From a practical viewpoint, there are two types of illness; those that have a clear pathology and cause, a definite diagnosis and can be treated with drugs, diet and surgery and the medically unexplained illnesses, that have no pathology, no diagnostic test and no established treatment.
Doctors, trained in the science of medicine, are increasingly able to diagnose and treat if not cure the cancers, infections, chronic inflammations and degenerative disorders, that used to kill millions but this leaves a whole raft of vague, less well defined illnesses that has no specific treatment or cure.
IBS is an example of the latter. Although it has been defined by a collection of symptoms referable to the bowel; abdominal pain, bloating, diarrhoea and constipation, it also includes a diversity of other emotional and physical symptoms. As such it is very much an expression of the individual, influenced by their inheritance, what has happened to them and how they lead their lives. IBS is an ailment that has to be seen in the context of a person’s life. The consequence is that management must be customised to the individual.
With just a few minutes to assess their patient, doctors cannot hope to appreciate all the facets of their personality. They must therefore resort to treatments based on evidence gathered from populations of patients that may exhibit similar bowel symptoms but whose illness is conditioned by a variety of constitutional and experiential qualifiers. Medical treatment is based, not on individual understanding but on fitting the symptoms to an approved template. No wonder patients feel their doctors don’t understand them.
It may seem a strange thing for a gastroenterologist who has treated people with IBS for over 40 years to say, but I do not think that doctors are the best people to manage this illness. Their role is to identify or rule out conditions with similar symptoms that have a specific treatment. The medical system is very efficient in detecting conditions that are not IBS, but very poor at treating IBS.
Similarly I do not think that referral to a specialist dietitian is always the best answer for IBS. The history of dietary treatment for IBS is littered with sudden enthusiasms and prolonged disappointment. IBS patients have lived though high fibre diets, gluten free diets, dairy free diets, and more recently probiotic supplementation and low FODMAP diets. All of these can work for some people some of the time, but I think they are too prescriptive and too specific to suit everyone.
In contrast, holistic, complementary and psychological therapies can work just because they are not specific. Instead, they allocate time to understand the individual and customise the therapy to fit their particular circumstances. These have grown in popularity despite the attempts of guidelines, diagnostic criteria and treatment algorithms to exert medico-political control on IBS, but coexist comfortably alongside scientific discoveries on the microbiome, gut immunology, the gut brain axis and the role of life trauma, which support a holistic concept. They do not so much address the pathology of the illness as the meaning and the belief. If any treatment coincides with the patients intuitions or feelings about their illness, then they are more likely to believe in it – and it is more likely to be effective. This has often been derided as the placebo effect, but I think it is more helpful to call it the ‘healing effect’. Confidence and belief have always played a major role in the healing art of medicine.
So who is the best person to manage the range of factors that influence the expression of an otherwise unexplained illness like IBS? I believe it is you, the patient. Only you know the way you live your life, your fears and frustrations and what has happened to you, but your body knows how you feel about it. Doctors do not have the time to ‘know’ their patients and cannot hope to manage every twist and turn of IBS. Nevertheless, you may still need somebody to listen in order to bring your feelings back to mind and information as to what treatments are appropriate, safe and can provide the space and confidence to gain insight. If you can understand and manage you own illness, it ceases to be a threat and becomes something you can control.
There is an abundance of information about IBS on the Internet, not all of it reliable and much of it biased towards a particular product. The IBS Network’s Self Care Programme provides what is generally regarded as the most comprehensive and reliable source of information and advice. It contains advice on the nature and diagnosis of IBS, the role of diets, stress management, medical treatment and therapies, details about specific bowel symptoms and your own downloadable symptom tracker. The basic information you need is free to everybody, but much more information and links are available to members of The IBS Network for £24 a year (£2 per calendar month). Unbiased information can also be obtained from patient.co.uk and NHS Choices. Equipped with reliable information, you can more readily appreciate the factors that have the most influence on your IBS and how you might best control these.
Self help is not just about giving you the right information and letting you get on with it. To be optimally effective, it requires appropriate guidance. Guided self management must therefore be the cornerstone of IBS treatment. Health care professionals need to be more aware of the holistic nature of IBS, and how to guide and facilitate people into finding the right management for them. This requires a different kind of training than that, which they obtain in medical or nursing school.
Over the next few months, The IBS Network intends to roll out a series of training courses to equip health care professionals and ‘expert patients’ to facilitate self management in therapeutic groups. Its long term aim is to set up a national network of Self Help Groups run by trained leaders. Self help groups can facilitate the work of health care professionals by creating informed patients, confident in managing their own condition but knowing when they need more advice and guidance.
If you are a health care professional with an interest in supporting people with IBS or you are someone with IBS who wants to help others manage their condition, please express your interest in signing for a free one day training course by contacting The IBS Network on firstname.lastname@example.org, and providing your email address, telephone number and location.