On the 5th March, 2013, The Southern Daily Echo, based in Southampton reported the inquest on a 25-year-old Hampshire woman, who committed suicide after struggling to overcome irritable bowel syndrome (IBS) which had afflicted her for several years.
The inquest at Portsmouth heard that Miss Samantha B had become increasingly desperate after being passed between doctors who had been unable to cure her. The problems started when she was at university and were exacerbated by the stress and anxiety of her studies. Her condition deteriorated when she went travelling to New Zealand; she had frequent stomach upsets and lost weight. For the next three years, she was repeatedly referred between consultants and her GP. Her gut spasms were so painful, that on one occasion, she was admitted to hospital as an emergency. In the end, she was physically and emotionally exhausted with it all
The hearing was told that the cause of death was an overdose of Amitriptyline combined with anorexia. A post mortem examination did not reveal any abnormalities. Recording a verdict that Miss B. had committed suicide after becoming depressed, the coroner stressed the ‘reality’ of her pain and added ’you can understand how it was getting her down’.
Her parents were more explicit, Her father said, ”Sam was a clever girl and she did her best to cure herself; she had tried acupuncture and all the alternative therapies. Her mother added, ”It is quite clear to me that Samantha had become very depressed by it all. It was the system that let her down’
Commenting on the report, one reader wrote ‘IBS is a horrible condition that is rarely regarded as much more than a minor ailment, yet it cannot be easily treated. Sadly, Samantha is not the first to be driven to such a drastic solution by it. It is so tragic that she didn’t receive the support she needed.’
I agree. This tragic story should never have happened. We often hear that IBS is not a life threatening condition, but depression is common in IBS and suicide is always possible. IBS, like any illness, must be taken seriously. Twelve years ago, the team from Professor Peter Whorwell’s gastroenterology service in Manchester reported that 35% of people attending their tertiary care clinic for IBS (the most ‘serious cases’) had contemplated suicide and 5 had actually attempted to end their life. Figures for inflammatory bowel disease from the same clinic were about 15%.
For the last year, The IBS Network has been running a campaign via Change.org., entitled ‘It’s not just IBS’ The purpose of this campaign has been to raise awareness of the seriousness of IBS, improve education for care providers and enhance services for IBS.
For overstretched health services, it can seem that IBS is a diagnosis that is made only when ‘life threatening’ conditions like Crohn’s Disease, Cancer and Colitis are excluded. Individual doctors are not altogether to blame for not taking IBS seriously; they are merely trying to carry out ‘best practice’ as set out by NICE and other guidelines.
NICE guidelines for IBS were compiled to help the doctor know which conditions to exclude and which treatments to apply. They are supported by evidence based on population studies which assume that patients with the same diagnosis are likely to react in the same way. As such, they are more about medical efficiency and less about patient care. They do not look at the context of the illness, the situation and belief structure of the individual patient or the holistic nature of treatments for IBS. As this poor young woman’s mother commented, ‘It was the system that let her down.’
In my role as a psychotherapist (perhaps more holistically a ‘gastrotherapist’) for IBS, I see many people made desperate by their illness and the lack of effective treatment. Each has their own individual story, a cultural and social narrative that explains the context of their illness instead of the scientific précis that conforms to diagnostic algorithms set by the medical system. The very act of telling the story, explaining what their illness feels like, how it came about and what triggers it, not only alleviates the symptoms for a time, but can also flesh out the context of the illness and reveal the changes that could be made for them to live well with their sensitive and irritable gut.
I am not describing some abstruse or obscure psychoanalysis. There may not have been any dark secret or devastating trauma; an attack of gastroenteritis or a course of powerful antibiotics may have rendered the gut sensitive and the patient worried and upset. What I am emphasising is the importance of creating the time and space to be able to listen, think and help a person find a way through their IBS that seems right for them.
In our recent 25th anniversary conference, ‘IBS the patient’s perspective’, our guest presenters, the patients, all talked about how they learnt to understand their condition, take control and live well with it, even though the memory of it, filed away in their body and mind, may still be triggered by situations, events or foods that rekindle what happened.
Self Management is the key, but that does not necessarily mean going away and finding out for yourself. It is more about doing some research and then having an informed dialogue with a health care professional who understands and has the time to listen and advise. It requires a change in attitude. The patient needs to understand that their doctor cannot know everything about their ‘individual’ illness, while the doctor needs to acknowledge that their patient is the expert when it comes to the nature of the sickness. Only they know what their illness feels like, when it occurs, what started it in the first place, what seems to bring it on or take it away and what it means and represents for them. The doctor can help put that into a medical context that may help their patient find the right solution. They are, however, not miracle workers though they can listen and work with their patients ideas and beliefs to help them find the answer that is right for them. Active listening in order to understand and appropriate therapeutic suggestions that motivate may be all that is needed.
This way of practice is very different to the ‘definitive diagnosis’ and ‘pill for every ill’ approach that is implicit in treating detectable pathology. It gives the control to the patient and works with them to develop creative and safe solutions. People are more likely to get better if they feel in control. And for the health worker, the collaboration with their patient can be deeply satisfying. It restores the art of medicine that has been all but frazzled in the white heat of medical science. But let’s not get too ahead of ourselves. We have to start somewhere. If I had one concrete suggestion for GPs, it would be to close down their computer and make eye contact with the person sitting at the side of their desk. Then their patient will at least feel they have been heard.
Samantha’s tragic death should never have happened within a caring health service. All it would have taken is connection and understanding. She must have felt totally abandoned by society to take her own life. We owe it to her to learn from it. .
Not everybody is as desperate with their IBS as Samantha was. For some, it just takes the right information, support and advice to know their IBS and find the solution. The IBS Network exists as an ancillary health service for IBS; it works alongside and together with health care professionals both within the NHS and working privately to guide and facilitate self care. Its on-line IBS Self Care Programme offers reliable information on all aspects of IBS: nature, causes, diagnosis, diet, stress management, therapies and treatments. For members, it offers one to one consultation from IBS trained health care professionals via the telephone or email and it provides a dedicated symptom tracker, which offers the facility to document flare ups (episodes) of IBS and what changes they are associated with (diet, life events, sleep, exercise, work etc). Do check out its brand new website.