IBS Tales

If you read enough IBS personal stories – and, I would venture to say, I read more IBS personal stories before breakfast than most people do in a lifetime – you quickly realise that there are many shared IBS experiences. From the fear of public accidents to obsessions with our diet to battles with our ridiculously unfeeling colleagues, I’ve read the same experiences over and over again for years and years. This is awful, of course, but also a little comforting, as you begin to learn that your pain is not yours alone, and many other people know just how you feel.

What I haven’t learned, unfortunately, is what causes IBS, because for every IBS patient there is a different story. Some of us get IBS right out of the blue, Bam!, as if from nowhere. Some of us have surgery and suffer from that point on, some get food poisoning and then IBS, some take antibiotics and blame their broken bowels on that…there’s no one route to IBS.

But one thing that did strike me one day when I was reading through all of these stories was how often IBS sufferers talked about their gallbladders, and, more specifically, the absence of their gallbladders.

The gallbladder is a little internal organ that basically stores bile acids that come from the liver. People often have it removed, and you can live perfectly happily without it, except that without the gallbladder the bile has nowhere to go. And guess what? The bile is then shoved into the intestines instead, and that causes diarrhea, and that, I’m afraid, leads to a diagnosis of IBS.

Now, the wonderful thing about ‘IBS’ (I’ll explain my quote marks in a second) following gallbladder removal is that there are specific medications to control the diarrhea that results. Questran, Colestid and Welchol and are all used for this purpose, and often produce fantastic results.

So what’s the problem, if this portion of IBS sufferers can be so easily treated? Well, the problem is that doctors sometimes don’t even mention that the diarrhea could be related to the gallbladder removal, and just diagnose IBS. And even when they do think that the gallbladder removal has caused the problem, they STILL diagnose IBS.

Why is this daft? Well, obviously it’s daft first and foremost because anyone with no gallbladder needs access to the drugs I have mentioned. But it’s also daft because, to me, bile-related diarrhea is clearly NOT IBS.

If we diagnose bile-related diarrhea as IBS, then morphine-related constipation is IBS too, as is diarrhea caused by having half your colon cut out during surgery. In other words, any vague condition that causes gastrointestinal symptoms is IBS, even if we know exactly what the cause of those gastro symptoms is. That seems crazy.

Now, please don’t think that I have any less sympathy for my gallbladderless readers, because your symptoms are just as tough as anyone else’s. And I’m not about to to stop accepting stories and treatment reviews from people with bile-related ‘IBS’, partly because there are so many of you, and partly because patients often don’t realise that bile is the cause of their problems until they do some reading.

But it does seem like a strange situation when someone with a diarrhea-causing liquid flowing through their body is considered to have IBS – you might just as well drink a gallon of laxative in the morning and then diagnose yourself with IBS. Seems to me it would make as much sense!

It’s time I took a good look at the NICE guidelines for the diagnosis and treatment of IBS in the UK. NICE is the National Institute for Clinical Excellence, and its job is to basically provide guidance to NHS doctors and nurses on various medical issues.

Now, this may well sound bone-crunchingly dull, but these guidelines are the gold standard for IBS treatment and so  we need to take them seriously. If NICE says that IBS is caused by unhappy childhoods and over-bearing mothers then we’re all in a lot of trouble.

The latest version of the IBS guidelines was published in February 2008. I should really have had a look at the guidelines when they came out, but I do try to watch at least eight hours of television a day for personal reasons, which eats into my time rather, plus I’m always wary about reading this kind of stuff because it might get me in a strop. Who knows what unadulterated drivel I might find in there – IBS all a figment of our imaginations? A mild disorder easily treated with peppermint? Who can say.

But let’s dive in anyway and see what we get. There are three different versions of the guidelines: one incredibly long version, one slightly long version, and a brief idiot’s guide, and I’m gonna concentrate on the two shorter versions because of my aforementioned telly-watching commitments. It should be noted that these guidelines are for GPs in primary care, rather than gastroenterologists, who presumably should know what the hell they’re doing anyway.

The guidelines start by describing what diagnostic tests should be used if IBS is suspected. The emphasis is on making a positive diagnosis, rather than the traditional diagnosis of exclusion. So, patients should NOT have a colonoscopy, sigmoidoscopy, ultrasound, or thyroid function test, for example.

In fact, the only tests recommended are a full blood count (checking for anaemia and lots of other stuff), an erythrocyte sedimentation rate (ESR) test (for inflammation and autoimmune diseases), a c-reactive protein test (mainly looking for inflammatory bowel diseases) and an antibody test for coeliac disease.

