Living and loving with Irritable Bowel Syndrome
- Published: 14 August 2010
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Irritable Bowel Syndrome (IBS) is extremely common, and troublesome symptoms can wreak havoc in people’s lives. Successfully living with IBS is more than just managing symptoms. Being aware of some important facts about the condition, the typical worries and fears that plague sufferers, and some common misperceptions can make living and loving with IBS much easier, writes Katie Crocker.
What is IBS?
IBS is a chronic, relapsing disorder of the bowel characterised by abdominal pain or discomfort and changes in bowel function, often experienced as bouts of urgent diarrhoea or episodes of chronic constipation, sometimes alternating between both. Bloating and excessive or trapped wind are also common features.
Who gets IBS?
IBS is extremely common and affects people of all ages. In Western countries such as Australia, New Zealand, Canada, the US and the UK, up to one in five women and one in 10 men have symptoms consistent with IBS. In some Eastern countries, such as India, this gender pattern is reversed.
The trouble with symptoms
For most people symptoms are only mildly inconvenient and are easily controlled through simple dietary and lifestyle changes and the occasional use of over-the-counter medications.
Some people have more refractory, severe, frequent, urgent and unpredictable symptoms that interfere with their social, intimate and working lives. Symptoms can strike without warning. Cancelling or postponing appointments, social engagements, travel and sporting activities or calling in sick for work is often the only way to manage them at times.
Worries or fears of painful, urgent, uncontrollable symptoms striking without warning when in public can be equally as disabling and a strong incentive to avoid activities such as social engagements, sporting activities, travel, public transport, shopping and work.
IBS even intrudes into the bedroom. Research has found that up to 83% of people with IBS report sexual dysfunction such as low libido and pain during sex. Many people also report avoiding sexual activities when symptoms are present or because of worries that symptoms will strike during sexual activity.
The trouble with treatment
The American Gastrointestinal Association recommends a multi-faceted approach using medications, dietary and lifestyle changes and cognitive behavioural therapy with the support of a good doctor. These strategies can help to reduce the severity of symptoms and keep them under control.
Gaining control over a disobedient and at times downright rebellious bowel can take a lot of time, effort and frustrating trial and error. There is no single, standard effective treatment and responses to treatments can vary greatly between individuals.
Even the best-planned, evidence-based treatments can be largely ineffective on a long-term basis for some people and it is not known well understood why. One of the greatest complaints from people with refractory IBS is, “I’ve tried everything and nothing works!”
The misperception of illegitimacy
IBS is a condition in which symptoms exist without visible biological or structural abnormalities in the bowel, such as inflammation, malignancy or tissue damage as might be seen in organic diseases such as bowel cancer or inflammatory bowel disease.
A common misperception held by doctors and others without IBS is that the lack of physical evidence of disease in the bowel means that IBS is a psychosomatic disorder, in which symptoms are considered to be an expression of psychological problems and thus require psychiatric or psychological treatment but not medical care.
It is because of these beliefs that not all doctors and other people are willing to treat IBS is a legitimate medical condition.
A brain-gut disorder
Disruption of the complex communication system between the brain and the gut is thought to interfere with the function of the bowel. As with any condition, stress and anxiety can trigger or exacerbate symptoms but this relationship is particularly sensitive for people with IBS.
New research in Gastroenterology confirms that there are visible structural differences in the grey matter of the brain in people with IBS. This finding “supports the concept of a brain-gut disorder” and “removes the idea once and for all that IBS symptoms are not real and are 'only psychological’”, said study researcher Professor Emeran Mayer of the David Geffen School of Medicine at UCLA.
Doctor-patient relationships can help or hinder
Choosing the right doctor plays a central role in how well people cope with IBS. Research shows that successful treatment is more likely to occur in a supportive medical environment, with a doctor who believes IBS is a legitimate medical condition and is willing to listen, answer questions and work with patients to find the best combination of treatments to address the array of IBS symptoms.
