Tracey wrote to me the other day.
You asked me to tell you what my life with IBS was like. Well, I am thirty nine years old and have had IBS for twenty years. It started when I was at uni. Maybe I had a bug; maybe just the chaos and loneliness of university life. I thought it would go but it didn’t. It wasn’t there all the time, but whenever I had something on; an assignment, a presentation or an important date, the pain would start and then the diarrhea. I can’t tell you the opportunities I have missed out on because of this dreadful disease. Holidays were a nightmare. The only time it seemed to get a bit better was when Glenn, my ex, and I got together. I felt safe and cared for. We bought a house, made friends, became ‘suburban’.
Then the kids came along – and Glenn left! He had been working away a lot. I wasn’t coping; struggling to look after three children under 5 and working as a teacher. I always seemed to be in pain and the diarrhoea was just awful. I took it out on Glenn because he was the only one there for me. And then, suddenly he wasn’t! After that the IBS got much, much worse.
Of course, I went to the doctors, tried medications, went on diets, took probiotics. Some things worked for a time, but I couldn’t live my life on drugs or bugs! If I was extra careful with my diet and tried to calm down a bit, I could gain some respite, but I had three energetic kids to bring up by myself and a job to maintain. Glenn wasn’t giving me much and money was always a worry. And I was turning into another person; cross, fat and middle aged. I hated the person I was becoming.
And so that’s where I am. My kids are now teenagers, but the worry over them never stops. James is in trouble at school, Melanie has got an eating disorder and Pete is just a law unto himself. At work, the Offsted inspectors are coming again. I have no life for myself. Whenever I have time alone to rest, it seems I am on the toilet. How can I go shopping for special foods when I have to feed three growing children on a very low budget? And to be honest, I am just too tired to cook very much. It’s more a case of putting something in the microwave or taking them out to Pizza Hut or Burger King. But we survive – just! At least there’s the telly or Facebook. But things would seem so much better without these pains in my guts. So that’s it. Well, you did ask!
Yes, I asked. And I feel overwhelmed by her response. It’s so much more than Tracey’s IBS that needs sorting out; it’s her life. So where do you begin? Diet and medications may help but they are not a treatment for life. At medical school I was taught never to get emotionally involved with the lives of my patients, it would drive me mad and I couldn’t do the job. But how can doctors begin to help if they don’t understand or ‘feel’ what it’s like?
It seems that the pain in Tracey’s guts and her diarrhoea are her alarm bell, which fires off whenever her systems are emotionally overloaded. The reason why her alarm is in her gut and not her back or jaw has been erased from conscious memory, but perhaps her daily combination of isolation and overload constantly rekindle a colonic memory of similar feelings 20 years previously, though it may not be necessary to do the archaeology and try to discover what that is.
The likelihood is that the Tracey probably does not need lots of investigations; the mechanism is working fine, but something in her life situation and life style keeps setting it off. Diet and medications may silence it for a bit but the most important thing is to find out what in her life situation is causing alarm and pain and what can be done about it.
The famous Victorian traveller, Isabella Bird (1831-1904) suffered for years from undiagnosed backache, abdominal pains, insomnia and depression. When her husband died, she took herself off to India, Persia, China, Australia and Hawaii and all her ailments disappeared. In the nineteenth century, so many women found themselves trapped in unhappy marriages and became ill. Tracey is also trapped, but by poverty and the responsibilities for her children. Every day, her guts express the frustration of her situation, but she can’t just escape like Isabella. She has to endure it and try to make the best of it.
Time and space are what Tracey needs. Time to think and space to change. Tracey needs to find some time for herself, so she can begin to feel better about who she is and even look forward to evenings out, days off and family occasions. She must try not to let her emotional need for her children reinforce the trap. They will leave home and then she may find she is too ill or it is too late to change. If she feels better about herself, then she can help her children gain the confidence to go out into the world too. She needs to think outside of her cage and then find the space to rediscover who she is.
Most of you who write to me at The IBS Network, tend to list your symptoms and tests and then tell me how dreadful you feel and how your doctor has not been able to help. This is a closed loop – dreadful symptoms and treatments that don’t work. I may occasionally be able to suggest something the doctor hasn’t tried, but more often I am left guessing what might have gone on for you to get into this state. But I am not ‘Mystic Nick’; I don’t possess a crystal ball. I can only really be effective if you tell me the context of your illness: under what conditions it started, what makes it worse, what seems to make it better, what else is going on, how it makes you feel and what seems to represent for you.
So I would like to issue an invitation. I want all of you who are tormented with IBS to write and tell me the story of your life with IBS. This information will help me to help you understand what your IBS is about and you doctor to know how best to help you. .
Write to me at firstname.lastname@example.org. Your letters will be treated in the strictest confidence. Your name and contact details will not be divulged to any third party, though I may draw on some of your experience to bring out certain points in the articles I write. It is only by understanding your life with IBS that we at The IBS Network can understand and help other people. I can’t promise to respond to every letter, but if you want a personal response, do join The IBS Network and send a brief enquiry to me on Ask Prof Nick.