Stephen is stuck. He is just 20 years old, but his life is controlled by his bowels. He has seen the experts, been scoped, scanned, his body fluids have been tested, he has been treated with antispasmodics, antimotility drugs for diarrhoea, probiotics, he has been on the low FODMAP diet. Nothing! He had been told he had IBS.
International experts write about the ‘typical features of IBS’ and the importance of ‘a positive diagnosis’. In my experience, there is nothing typical about IBS, and no definitive symptoms or tests. IBS is diagnosed ‘on the balance of probabilities’ by excluding other conditions. There is always ‘reasonable doubt’.
Stephen has a particular bowel problem. He suffers from ‘frustrated defaecation’ or ‘incomplete’ evacuation of his bowels. It preoccupies him every day of his life, so much so that he cannot get on with anything resembling normal life unless he has got rid of all that ‘toxic shit’ inside him. If he senses there is something left, he has to go back and sit there until his rectum is completely empty. This can take hours; especially if he has loose bowels. It is sometimes past midday before he feels clear enough to face the world. He is trapped by his bowels. His bathroom is his prison cell. He can’t go out, get a job, meet friends, date a girl, go to the gym, even take the dog for a walk. At 20, when others are on the cusp of an independent life, he is confined to latrine duty.
There is also an emotional component. Having loose motions makes him feel depressed and frustrated, yet if he is constipated, he feels uneasy and anxious and often has to wait until he gets the urge to go.
‘Constipation is the thief of time. Diarrhoea waits for no man.’
His bowels and his anxiety are both upset by obligation or commitment, but they quickly become the reason not to do it.
Stephen was only 12 years old when his problems started. He had what may have been an attack of food poisoning, but the symptoms did not go away. Instead, they settled into a persistent pattern of abdominal cramping, diarrhoea and urgency. This was a problem at school. Some teachers wouldn’t let him go to the toilet, leaving him flatulent and terrified by the risk of incontinence. Nevertheless, he was popular with his schoolmates and coped despite his limitations.
I wondered whether the changes of puberty, taking place in his mind and body also contributed to his shame and self consciousness? I asked about his sexuality. Had he ever been importuned and abused? Had he had any sexual experience? Was he gay and couldn’t acknowledge it? He denied all my questions in a relaxed manner, but spoke more loudly and rapidly. He said that although he would find it easier to have a close relationship with a man, he was not that way inclined and reiterated that his illness was the source of his shame and social exclusion.
The history of Stephen’s illness probably goes further back than the ‘episode of food poisoning’, but what happens in the first few years of life cannot be recalled in our narrative semantic memory, but ‘the body remembers’ and ‘keeps the score’. Early traumas can have a profound effect on our psychology and physiology and condition the impact of later events. So did Stephen’s head injury and stay in hospital at the age of one affect him? Was he destabilised by his parents’ separation when he was three? Did this instigate the premature surge in testosterone that boosted his height and caused an outbreak of acne. Stephen always felt somewhat alien and isolated from other children.
Stephen’s parents live apart, but they work together as parents. Stephen spends his time living with one or the other. Their attitudes are very different; his mother is somewhat overprotective while his father, while caring and responsible, struggles to be patient and understanding. Stephen is caught in the middle. He had not yet acquired the bowel confidence to make his own way in the world.
Was it the pressure of exams or worries about leaving home that made the problem so much worse a year ago? Stephen tried to carry on, hiding his illness like a dirty secret. Only his family and one close friend knew about it. Not all were sympathetic. His father, in particular, was frustrated. Losing so much time through illness, Stephen failed to achieve the grades he needed to get to ‘uni’. He has retaken his exams this year, but even if he succeeds, is not confident about being able to cope away from home.
Not for the first time, did I feel that I was the last resort of the desperate. I emphasised to Stephen that I felt sure he would get out of his vicious cycle of anxiety and bowel preoccupation, but I did not know when. I could not make him better. Nevertheless, I offered to see him for 10 appointments with the aim of gaining a shared understanding that might help him manage the feelings of shame, desperation and powerlessness that seemed to be driving his behaviour and acquire the confidence to move on. It seemed unrealistic for such an entrenched pattern of behaviour to resolve in a few weeks. All I could realistically hope for was a perspective that may help Stephen change his attitude and behaviour.
Despite his colonic limitations, Stephen has managed to attend most of our appointments, though they are scheduled in the afternoon after his morning rituals.
Stephen is an intelligent young man with insight into his condition. He understands that his bowel preoccupation exacerbates his symptoms by making him self-conscious, which then erodes his self confidence. He fears meeting people because they might think him weird. He knows that distraction, such as going to the gym or an occasional game of football, lets him forget about his bowels, but he feels safer at home by himself and rarely goes out. Did he fear close relationships?
Stephen is not lazy; quite the reverse. He feels under great pressure to make decisions and lead his own life, but that just seems to load his symptoms and render it impossible. How could he cope with uni? How could he get a job?
Stephen’s progress in therapy has been patchy. There have been quite long periods of stability, but these have been punctuated by sudden losses in health confidence, triggered by the occasional dietary indiscretion but more usually by a difficult situation. Then he goes into a tail spin and cannot get out of it. He is less likely to get diarrhoea if he disengages with life, but that means that he has no life, which makes him angry and depressed. He is a hostage to his bowels, but is powerless to do anything about it.
He has recently had a good two weeks, but he does not trust it will last. Every morning he wakes up and worries what the day will bring. Will he not pass enough and have to wait? Will he have diarrhoea and pain and spend an age trying to clear himself? He knows this is all related to how he thinks about it but can’t seem to stop. His bowels are like the weather; something that affects how he feels, but has no influence over.
I feel drawn into the trap of suggesting possible solutions. His mother has suggested he help redecorate her flat. It may not be a proper job, but at least he will feel he is doing something useful and feel better about himself. Could he relieve the pressure by taking some time out and doing something he would enjoy? He said that he has always wanted to go to South America, but how could he possibly do that with his problem? Might mindfulness work? Could he distract himself from his anxieties with some meditation or some mindful activity? Could he learn a mindful technique that he could apply when his bowels are precarious?
I feel sure that this situation will ease and gradually fade. The paradox is as he tries to find a solution, it will evade him. It’s like ‘trying’ to get to sleep. Something needs to change, but what and when? If he knew that, it would be easy.
This post has been published with Stephen’s permission, though his name has been changed to protect his anonymity.