MEDICAL MATTERS:A sense of humour helps with chronic disease, writes MUIRIS HOUSTON
BEING DIAGNOSED with Crohn’s disease is a life-changing moment. Like any chronic disease, you will have good settled periods and uncomfortable flare – ups. And just like many long-term illnesses, coming to terms with the disease involves taking ownership of your illness and its treatment.
Crohn’s disease is an inflammatory condition of the digestive system. It can occur in any area of the digestive tract from the mouth to the rectum but most commonly affects the lower section of the small intestine. First identified by Dr Burrill Bernard Crohn and two colleagues in 1932, the most common time of diagnosis is between 15 and 35 years of age
Although the exact cause of the condition is not yet known, both genetic and environmental factors are thought to be involved. The condition may be related to the body over-reacting to normal bacteria in the intestine leading to chronic inflammation of the digestive system. Risk factors include having a family history of the condition and smoking. Common symptoms include crampy abdominal pain, a raised temperature, fatigue and persistent, watery diarrhoea.
But other symptoms such as constipation, flatulence, abdominal fullness, loss of appetite, pain on passing stools and rectal bleeding may feature prominently. Skin rashes, inflammation in the joints, nutritional deficiencies and eye problems are examples of how Crohn’s can affect parts of the body other than the gut.
In my experience self-help books for conditions such as Crohn's are something of a curate's egg. Many are worthy but few possess a lively narrative. So it was with a somewhat jaundiced eye that I opened The Foul Bowel: 101 Ways to Survive and Thrive with Crohn's Diseaseby John Bradley. An Englishman now living in Canada, he says he is a veteran of 13 operations and more than 100 medical consultations; he claims to have had more steroids than a German weight lifter and to have been irradiated to Chernobyl levels.
Here he describes the day after his first operation to remove a severely diseased section of small bowel: “First up was the physiotherapist, a jovial, stout girl who, on the face of it, was not the best advert for exercise I had ever seen. However, it turned out that she needed all her bulk for the heavy lifting that her job entailed. Since I professed myself completely incapable of wriggling up the bed to sit in a more upright position, she leant over, grasped me under both armpits and yanked me up in one easy for her but exquisitely painful moment for me. However, the pain was compensated for by my head being plunged into her matronly bosom, giving me a fleeting sample of Helen Keller’s life of being simultaneously rendered dumb, blind and deaf as I was enveloped in her décolletage.”
There’s plenty more in this vein. But underneath the humour is some sage advice about dealing with doctors and the health system. Here’s tip 14: “Do not assume that you cannot contribute to the process of diagnosis. Ask the common-sense questions. Don’t be afraid to interrupt the flow or to ask them to explain in layman’s terms exactly what they are wittering on about.”
Later, when changing specialists, he observes: “It is not the case of one doctor being right and one doctor being wrong. Medicine is much more an art based on opinion than a science based on fact, though you would not think so given the absolute certainty conveyed by every doctor in every pronouncement they make. So I felt good about having made the change of specialist because this new doctor’s opinion made more sense to me and fitted better with my view of both what was wrong and what was the best way forward.”
On treatment, tip 52 advises: “if you feel you are on the wrong end of the side-effect trade-off, or feel you are one of the 50 per cent for whom the drug is useless anyway, do not hesitate to go back and ask for a change in medication.”
Bradley’s book may have been written for people with Crohn’s, but those suffering with any chronic disease will find it worth the read.
The Foul Bowel is published by Yknot Publishing, £12.95. See Foulbowel.com for details. mhouston@irishtimes.com