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.
I recognise everything that has been said. It is a debilitating and controlling illness. I have searched and searched for answers, but can find none. I’ve tried everything.
I do hope you find the answers you are searching for Margaret. Have you tried joining The IBS Network? In the meantime, thank you for responding to this post. It will help Stephen to know he is not the only one.
Having just read this, it feels like I was reading my life. My life was controlled by my anxiety and IBS, I was living through my stomach and my mind was constantly connected with my bowels. Wondering and not knowing what the day we going to bring, not being able to leave the house to go to the shop or even work. It was lonely suffering with this condition. If I did go out I had to have someone with me because of having a toilet panic attack, or if I went on my own I would call someone and speak to them to keep my mind off my stomach and my brain asking where the next toilet is.
I had hypnotherapy, acupuncture and CBT. All worked really well. The acupuncture ‘grounded’ and relaxed me and got my body balance back on track. My anxiety and IBS issues started when I was 19 and I’m still experiencing it however I am more in control of it now. I moved out when I was 17 no issues with anxiety or IBS.
I no longer eat gluten and wheat as that causes abdominal pain, I also get an IBS flare up when I am going travelling or to new places because I still have that little niggle about toilets etc. I got a dog for my 20 well we rescued him. It forced me to go out as my other half and I live in a flat, Barney (the dog) needed walking and taking to the toilet etc. It was difficult for me as even being 10 meters away from my house my anxiety and IBS played up. But over time, my confidence built and I learned to put the anxiety and IBS thoughts out of my mind.
Its not totally gone but I’m able to live a more normal (what ever that is) life. I go on holiday, I work full time, see friends and go shopping. Only yesterday (6th Aug) I had a flare up of IBS. The worst for quite sometime. I’d be lieing if I said it hasn’t caused me to worry that I’m going back down hill. But positive thought and confidence is key.
Things will get better for you, I had a very hard time seeing the light at the end of the tunnel but with the right support and help you will get there, believe in yourself.
also remember you’re not alone, there are lots of people going through the same. You just need to reach out.
I’d love for you to get in touch Steven, knowing there is someone else out there that went through the same thing and came out the other side might help you.
If I don’t get to speak with you, I wish you the very best of success to overcoming this invisible and very real disability.
All the best.
Thank you so much for taking the time to reply, Will. Your comments are positive and encouraging. I will let ‘Stephen’ know and he may well get in touch. Best wishes, Nick
apologies about some of the punctuation and missed words, I was typing on my phone!
I can empathise with Stephen and Margaret. I am 61 and have had IBS and bowel problems all my life – nothing really helps me either. I can not go out first thing most mornings. I used to suffer from chronic constipation until a bout of food poisoning when I was 25 – since then I have suffered from diarrhoea based IBS. Life does go on (somehow). Stress is very much an issue in all this
I am sorry to hear that Gill. Thank you for your comment.
I feel as if I’ve just read the story of my life. I had my first attack at 18 and 30 years later am still struggling with my symptoms and emotions. With that said, I graduated college, have had a successful teaching career, married a wonderful man and am raising my son who is now 15. It’s been a roller coaster but somehow I have mAnaged. You can do this!! Thanks for sharing Stephens story. It also gives me hope that I’m not alone. We ibs’ers have to stick together!
Thank you for writing, Stephanie. It is good for Stephen and others like him to know that it can all turn out reasonably well
I am a hypnotherapist who specialises in seeing people with IBS and Stephen’s experiences remind me of one of my clients. When we first met he spent every morning tied to the bathroom, and often had to call one of his neighbours to take his young kids to school. As you say Nick, his progress whilst he was seeing me was not without setbacks, but a recent email informed me that he had gained the confidence to get a job as a teaching assistant and had not missed a morning so far.
Hypnotherapy is not a magic wand but it can help some people to find a way to cope with their symptoms. My point is that there is hope for Stephen and others like him, that things can change for the better.
That’s very encouraging, Janet! Thank you.
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This story is so like me. I am considering hypnotherapy. I feel tied to the bathroom in the mornings so I don’t schedule anything then unless I have to. I know my IBS and anxiety are linked and mornings are worse for me with anxiety. I have suffered since I was 19 at uni but have still managed to have great times in my life. Right now is a bad time. Going out of my house is a trigger for me as I have had some close calls with getting to a toilet in time and fear the embarrassment of having an accident when I am out. I find holidays hard but I have had lots of them and I am a special needs coordinator in a school. I practice mindfulness and I now work 4 days a week rather than 5. I have found ways to cope for example when I go to the theatre or cinema I sit in an aisle seat. My sister in law died in September, before this I was already struggling a bit with going out and IBS as I was getting indigestion that would knock me off my feet for a day and pains in my stomach but unable to go to the toilet then suddenly having too. It made me lose my confidence. With her illness and death and how it has affected the family the repercussions have really affected me. However I know that IBS and anxiety does and will get better. It takes time and unfortunately at this time I am having a bad period of time wih it and every day is a battle. I recognise that my anxiety and my IBS are feeding each other. I am following a LOWFODMAP diet that when followed strictly does help. Life will get better with time. I just keep going each day and do what I can.