IBS is well known to negatively affect quality of life (QOL), but what is it like to actually live with this condition? This question was investigated in a study that used semi-structured interviews to characterise the impact of IBS on the day-to-day lives of 18 sufferers {Farndale, 2011 #1895}. Patients were asked about symptoms, emotional well-being, self-identity, daily life and their experiences with health professionals.
When asked about symptoms, patients reported that:
- Symptoms were painful and unpredictable, with abdominal pain being the hardest aspect of the condition to cope with. Many people were unaware of their specific triggers
- Some mothers described the abdominal pain as being worse than labour pain
- Abdominal pain led to a loss of concentration, a lack of sleep, fainting, vomiting, the inability to move or lift (and therefore work), a low libido and/or depression.
- Bloating is physically uncomfortable and embarrassing
- Diarrhoea is often less painful than constipation, but can be extremely urgent
Many patients used coping strategies to deal with their IBS symptoms. For example, they would:
- Avoid social activities that involved the use of communal bathrooms
- Plan travel routes to ensure they had toilet access along the way
- Wake up earlier to allow time for their bowel function to normalise before leaving the house
- Plan their day around times when their symptoms were expected to be worst
- Use caffeine / nicotine / exercise / abdominal massage / digital manipulation to induce a bowel movement
- Avoid certain clothes / public toilets / restaurants / holidays / new situations where toilet facilities were unfamiliar / leaving the house, all on account of their symptoms
- Carry spare underwear / air freshener / pain relief medications when they went out
Many patients attributed negative emotions to their IBS. For example, patients reported:
- A sense of fear surrounding their IBS symptoms, and that this fear operated in a vicious circle, whereby they feared symptoms presenting at an inconvenient time, which led to stress, which in turn would exacerbate symptoms and worsen fear.
- Feeling stressed and anxious when changes to their schedule compromised their ability to implement coping strategies
- Feeling worried that IBS was a misdiagnosis, and that a more serious condition (such as bowel cancer) had been missed.
- Feeling worried about their appearance on account of abdominal distension
- Believing that partner relationships were negatively affected by their low moods, low self-esteem and low libido (in part because sex can be physically uncomfortable)
- That IBS symptoms worsened their anxiety and depression
A feeling of alienation from health services was a common theme. For example, many patients believed that:
- Previous medical care had caused or worsened their condition
- Health services could not help them
- They experienced poor doctor–patient relationships. Many felt that doctors they’d previously seen trivialised their symptoms; provided inadequate or contradictory advice on how to manage symptoms, or failed to build a trusting relationship.
The take home messages?
IBS can have a monumental impact on the day-to-day life of sufferers, and this impact is often underestimated. While the negative impact of IBS on ‘quality of life’ is often mentioned, this fails to adequately characterize the daily experience of patients. There are a wide range of effective treatments for IBS, but seeking the advice of an experienced clinician who is able to direct you to these and provide a listening, empathetic ear, is key.
References:
Farndale R. Long-term impact of irritable bowel syndrome: a qualitative study. Primary Health Care Research & Development. 2011; 12: 52-67
