He shuffled in, sat down heavily and fixed me with a watery stare. ‘You know them pills you gave me last time, doc?’ He sucked in his breath noisily and shook his head. ‘No good! They made me worse. I wasn’t able to go for a week. So I stopped taking them.’
Now this was the fourth prescription I had given Ted in as many weeks and it was becoming clear to me that nothing was likely to work. In fact, it almost seemed that he didn’t want it to work. We were engaged in a therapeutic dance where the only gain was that our caring relationship might go on forever.
Of course, what often tends to happen is that after the doctor has run out of options, patients with IBS is sent off for more tests or referred to gastroenterologists or dietitians. The whole paso doble starts all over again and almost inevitably ends in failure and rejection.
Our health care system is not good at dealing with long term unexplained illnesses like IBS. It operates on a model of first establishing a diagnosis by tests and then applying the right treatment, after which the patient is supposed to get better. This may work for those illnesses that have a definite pathology but it doesn’t function for IBS. The tests just tell you what it’s not and specific treatments rarely last and are never a cure.
Forgive me if I sound cynical. I actually believe in the system as far as it goes. Since the ‘typical’ symptoms of IBS can be produced by any disease that irritates the bowel, it is important that the commoner or more serious conditions, such as Coeliac Disease, Crohn’s Disease, Ulcerative Colitis or bowel cancer are ruled out and of course antispasmodics, bowel regulators or diet are worth prescribing to reduce the worst of the symptoms. But that is probably as far as our health care system can go for people with IBS. Anything more is likely to end up in a merry go round of referrals and the consolidation of an illness identity, which can so easily become a focus of rejection and resentment. It is so often the emotional consequences of a health care system that rejects the illnesses it can’t diagnose and treat; the feelings of inadequacy and grievance, that can perpetuate the physical symptoms and keep people in the illness.
But let’s look at little deeper. When health carers have the time to listen, it seems clear that so much IBS is instigated by something that happens: an operation, a bereavement, a life threatening illness, a rejection, a disappointment, the loss of a friend or a job, relocation, separation and divorce, children leaving home. Research on the sequelae of trauma reveal that after a time the depression and grief may wear away but what remains is the shadow, the bodily representation of loss, the unbearable anguish of abdominal pain, the emotional incontinence of diarrhoea, the resistance of constipation, the intolerance of food and society. Whatever happened has been suppressed from conscious memory and the illness becomes the focus of ongoing grievance. Patients with gastroenteritis are more likely to develop long standing IBS-D if they were particularly anxious or depressed or had something going on in the lives at the time of the acute illness, ‘as if the diarrhoea was recruited to express what was happening’.
I am not deliberately ignoring the changes in the colonic microbiome and the gut immune system that have been described in patients with IBS. I do, however, wonder if these might be consequences of either the IBS itself, or the events that led up to it, such as the stress of an operation or a gut infection or treatments with powerful antibiotics, all of which which might render the gut constitutionally sensitive to rekindled memories or rejection and loss.
But to return to my theme; if your IBS is the representation of what has happened – and I acknowledge that not everybody’s is – then drugs, diets and supplements can only act like sticking plasters or a cough syrups to soothe the worst of the symptoms. This would leave you feeling disappointed and rekindle and consolidate feelings of loss and rejection that would keep you in the illness. Hence the more you seek another opinion, the worse these feelings can become, and all too soon you may be trapped in your illness.
If IBS is the result of events that have taken place in your life or the difficulties you have in coping with your current situation, then the only person that can really resolve it is you. Your doctor or dietitian cannot sort out your life for you. And the more they persevere, the more kind they are, the worse of a failure you feel. You may both therefore get caught in cycle of denial; not wishing to explore the possible distressing antecedents of your illness, it is easier to seek help from doctors and dietitians trained to see illness as a biological consequence. But the longer you both persist in this myth of biological determinism, the greater the inevitable rejection and the longer the illness lasts.
If this sounds like I am saying, this is just IBS, pull yourself together and get on with life, let me emphasise that I am not. Many people need help to get over the things that happen to them, but they need the right kind of help. Doctors cannot cure such illnesses, but they can make them worse.
Other health care workers, those with time to listen and an understanding of working with the body; some counsellors, trauma therapists, many complementary health practitioners, dance therapists, yoga therapists, those who teach mindful meditation, can make a big difference because they have the time to observe and listen and the knowledge to work with the body. Movement, exercise, dance, pilates, yoga, swimming, creative arts, writing and many other activities can provide the space and time to enable you to get in the zone where you can begin to connect the emotional and cognitive centres of the brain and get things into perspective. Then what happens can be thought about, discussed, altered by making appropriate changes and ultimately relinquished. But you must find the space and a method that makes sense to you. When I listen to people who have got over their IBS, it is clear they have is that they have discovered their way to regain a sense of hope and purpose other than the continuous battle against their illness.