This seems to be in line with current IBS thinking worldwide, which has moved away from the exclusion diagnosis idea, and I think it’s probably true to say that fewer patients are having colonoscopies as a matter of routine just because they present with IBS-type symptoms. On the other hand, there are plenty of IBSers who have never been near a test for coeliac disease.

I’m quite surprised to see that a ‘hydrogen breath test for lactose intolerance or bacterial overgrowth’ is listed among the tests that should not be performed. I guess this shows that Dr Mark Pimentel’s theories of small bacterial overgrowth are famous enough to be mentioned, but not established enough to be recommended.

The guide includes general diagnostic criteria, and these are based on the standard Rome Criteria – abdominal pain/discomfort, change of bowel habit, pain relieved by defecation etc. The only unusual thing here was the list of possible supporting symptoms: lethargy, nausea, backache and bladder symptoms. You don’t usually see bladder symptoms listed as a possible factor in IBS, but I guess there are lots of IBSers with bladder problems too.

So, now we’re all nice and diagnosed, the guide moves on to treatment advice, starting with some lifestyle and diet tips. These are quite basic but generally useful. Some slightly airy-fairy stuff about encouraging patients to ‘make the most of their leisure time’ is backed up by more solid suggestions like referring patients to a dietician for advice on exclusion diets and advising patients to avoid aloe vera as a treatment (some aloe products can be strong laxatives, although aloe supplement manufacturers often say their products have had these bits removed).

Most exciting of all though – you might want to sit down for this – is the fact that the guide advises patients to avoid insoluble fibre such as bran. Can you believe it? It actually tells us to eat LESS bran, when for thousands of years the standard (and often only) advice for IBS sufferers was that they should stuff their face with All-bran, often with fantastically painful results. Hurray! Hurrah! Plus it also advises that soluble fibre is much better for us than the insoluble kind, which I’m sure you all knew anyway.

The guide does seem to take this a little far at one point, recommending that we reduce our intake of both bran cereals and any other high fibre food like brown rice (do sufferers really have problems with brown rice?!) but the basic message is soluble fibre good, insoluble fibre bad, bran awful, which is just what I like to see.

I’m also very pleased to see the mention of sorbitol, an artificial sweetener that, along with some other sweeteners, can produce dramatic laxative effects. Other tips such as drinking lots of water and cutting down on caffeine and alcohol are difficult to argue with, although limiting fresh fruit to three portions a day is a bit of an unusual one, but I guess that’s because fruit in large quantities can cause diarrhoea as easily as sweeteners, so fair enough.

On the drug front, NICE recommends anti-spasmodics, laxatives (but not Lactulose, that syrupy-sweet liquid stuff) and Imodium to start with, progressing to tricyclic anti-depressants such as amitriptyline for their painkilling effects, or SSRIs if the tricylics don’t work. Again, nothing to argue with there. (Where’s all the fun stuff telling me that I need a damn good talking to and a trip to the psychiatrist? Honestly.)

Acupuncture and reflexology are specifically mentioned as treatments that should not be used, and I don’t know why these two in particular have been singled out. I mean, maybe lots of patients ask for acupuncture, but reflexology is an advanced form of foot massage – who on earth thinks that it could treat IBS apart from reflexologists? Anyway, don’t try it, apparently.

Also included is the suggestion that if a patient has not responded to treatment after 12 months then they should be referred for CBT, hypnotherapy or ‘psychological therapy’. I would agree with the hypno, as there are studies to show it can be good for IBS, and I believe that CBT can be helpful if you have diarrhoea that is set off by situations such as being stuck in traffic, as it can help train the brain to chill out and behave itself.

I’m not sure what is meant by psychological therapy, which is probably good as I don’t expect I’d approve. (In fact I’ve just checked the longer version of the guidelines and it seems like ‘psychological therapy’ means a trip to the good old psychiatrist’s office after all. I knew they’d try and sneak that in somewhere.)

But still, it’s tough to get too animated about a guide that says try plenty of physical treatments for a year and then look into some of the psychological stuff if you need to.

So – that was amazingly painless! I have to say that if the Great British IBS public are getting this kind of treatment from their doctors then that would constitute an impressive leap forward from the attitudes of old.

In my own history of GP visits I have been prescribed Lactulose, undergone sigmoidoscopy, thyroid function and ultrasound tests, been given absolutely no dietary advice whatsoever and never even had it mentioned to me that anti-depressants can be used for IBS.

Now, my last GP visit was almost 10 years ago now, so hopefully things have changed since then, and GP care has now metamorphosed into the kind of caring, sensible, evidence-based approach found in these guidelines. Let’s hope so!

(The NICE guidelines are available as PDFs here.)

