Living with a chronic, lifelong (very) irritable condition

“It is worse than a bad marriage.”

A long time ago, a client and friend to whom I had just diagnosed Irritable Bowel Syndrome (IBS), a chronic but not life-threatening illness, told me the above with an impossible-to-describe funny, desperate look on his face. I never forgot it.

And he added, “we cannot even divorce!”

I remember answering: “You have to learn to live with it, well.”

Most people are familiar with acute illness. It comes on suddenly, often has an identifiable cause, it is generally treatable, often with return to a normal health and usually you are not sick for very long.

On the other hand, a chronic illness often begins gradually, may have several causes, is rarely cured, can produce symptoms, but some have no symptoms, especially in the early stages, and it persists for an indefinite period of time.

With a chronic illness, it is difficult to predict how you will feel from day to day as the course of the condition can be affected by many factors such as heredity, environmental factors and lifestyle, which includes stress, diet, exercise and control of your daily schedule.

Living as well as possible with a chronic illness begins with understanding your illness.

Learning to know your disease, as much and as correctly as possible, will make an enormous difference on how you will manage each new day. Self-management is most effective when the physician encourages and facilitates learning by the patient and the patient responds by participating in decisions.

There is no denying that having a chronic illness changes your life, but the way you choose to live each day will determine, to some extent, how much your quality of life will be affected.

For many people with chronic illnesses, the diagnosis is a “wake-up” call to change the things that aren’t working in their life, says Ann Webster, a health psychologist at a Mind/Body Medical Clinic in Boston. It is really hard having a chronic illness, and knowing it is changing your life and your future, she says. It’s a real struggle for people to figure out how to cope, how to do everything they normally do. She believes that one key to this is to not let the illness become who you are.

IBS is an example of a chronic illness that changes many lives. In fact, you are not alone as IBS affects 15-20% of the general population. Of these, approximately 35-40% are male and 60-65% are female. It is most commonly seen in people in their 20s to 40s and it ranks second only to common cold as a cause of lost work time.

While being one of the most frequent disorders seen by physicians, it was, until recently, one of the less talked about conditions.

IBS is about abdominal pain and cramping and changes in bowel functioning, like bloating, gas, diarrhoea and constipation, not something most people would like to discuss in the society we live in. You can easily discuss your baby’s bowel movements down to the most precise details, but yours…never! It is considered an absolutely unacceptable, antisocial behaviour … you would be ashamed even to let people know you are not feeling well in that department.

Only a small number of people with IBS have severe signs and symptoms. Some people can control their symptoms by managing diet, lifestyle and stress. More severe symptoms can be treated with medication and counselling.

IBS doesn’t cause changes in bowel tissue or increase your risk of colorectal cancer.

Adding to this, for many years IBS was considered a psychological problem, rather than a physical one.

But IBS is very real; it is not all in the mind.

In IBS, there is no evidence of organic disease, yet, something, a “malfunction” between the brain and the gut, causes the bowel to become “irritated”, overly sensitive to stimuli.

Symptoms can be exacerbated or triggered by stress, whether physical, emotional or even environmental, dietary and hormonal factors, or even events that might seem normal to other people.

“Irritable bowel” refers to a disturbance in the regulation of bowel function that results in unusual sensitivity and muscle activity.

“Syndrome” refers to a number of symptoms and not one symptom exclusively.

Everyone suffers from an occasional bowel disturbance but for those with IBS, the symptoms are chronic and recurrent.

The diagnosis of IBS is currently based on a pattern of symptoms that fit established criteria, in conjunction with physical examination and tests to exclude other identifiable causes.

Effective diagnosis and treatment start with the recognition of the validity of complaints.

Be aware: anaemia, bleeding, weight loss or fever are not characteristics of IBS.

Always consult a healthcare professional before getting to a diagnosis or starting any personal health programme.

The precise cause of IBS is not fully understood and, as yet, there is no cure. There is no standard way of treating IBS. Your doctor may prescribe from fibre supplements or laxatives to anti-depressives. Treatments are symptomatic, aimed at alleviating the symptoms in combination with lifestyle and dietary modifications.

Medications are to be used in addition to other treatment approaches, not in place of them. An integrative approach that combines different treatment methods, selected according to individual circumstances and with a physician as a partner, is generally most effective for IBS persons.

Comment by the International Foundation for Gastrointestinal Disorders, December 2001: No single medication currently available has been demonstrated in well designed and well controlled clinical trials to be superior to placebo treatment for IBS.

A healthy way to live with a chronic illness is to work at overcoming the physical and emotional problems caused by the disease, achieving the greatest possible physical capacity and pleasure from life.

“Don’t make perfect health the measure of who you are because perfect health is an impossible goal” – Helen Freeman

One last piece of advice: anybody will suffer less if they have something better to do!

Best healthy wishes,
Dr. Maria Alice