My son’s IBS is ruining his life.
Penny wrote to me recently
My son, Andrew, who is nearly 17 has had bouts of diarrhoea and tummy pains since he was about 9 or 10. These were nothing serious; they only occurred a few times a year and he hardly missed any days at school. The GP had tested him for coeliac and that was negative.
This summer during his GCSE’s, his tummy problems worsened and he was needing the loo up to 6-8 times a day and I had to pick him up from school between exams. Andrew wasn’t outwardly stressed about his exams; in fact his teachers said he was almost too laid back. We took him to the GP as he had lost about half a stone and the symptoms were so severe. Further blood tests were negative and the doctor said he thought it was IBS and that things would probably settle down as exams were over. They haven’t. Andrew has started sixth form which he likes but he has only been able to attend about 50% of his lessons. His diarrhoea is worse first thing in the morning. He needs to go to loo 4-5 times and is not confident to leave for school on time unless he is clear. If he chances it and gets in on time, he often has to return home, go to the loo and then go back later if he can. School loos are unisex and shared, which can be quite a problem for sensitive teenagers with bowel problems. Apart from the diarrhoea and pain, he also has quite bad bloating.
After unsuccessful trials of medications for pain and bloating, Andrew cut out gluten from his diet and also took peppermint oil, psyllium husk and probiotics. There was marked improvement in the bloating and pain, and the diarrhoea also lessened. Over the last few weeks, this improvement has diminished although he says he is still better avoiding gluten. Andrew is more fed up than stressed because he just wants to live life like any other teenager and stay in school for the whole day.
Can you please advise how you believe the GP should be supporting us with and do you think that he needs more tests to rule out other diagnoses?
In my reply to Penny, I acknowledged how worrying this must be, but noted that Andrew did not seems as worried as she was.
Medicine is not an exact science. It is about assessing risk and experience is often more useful and certainly less worrying than more tests. I told Fiona that it was unlikely that Andrew had a serious medical illness such as Crohn’s or colitis or coeliac disease. The blood tests have all been negative and the weight loss he has experienced can be explained by not eating so much.
The fact that Andrew is so laid back about it all is a bit of a give-away since when stress is expressed through the body, the mind can be quite calm. French physicians used to call this ‘la belle indifference’. Also it seems as if all of Andrew’s stress has been transferred on to Penny. Mum does his worrying for him. Perhaps she always has.
The timing of Andrew’s illness is significant. GCSEs are a watershed for many young people; it is often the first time they face their own future and encounter adult responsibilities and drives, not only the exams but relationships with the opposite sex. It is also the time some develop unexplained illnesses like eating disorders, chronic fatigue and irritable bowel. Andrew has now reached the age when he has to loosen the ties with his mother and be responsible for himself. Penny has always been there for him. He is as much part of her identity as he is of hers. The onset of a chronic illness at this critical time puts off the inevitable separation, perhaps for years. How can Andrew leave if he is ill? How could Penny let go when her son is sick?
There is, however, a third participant in Andrew’s illness. That is the doctor. It is likely that Andrew’s GP will want to refer Andrew to hospital for a colonoscopy to rule out any possibility of inflammatory bowel disease, perhaps a microscopic colitis. While this might seem prudent from a medical perspective, there is a risk for Andrew. It is a general rule that the longer medical services collude in the quest for the mystery illness, the longer it will persist. This is not only because it will not only allow Andrew to avoid the feared separation but also because the issue that is not being acknowledged will prolong the tension and perpetuate the illness. The danger is that the whole situation may become consolidated as an illness identity, providing an excuse never to risk separation and loss. As a physician, I always have to consider whether a long term illness, especially one that cannot be explained, is working out a purpose in the patient’s life or that of their carer.
It is unlikely that Penny and Andrew will want to accept this explanation and alter their attitude. It would seem too critical and would be resisted. The challenge, therefore, is to find a means of quelling the anxiety together with the worst symptoms of the illness so that Andrew has the opportunity to think and plan for his future and Penny can think how she may best help him by doing less. This is a situation when a low FODMAP diet might be really useful. Restricting the intake of poorly absorbed sugars in his diet would undoubtedly suppress the bloating, pain and his diarrhoea, created by his sensitive gut. It would also allow him to take control of what he eats and even learn to prepare it himself, which would act as a metaphor for taking responsibility for his own destiny. Mum, please hold back if you can!
If Andrew can learn how to control his own symptoms by adjusting his diet, then he will be able to spend more time at school. This will allow him time to think and work out with his teachers and friends how to get his mind around going to university and planning a future career. The expectation is that as Andrew gains confidence, then the illness and unacknowledged worry that lies behind it will recede into the background, and he can relax his diet and reintroduce more foods. But if significant worries emerge during this process, then a referral to a counsellor may well help Andrew to think through his anxieties over separation. Penny might also benefit from counselling to help her think positively about the impending change in her life.
The Sensitive Gut 
If there is one thing i can advise you to do is to not leave these problems unsolved. I did the exact same thing thinking that they wouldn’t get worse and hopefully that they would resolve themselves in due time. The first year of sixth form i was able to handle the added stress and pressure along with my illness. However when i started my second year at sixth form i couldn’t even cope. I was going to the toilet 10-20 times a day which made it impossible to handle considering the toilets in my college where so small, i also had a phobia of using the toilet because all the teens around me would make such a big fuss about me needing to use the toilet constantly. Truthfully it resulted in me not only being told i had IBS but the added stress meant that i got increasingly worse and meant that i also ended up having multiple mental illnesses because i had to leave sixth form and couldn’t finish my A Levels. I understand what your son is going through and i can relate to his feelings so much, im also currently under investigation as i might have IBD not IBS but as for now that is what i have.
If you have anything you want to speak to me about don’t hesitate to message back.
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Thank you for sharing that with us, Gemma. I am so sorry you have had such a dreadful time of it.
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