I’ve been contacted by a chap who works for Prometheus Labs, the company who now hold the rights to Lotronex. They would like to hear your feedback about a number of Lotronex issues.

This is a great opportunity to air your views to someone who is at the heart of the Lotronex story, and that doesn’t happen often, so please do take this chance. I’ve set out the issues that the Prometheus rep raised below, and given a few responses of my own, but the people we really need to hear from are those of you who are using Lotronex, have used it in the past, or have asked your doctor for it and been refused.

Please leave your message in the comments section, either to comment on any of the issues raised below or to make your own points. You can also share your personal experiences of the drug. Just fill in the comment form at the end of this blog entry.

Just to say before we start – I’m not offering any recommendations or endorsements here, either to the makers of Lotronex or the actions of the FDA. These are very important issues and they need an objective evaluation.

I am however firmly on the side of the IBS sufferer, so tell me what you want!

1. “There are many women on multiple medications but they are still experiencing symptoms and their quality of life and daily activities are still impaired. And yet their physicians will not discuss Lotronex with these women and at least offer the option.”

This presumably is because doctors do not believe that IBS is a serious problem (I’ll come back to this point), because of the history of Lotronex itself, or because the patients do not fit the tight criteria that the FDA have specified for drug’s prescription. For anyone who doesn’t know what happened with Lotronex, here is the backstory.

Lotronex was withdrawn by the US Food and Drug Administration (FDA) in November 2000. This was because the FDA had identified 70 cases of adverse reactions to the drug, including five deaths, relating to intestinal damage caused by either ischemic colitis (restricted blood flow to the intestines) or severe constipation.

In 2002 the drug was reintroduced under a restricted drug distribution program which allowed access to the drug for patients who were classified as having severe diarrhoea-predominant IBS, which the FDA estimates as applying to less than 5% of patients.

Doctors need to enrol in this special program before they are allowed to prescribe the drug, and patients must also sign an agreement to show they understand the potential risks and benefits. A lower dosage of Lotronex has also been introduced to reduce the risk of constipation.

2. “Patients with IBS are often told it’s in their heads or that it’s not very serious. How can women with IBS-D become empowered to challenge their doctors and demand therapy?”

This is more about the general ignorance surrounding IBS rather than the potential risks and benefits of any drug. Ah, that all in your head quote just won’t die will it? Maybe these doctors should be keeping up to date with their reading:

“IBS is not caused by stress. It is not a psychological or psychiatric disorder. It is not ‘all in the mind’. Because of the connection between the brain and the gut, symptoms in some individuals can be exacerbated or triggered by stress” says the International Foundation for Functional Gastrointestinal Disorders IFFGD

“It is important to note that IBS is not a psychological disorder” says the Canadian Society of Intestinal Research

“Functional gastrointestinal disorders are not psychiatric disorders” says the UNC Center for Functional GI and Motility Disorders

As to the question of whether IBS is serious or not, well, it’s certainly not fatal or progressive, even if untreated, and that is enough by itself to send some doctors to sleep. But there are plenty of medical conditions that won’t kill us that can still ruin our lives.

One of the best ways to measure the impact of a particular medical condition is through a quality of life study. These studies ask patients about everything from their social lives to their emotional wellbeing to find out exactly how difficult it is to live with the disorder in question.

A quality of life study in the medical journal Gastroenterology showed that IBS patients have a significantly lower health-related quality of life than patients suffering from other chronic disorders. In many areas IBS sufferers had a lower quality of life than patients with diabetes, and you can bet that your local doctor treats his diabetes sufferers with respect.

3. “How do doctors and patients define ‘well’. I know Lomotil and Imodium can provide some relief, but is going from 10 bowel movements a day to five ‘well’?”

The quality of life studies are relevant here, but in many ways this is going to be very subjective. It’s certainly a stretch to consider five bowel movements a day healthy, but if the patient isn’t suffering from any pain or discomfort it may not be a huge problem. Or it could mean that you lose your job because you can’t stay out of the bathroom.

I tend to consider myself well when my IBS isn’t limiting my life to a degree that makes me consistently unhappy. I think it’s reasonable for IBS sufferers to have to live with a certain amount of discomfort and pain on an irregular basis, but I also think it’s reasonable to say that any patient who finds that their symptoms start to take over their lives should be offered help. That sounds pretty vague, and I’m not sure how else to answer this question.

So – what do you think? Has Lotronex changed your life? Do you think the FDA acted correctly? Do you worry about the potential risks of Lotronex or has it transformed your life? Speak up on Lotronex!

