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.)

Lu Petersen // May 25, 2009 at 3:22 pm
I have been sitting at the computer 3 hours and think I’ll jump in and tell my IBS story. I am 77 years old and have delt with attacks for 50 years.
The attacks come sometimes with food triggers, stress, and it seems seasonal sometimes. I was told by my first doctor that maybe spring or fall might be triggers of attacks which have occured many times during those seasons but as I have finally said, “Who knows!” I’m thankful that my flair-ups are sudden and out of the blue (usually with about 10 minutes warning) short lived rather than on-going.
This last episode was triggered by a breath mint with a hight sorbitol content and stress (mortgage). I was in what I call Labor for nearly three hours of cold sweat and agony alone at home. There is ne bowel movement because the spasams block off everything. This labor is usually long, without any breaks until I sense it’s time to run to the bathroom.
Brown liquid spurts the walls, floor and stool even though I try to keep a towel to contain the explosion (reverse volcano). There is no muscle control. The amount of liquid roars into the stool…well over a quart (more like 2 quarts). I crawl back to the bed only to have many other eruptions…diarrhea like now, filling the stool. By this time my husband is home and he papers the lower walls, floor and stool with newspaper. This is a typical account of one of my attacks. There are variations, some less severe but all exhausting and debilitating.
I am nearly two weeks from the attack without a sign of a bowel movement. I have drunk tons of water and eaten carefully. After an attack I eat more carefully, avoid stress but before long, I slip into old habits and everything is fine for 6 months or over a year or so.The world has no idea what IBS people go through! I know more about it than my doctor. I just want something to shorten the spasms and severe cramping and something for the pain. Is there something that someone knows about this?
As it is now, I have many tricks and have swallowed my pride long ago. I have gone to the Symphony in Depends. We use breath spray if needed.
Liz // Jul 11, 2009 at 2:09 pm
Just to let you know that I was prescribed amatryptaline in liquid form (lactose intolerance) and while it is amazing at getting rid of the pain (seriously, it’s brilliant at it for me) the side effects of drowsiness was too much for it to be a permanent solution for me. Apparently I had an ‘extreme’ reaction to it (12 hours sleep a day at least).
Jenn // Feb 13, 2010 at 12:03 pm
I keep experiencing side ache pain monthly with my menstrual cycle. Usually lasts between 2-3 weeks after a period. It’s exhausting. They prescribed me amatryptaline for the pain, but it doesn’t seem to be working. I have been diagnosed with irritable bowel. Does anybody else suffer from these symptoms? I can’t shake the feeling that there is something else wrong.
Jenny Makinen // Feb 15, 2010 at 2:29 pm
Yes, stunning news about the fibre. I finally saw a dietician today and wasn’t really expecting to hear anything earth shattering. The first thing she asked was had I tried linseed and I thought, “oh no, here we go again; yes, I have tried it…..”
But then I perked up when I saw what was in her little leaflet. Because I have been doing for decades what I thought was the very best thing for my body – eating as much fibre as I possibly could. And lately I’ve been having more than ever (and my IBS has been worse than ever?) All Bran for breakfast, prunes, figs, and nuts all day as my snacks, brown rice, fibrous veggies etc etc. that isn’t all I eat but I do make it a point to have as much as possible. The post here says the guidelines go too far but my recommendations are to have a very low fibre diet – only white bread, rice, pasta etc. I should cut the skins off fruit and take seeds out of tomatoes; avoid Brussels sprouts and ready made sauces. Nothing about gluten or dairy; her feeling is that intolerances are much more likely to cause diarrhoea than constipation.
I don’t know what to think really. So I’m supposed to now eat refined sugars? What about low glycemic index foods to keep my blood sugar stable? My husband thinks I should just eat his Dr. Atkins type diet – ever since he cut out everything but meat and cheese he’s cured his Ibs-D.
Well I’m only one day into it but I must say my gut feels less angry. I am hoping to write in the happy tales one of these days. What I really liked about my dietician was that she also took time to talk about relaxation and hypnotherapy and combining that with the dietary approach – it makes sense that I will have to look after both sides.
I’m so sorry for those of you who got stopped by the uncaring doctor. That was my fate before but now I have a kind thoughtful doctor and have seen a kind and wise dietician. I believe there is hope and I will not give up.
Thanks for listening,
Jenny