A poor doctor-patient relationship can be very damaging to both short term and long term treatment success.
This relationship goes both ways. If you have a supportive, knowledgeable doctor and are struggling with IBS, it is also important to listen to them and be patient with the process.
Fears of something sinister
Many people worry that IBS could develop into cancer or inflammatory bowel disease or another life-threatening or degenerative condition.
Rest assured, IBS does not change into or progress into other conditions, nor does it increase (or reduce) the risk of getting these conditions. Despite the havoc severe symptoms can play in people’s lives, it also doesn’t cause damage to intestinal organs.
Being frank about your worries with your doctor can give them a chance to reassure you and explain exactly why they gave the diagnosis, why symptoms do not suggest another disease, and what symptoms would need to be present to indicate another disease. It can also help save you from a range of unnecessary invasive tests, such as colonoscopy or barium enema.
If they don’t explain automatically, ask them. If they still don’t explain, find another doctor.
Interpersonal relationships can suffer
IBS can be a source of friction between couples, friends, family and even work colleagues, particularly when shared activities, commitments and responsibilities are affected.
There are a number of reasons this can occur. Some important ones identified in my research to date are: not understanding IBS, not believing IBS to be a legitimate medical condition, and not knowing someone is sick.
Imagining a life plagued by IBS can be difficult for some people. Even the most well-meaning can lack sympathy and patience with people who seem to them to be sick all the time.
In much the same way doctors struggle with their perceptions of IBS, many other people also do not believe in the legitimacy of IBS or think sufferers are exaggerating symptoms.
Belinda*, a 42-year-old ex-figure skater was heartbroken at how her skating partner of over a decade, and boyfriend of the last few years responded when her IBS started interfering with her skating performances. “He told me it was all in my mind, to just get over it, that I was just doing for attention. I told him I wasn’t, that I really was sick but he wouldn’t hear it.”
We are still bound by powerful social and cultural taboos and the idea of discussing conditions that exist “below the belt” can arouse feelings of anxiety, shame and disgust in many people. Some go to great lengths to hide their IBS.
This was true for Ron*, a now 67-year-old retiree who felt sad and guilty that the pain and discomfort from chronic constipation and extreme bloating made him constantly irritable and angry towards his family and friends. Yet he stated he “would rather they think I didn’t like them. I will die before they know”.
IBS is not a well-understood condition by the general public at this time and is still plagued by its psychosomatic history. If others do not accept, understand or know that a person is sick, then they are unlikely to accept typical “sick person” behaviours, such as calling in sick to work, not attending to house work, being unable to physically perform or cancelling on important social engagements.
Consequently, the people whose symptoms or fears and anxiety interfere more with their lives and activities may also find themselves increasingly isolated as fewer people are willing to tolerate their behaviour.
“My wife and daughter, they don’t think I'm sick. Now we basically stick to different sides of the house. My wife sleeps in her room, I sleep in mine… It’s devastating” said Hubert* a 50-year-old man with IBS for four years, who lost his well-paying job and has since been receiving a disability pension due to his condition.
Mental health can suffer
It should come as no surprise that some people with the more refractory and severe IBS suffer from added stress or mental health problems, most commonly anxiety and depression. Some of these problems arise as a result of IBS and its impact on life, while some may be present before symptoms begin.
You are not alone
Millions of people around the world have problems with living and loving as a result of having IBS. Regardless of their cause, the symptoms, relationship problems, added stress and mental health problems can take their toll.
Tackling these can be tricky and may take time but is worthwhile. Understanding more about IBS, how it affects you and your relationships, and finding the right healthcare professionals willing to support and work with you is a powerful approach to help take control of IBS instead of IBS controlling you.
*All identities have been changed.
Katie Crocker is currently doing her PhD in the Disciplines of Psychiatry and Medicine at the University of Adelaide, studying the sexual, intimate and social relationships of people with Irritable Bowel Syndrome and other functional bowel disorders.