The practice of medicine still operates on a model that was developed early in the last century. First establish the diagnosis, then identify the cause and finally apply the treatment. Back then, infectious diseases were the threat. Children were dying of smallpox, meningitis and diphtheria, tuberculosis meant inevitable wasting and death, syphilis led to madness and paralysis, and the old and frail succumbed to pneumonia. There were few tests. Doctors relied on taking a detailed history and conducting a careful physical examination to reach a diagnosis. There was often no cure; only prayer and palliation.
Then Alexander Fleming discovered penicillin, Howard Florey extracted enough to conduct clinical trials and everything changed. In the next twenty years, other antibiotics had been synthesized or extracted and treatments developed for a host of other diseases: ulcers, inflammatory diseases, blood pressure, thrombosis, asthma and even cancer. We experienced a pharmaceutical revolution; a pill for every ill. And with it came ever more sophisticated diagnostic tests and miraculous developments in surgical interventions. It was an exciting time. My friends and I were training to be doctors. We learnt the skills and accumulated enough experience to make a real difference. Soon, pundits claimed, disease would be eradicated.
But as more diseases were identified and treated, it revealed a whole raft of illnesses that had no specific cause, no diagnostic test and no cure or single effective treatment. Undeterred, and spurred on by pharmaceutical companies eager to develop new treatments, doctors followed the tried and tested method for identifying specific diseases. First, define the condition as carefully and clearly as you can, then conduct research that would reveal a specific cause, then apply the treatment to suppress or eradicate it. So in 1990, the Rome Committee of medical experts established diagnostic criteria for the collection of unexplained bowel symptoms they called IBS. 25 years on and despite many modifications, we are still no nearer to finding a cause for IBS, establishing a diagnostic test or discovering a cure or even a specific treatment.
More out of hope than any scientific insight, the fifth incarnation of The Rome Criteria, Rome V, is due out next year. Within the pages of those weighty tomes, subcategories will be developed and the argument expressed that IBS was never a specific diagnosis, it was always a syndrome, a collection of unexplained bowel symptoms, non specific reactions to anything that irritates or affects the bowel and caused no doubt by a range of specific conditions each with its own diagnosis and treatment. We already knew that food poisoning or gastroenteritis made the bowel irritable, so did long term bowel diseases like Crohn’s disease, ulcerative colitis, coeliac disease and rarely cancer of the colon, so these needed to be excluded to be sure of the diagnosis. So despite the protestations of the Rome aficionados, IBS is not a disease doctors can diagnose positively; the diagnosis is made by excluding other known bowel diseases. The discovery of the diverse capabilities and potentials of the colonic microbiome and their effects on gut permeability and the immune system will undoubtedly perpetuate the Roman model as it might suggest the existence of specific identifiable subsets. Nevertheless it’s mission creep; more of the same, much more complicated and little chance of any definitive disease. Rome VI, if it ever exists will need a whole library.
Surely it’s time to look at a different model. If IBS is not an entity or ‘thing’ or even a collection of ‘things’, then perhaps it is ‘no thing’. I don’t mean to say the illness doesn’t exist. You know it does. Many of you have suffered it every day of your lives for years on end. The ‘thing’ is the name, a fabrication designed by committee more to assist doctors than their patients. So maybe we should be asking you.
Over the last 25 years since The IBS Network was inaugurated, I have received thousands of emails and letters from so many of you. I have also seen scores of people with ‘IBS’ in my ‘gastrotherapy’ practice. The overwhelming impression you convey to me is that your symptoms are so much an expression of who you are, they started at a time that had particular meaning and significance for you, they vary according to what you do and how you feel, they undermine you and make your life a misery and they don’t seem to respond in the long term to diet and medications. Indeed the misery IBS causes you is far greater than that expressed by patients with Crohn’s Disease or Cancer; so much so that many of you have told me that you wished you had those devastating diseases. That way, you would know and be cared for and there would be an end to it. I am not saying that people with IBS are a particularly unhappy group, but it is important to note and state that this illness is not all in the gut; the panic, the misery, the rage and depression are so much part of it.
I have been challenged many times by the assertion: ‘nobody knows what IBS is!’ My response has been. Of course you’re correct. IBS is the name given to set of unexplained symptoms. It is a disease awaiting a cause and a cure. If we knew what it was, it would no longer exist as such. But that does not mean we cannot begin to understand and develop models that fit better what we do know.
Diseases result from the interaction of the individual and their environment. Among the environmental factors are infections, toxins, components of food, potential allergens, radiation, injury and life events. All, however, require an individual susceptibility, which might be genetic, developmental, previous experience, social, the composition of the microbiome and the integrity of the immune system.
IBS is complicated in as much as it is a three or four component progression. There are environmental factors that instigate the a state of dysphoria involving the mind and the body, factors that anchor that to the gut, changes in physiology and factors that trigger the symptoms. Let me give you an example.
When Sam’s fiancée announced over dinner that he was leaving her for another women, she was so shocked she rushed to the toilet, was violently sick and had diarrhoea. In the next two weeks, she had left not only her boy friend but her job, her town. She could not tell anybody what had happened until she came to my clinic with severe food intolerance and IBS. We talked and in time she recovered. In terms of the model, the instigating factor was the traumatic news, the meal and her reaction to it anchored it the gut, the memory of what happened and her inability to wear it away by talking about it – perhaps the conclusion she was better off out of it – made her gut very sensitive, and of course food and the memory triggered her symptoms, but recovery meant coming to terms with what happened.
Sam’s is one dramatic example. Not everybody with IBS has a similar story. The idea that the gut may also be sensitised bottom-up by an attack of gastroenteritis or by broad spectrum antibiotics also makes sense, but we and other clinical investigators have shown that the symptoms of gastroenteritis are much more likely to persist as post infectious IBS if the patient is anxious, depressed or experiencing some ongoing life situation at the time of the original infection.
Once the gut has been sensitised, the rest may follow as fellow travellers: the changes in gut transit, bile acid malabsorption, diarrhoea, depletion of the microbiome, alterations in permeability, mild inflammation. The whole sequence can so easily set up a vicious spiral that also acts via the gut brain axis to affect mood, stabilising the steady state that keeps the patient in IBS.
Illness, no matter what it is, always makes us anxious and obsessional. When I have toothache, I can think of nothing but my sore tooth, but it must be much worse for a long term illness that nobody knows how to treat. We may not be hypochondriacs to begin with but chronic illness can so easily make us that way. One only hopes that the whole cycle of illness is not further complicated by ill advised treatments.
The holistic model does provide a rationale for interim treatment with a low FODMAP diet to suppress symptoms, but the best opportunity to effect a cure may lie in reducing visceral sensitivity by psychological or complementary therapies and/or replenishing and stabilising the colonic miocrobiome.
But nobody can make your IBS better for you though they may be able to guide you and help you do it yourself. The key to managing IBS is facilitated self help. The IBS Network has a team of highly dedicated professional and patient IBS experts, who inform, advise and support people with IBS and can work alongside your own health professionals to facilitate understanding and self care of IBS. We provide a comprehensive self care plan and can offer personal advice through the website (www.theibsnetwork.org) as well as many other benefits. Our mission is to help you better. So do go to our website and join us by becoming a member. Together we can make a difference.