How is it that scientists can eradicate infectious disease, cure cancer and reverse strokes but have not idea on what causes or how to treat my IBS?’
All we know for certain about IBS is that it includes symptoms referable to the bowel and that these symptoms cannot be explained by known diseases. And we only know that because ‘experts’ have decided that is what IBS is. But as with many things in life, what we don’t know often tells us more than what we think we do.
And there is so much we don’t know about IBS. For example, we don’t know what causes it, although it often seems to be instigated by an attack of gastroenteritis or by a traumatic experience and triggered by certain foods or emotions. We don’t know its pathology. There is no diagnostic marker. There is no definitive treatment, although some drugs, diets or therapies work for some symptoms in some of the people some of the time. And we don’t understand why people with IBS suffer with symptoms outside outside the gut. So much we don’t know. But so much to find out!
The evidence based approach to understanding IBS establishes a hypothesis about a particular cause or treatment, which it then tests in a representative cohort of patients. It is time consuming and expensive and assumes that there is one key factor or effective treatment and the population under investigation will behave in a similar manner which will differ from so called healthy or normal individuals. These assumptions are probably false. The more we find out about what we call IBS, the more it seems that IBS is not a well defined disease with specific cause, definitive diagnosis and effective treatment. Instead, it behaves more like a personal resetting of gut responses that may be rectified by various combinations of a range of treatments.
Whenever something in science is not well understood, the chances are that investigators are looking in the wrong direction or thinking about things the wrong way. This would certainly seem to apply to what has been called IBS. Attempts to define and classify have only served to restrict scientists to paths governed by maps and guidelines and carry implicit warnings that deviation from the paths of righteousness will be punished by lack of funds. They net result of all this effort could be that we know more and more about less and less.
So is IBS the gastrointestinal expression of a type of illness that has actually been known for ages under terms such as hysteria, melancholia, hypochondria, the spleen, irritable weakness, neurasthenia, all of which describe a state of dysphoria involving both the mind and the body and including a variety of visceral and somatic symptoms? Is that why the symptoms of IBS overlap so much with other illnesses coined by committee, such as fibromyalgia and chronic fatigue syndrome? If so, it would seem that there is more to be gained by appreciating the commonality among all of these conditions; the relationship to stress and trauma, the changes in the emotional centres of the brain, the disturbances in sensitivity, the mild inflammation and the possible alterations in the microbiome than in analysing each condition separately. At least such an approach might generate potential hypotheses, around which to group the evidence. But would that just seem to apply more scientific method to conditions that have so far defied it?
It could be that qualitative research grounded on narrative or semi-structured interviews might provide important insight into what might be common to all these conditions. If as suggested in a previous post, medically unexplained conditions represent the meaning of what happened in people’s lives as represented through changes in their biology, then this is most likely to be revealed in the stories which they tell. Then analysis according to grounded theory could be used to extract themes and construct testable hypotheses. Another and perhaps more efficacious approach might be to examine the responses to therapies of different modalities to find some meaning behind recovery.
One important insight in recent years has been the investigation of the changes that occur in the mind and the body after trauma. These include many of the symptoms that have been grouped under separate medically unexplained illnesses, including Irritable Bowel Syndrome. Studies of holocaust survivors, conflict veterans, disaster victims and women who have been sexually abused, have not only revealed a long history of emotional disturbance, including mood changes, sleep disturbance, dissociation, but also a variety of chronic physical complaints, often involving the gut. But not all trauma is so overt or disastrous. Most is domestic and includes experience that is common to everyone, including bereavement, loss of a job, divorce, the breakdown of a relationship. These are the events that pain us, wear us down and wrench our guts out of kilter.
So perhaps more could be understood about unexplained bowel symptoms by escaping the confines of the medical diagnosis of IBS, looking instead at the context and meaning and thinking less about diet and medication, which may just keep us in the illness, and more about growth and recovery.
Thank you very much for this post
For me it was marvellous!
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Beautiful and true.
Thank you for your comment, Carly.