While the credit of the world goes all crunchy and we all face difficult financial times, we also, of course, have to continue coping with our bowels. IBS can be incredibly hard on our finances, for a number of different reasons – some of us can’t work in the first place, or can’t hold down the better paid jobs because of the pain and the fact that we need to be near a toilet. Some of us have to spend lots of money on drugs and supplements. Some of us take Lotronex, which is reaching increasingly ridiculous price levels.

And so I was pondering this situation this week, and wondering if there might be something that the IBS Tales website could do to help. I remember I had a donations button on the site a few years back, which was really for donations to me to pay towards the web hosting costs etc, but I could set up a donations button again that goes straight to a deserving IBS sufferer’s Paypal account. Perhaps we could nominate a different IBS sufferer each month or couple of months, someone who was really struggling right now, and take away a little bit of their burden together.

What do you guys think? Would you be interested in helping out? Do you think anyone would donate, or need the help? It would be very easy to set up, but it would rely on IBS sufferers who are prepared to help each other out. I do think that people generally look for causes to donate to that they really care about, and if you’re reading this you’re probably someone who really cares about IBS (unfortunately). So maybe it would work?

I’d be interested to hear anybody’s thoughts and ideas!

I should have known that writing an entry about how well I was feeling was just asking for trouble, and trouble is what I got. This past Sunday I had what I can only describe as a super double triple mega crap attack, a gut-wrenching monstrosity of such epic proportions that it may well have been the worst IBS attack I have had in the whole of my life. Here’s what happened.

Got up on Sunday, everything seemed fine. Had breakfast, sat around a bit, checked my emails, a regular day. Went to have a shower. Had been in the shower for a few minutes when I started to get a stomach ache and feel really ill. Had to sit down in the shower, but that didn’t help. Got out of the shower and sat on the bathroom floor for a while.

By this time I was feeling really, really grim. Stomach was killing me, and I was feeling the kind of ill that I have only ever experienced with IBS, a sort of sweaty, shaking, good Lord this does NOT feel good kind of illness.

After perhaps 15 minutes of this I needed the bathroom. Then I went and sat on the bedroom floor, wrapped in my towel still because I felt too ill to get dressed, and just kind of stared at the walls trying to wait things out.

But the pain wasn’t going away, and I still felt grim. After a while needed the bathroom again, went, and then came into the living room, all towelled up still, and sat on the sofa, again to try to wait things out. And this time, thankfully, I did slowly start to feel better, although during all of this time I still felt too ill to get dressed or to even distract myself with the telly or anything else.

The entire attack from start to finish lasted for about two hours, which is perhaps the longest I have ever experienced. Like usual I was extremely grateful just for it to be over, and since then I have been fine.

In some ways this attack was not that mysterious, as it came on the first day of my period, which is a standard trigger for some of the most violent attacks I have had. But I certainly don’t get attacks like this with every period, so just what the hell was going on? IBS really is nuts.

Thought it was about time I provided an update on my own IBS – although I certainly don’t have as many bowel-related mishaps as I used to I’m still not a perfectly-intestined person, and I don’t think I ever will be.

Just as a reminder, or a heads-up to any new readers of this blog, a quick summary of my own IBS situation would be – food poisoning at 12, IBS sufferer ever since (that was 18 years ago now), mainly constipation but also spectacular diarrhea attacks at intervals, lots of pain and discomfort, now largely under control with Normacal, Celevac, magnesium citrate tablets and a gluten-free diet.

To put things in perspective, since the start of 2008 I would say I have probably had perhaps 10 days where something was clearly, tangibly wrong with my bowels. Compared to, say, the same period of time in 2001, that’s an incredible improvement. In 2001, the number would probably have been closer to 150 days, if not more.

I haven’t had a single spectacular diarrhea episode this year, which is fantastic, because they are just absolutely grim from start to finish – so painful, so intense, and just nasty.

What I do have are kind of odd bowel episodes where something is obviously wrong, but not to extremes. So I do have days of the big C, but I am usually back to normal within 24 hours. I do have days where it feels like my guts are over-inflated, and a couple of weeks back I had some impressively loud bowel sounds that were obviously a complaint from the gut department about something or other.

I also have days where, how can I put this politely – oh sod it, this is a bowel blog – my poops are fairly obviously the poops of someone with a bowel problem. Sometimes I care about this, but only really if it goes along with pain or discomfort (as it often does). Mostly I try to remind myself that even normal people have poopal variations.

And there we are. When people tell us to learn to live with our IBS, I imagine that this is what they think we are living with – bits of pain here and there, the odd day of discomfort. And it is pretty easy to live with, although there is always an IBS gremlin at the back of mind telling me that things could get worse at any moment.

But for now, I am, thankfully, amazingly, pretty darn well. Thank the good Gut Lord for that.

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 extent 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…)