various treatments, using everything from Pepto-bismol and Imodium to enemas and colonics to hypnotherapy and cognitive behavioural therapy. There is, thankfully, a happy ending to his story.

Romance, Riches and Restrooms is a very well-written, funny and intelligent book that anyone with IBS will identify with. I would highly recommend it to all IBS sufferers. And if I had the power I would make all the loved ones of IBSers read it as well, as it is a fantastic explanation of how IBS can slowly take control of almost all aspects of your life, however successful or intelligent or confident you are when you first start getting symptoms.

Buy Romance, Riches and Restrooms from Amazon.com

Buy Romance, Riches and Restrooms from Amazon.co.uk

Extra note: I forgot to mention that Tim has his own website.

I've finally got round to doing a few more chapters of my IBS story in podcast format. Sorry for the delay, I have been winning the Nobel Peace Prize/teaching underprivileged kids how to dream/lying around in my underwear (delete as applicable).

So, these podcasts are the second and third chapters of my story. The second chapter covers my years at university dealing with lovely situations like bathrooms shared between 12 people, travelling whilst trying not to crap oneself, and making sure that no-one found out that I had an illness with the word bowel in the title.

The third chapter covers my first full-time job, how I collapsed in a heap after only four months in said job, and how I was officially diagnosed by a specialist who was as much help as a marshmallow trampoline.

Usual deal for listening - either click directly on the link and listen within your browser, or right-click, choose "save as" and download to listen on your computer or transfer to an MP3 player.

IBS and Me: Chapter Two

IBS and Me: Chapter Three

Complete list of my IBS podcasts

Oh dear. A fellow blogger called Shinga has pointed me in the direction of two posts she has made about IGg food intolerance tests, and in particular about the rather inflated claims that some people have for these tests. And this is bad because I really do want to believe in the IGg test, mainly because all the other food intolerance tests I have ever come across are such bunkum, and surely we deserve one easy route to wellness?

But if the thing needs criticising then it needs criticising, and Shinga suggests a number of reasons why the IGg test might not be all that flash. She makes the following points, among others:

1) The one published, peer-reviewed study of IGg testing, which appeared in the journal called Gut, was criticised by a leading IBS expert called Dr Hunter because it produced pretty poor results compared to an old-fashioned elimination diet, where foods are cut out for a week or two at a time. Dr Hunter also said that the mere presence of high IGg levels may not correlate with a bad reaction to that food.

2) The authors of the Gut study responded to Dr Hunter by saying: "It is likely that only a subset of patients are likely to have an immuno-inflammatory basis to their condition and these might be the very individuals who respond to dietary exclusion based on IgG antibodies. This would fit with our results where only a proportion of patients responded despite all having antibodies. This, of course, limits the specificity and usefulness of the test unless such subgroups can be identified beforehand."

So the study authors have agreed that their results were perhaps a little underwhelming. Shinga also quotes a number of health organisations who have made pretty clear statements that they don't recommend the IGg testing (which are, as you would expect, in pretty direct contrast to some of the lovely alternative practitioners who like to support these kind of things 100% and not to really bother about boring stuff like evidence).

I haven't really done justice to Shinga's posts here because it's quite involved stuff and quite late and my brain cells are all settled in their comfy armchairs watching the telly, so if you want to read the posts in full go here and here.

There's still hope for the IGg test, and the Gut authors suggest that it might be useful in a subgroup of patients if nothing else. But I have to say that the more I read about it the more sceptical I get, and that's not usually a good sign, because I tend to start off pretty damn sceptical anyway.

I do often wish that I could do a massive clinical trial which would be me versus the IGg - everyone in the IGg test group would take the York test and follow that diet and see how much better they got, and everyone in my group would give up gluten, dairy, alcohol, caffeine, spicy foods and artificial sweeteners, and we'd see who did the best...

OK, so this entry is annoying me before I've even written it, but I think I have to write it anyway. And it's not going to be a rant about some moron IBS product or some idiot IBS doctor, just for a change. It's actually going to be a lovely, positive, fluffy bunnies dancing in the bright clean morning light happy entry. (You can see why it's gonna be annoying.)

The topic is this: I think that we should all keep IBS in perspective. It's not the worst thing in the world that could happen to us. We should all try to remember this fact.

Now, even as I am typing this, several of my brasher brain cells are firing up their little lungs and screaming at me. "Are you completely off your rocker," they are exclaiming, "you seriously want me to have a sense of perspective about something that has had me in agony for years and ruined my social life and messed up my diet and basically been unbelievably pants?"

Well, yes, in fact, I do. Because I think it helps, and because I think that most of us fall into a trap of self-pity sometimes that we can't get out of, and sometimes that's fine for a while, but othertimes it's just plan daft and stops us from enjoying as much of our lives as we can. I personally have something called my "IBS pit of despair" which I leap into whenever I have a particularly bad time with the bowels, and one route out of the IBS pit of despair is through a sense of perspective.

So hear it is.

Firstly, IBS is not fatal. It isn't going to kill me today, it isn't going to kill me tomorrow. I'm already doing better than someone who's just had a heart attack, or a stroke, or got hit by a truck, or got stuck under something heavy when the fire alarm went off and oh no, it wasn't a drill.

IBS is not progressive. I'm not going to have to go through a humiliating and depressing slow loss of all my faculties. I'm not going to watch myself die. I'm not going to gradually fade away like someone with ALS, I'm not going to choke to death like someone with cystic fibrosis. IBS does absolutely no damage to my body - whatever I feed it, however bad the symptoms are, my intestines are still perfectly intact.

IBS does not rob my of my independence. I don't need a wheelchair, or a carer, or someone to wipe my nose. I don't need benefits or money from the government, I don't need anyone else but me.

IBS waxes and wanes. I have terrible times with it, but I also have good times, and I actually have times when I feel perfectly, absolutely well in every way. There are people with chronic pain who would give anything for a few seconds break from their agony, people with tinnitus who would give anything for a few blissful seconds of silence. Whereas I can pretend that I'm healthy for days and sometimes weeks and weeks on end.

IBS is gaining more and more acceptance as a genuine medical disorder, and the sufferers are gaining more respect. Any doctor who still tells you that IBS is not real or is just a bit of stress is about as credible as Milli Vanilli. And we do get treated poorly by our doctors from time to time, but I'd rather have IBS and get told that it's caused by stress than have clinical depression and get told to get off my lazy backside, or have schizophrenia and get treated like a psychopath.

I'm not thankful that I have IBS, but I do take a mental note every time I see a show with someone with another health disorder, and more often than not I wouldn't swap it. IBS is very painful, very depressing, and can be very difficult to deal with, but the fact remains that I'm better off than a lot of other people, and it might do me good to remember that now and then when I'm sat at home eating my gluten-free cake and feeling sorry for myself.

So, what do you think? Do you think we should all keep a sense of perspective, or would you rather have any other health problem than IBS?

(Just to say, in case there are any non-sufferers reading this, it's probably not a bright idea to run off and tell your friend or loved one that there are worse things in life than IBS. A non-sufferer said that to me once and my spleen immediately ate itself.)