By Jane Elliott
Health reporter, BBC News
Fiona McCrea has had irritable bowel syndrome (IBS) since she was 12.
Fiona finds that the condition affects her social life
Trips and holidays take meticulous planning because she needs to know where toilets are positioned enroute.
She admits this has left her wary of venturing to new places and curtailed her social life.
Fiona has nausea, wind, bloating, pain and spasms, constipation and diarrhoea.
"I always need to know where the toilets are, because when I have got to go, I've got to go."
But Fiona said that, despite the obvious discomfort and inconvenience of the condition, many suffer in silence rather than push for help.
"I think a lot of people do keep it quiet. One of my friends has not told her employer because she is too embarrassed.
"And a lot of people think IBS does not exist. If for instance someone at work gets me a sandwich with onion or mayonnaise then I can't eat it.
"I know they might be thinking 'eat it', but I can't because I know what it will do."
A study by the IBS Relief website said 59% of people with IBS believe their GP and health professionals regard their condition "to be in the mind" and 48% feel that those without IBS do not believe it is a real condition.
Peter Whorwell, professor of medicine and gastroenterology in the School of Medicine and director of the South Manchester Functional Bowel Service, agreed that IBS is often not taken seriously enough.
"Unfortunately, the perception of IBS is a troublesome and sometimes debilitating ailment, yet it is not a priority for healthcare providers.
"Sufferers need to be encouraged to be more open so their symptoms can be proactively managed and treated and their quality of life can be improved.
"It is time to make their voices heard."
Professor Whorwell, whose clinic treats the most severe cases, said he felt some doctors were embarrassed about talking about bowels, and that this combined with patient reluctance to discuss symptoms leads to stalemate.
"I think one of the problems is that the bowels are one of the final taboos. You can talk about condoms and sex, but not about bowels.
"Some doctors are embarrassed to talk about then and just say to patients 'well, how are your bowels then?' and the patients just reply 'fine'.
"But I go into graphic details like does your faeces look like sausages, or rabbit pellets or porridge."
Barium can be used to examine the digestive tract
He said IBS patients did often have terrible discomfort and pain.
But he said the picture is not totally bleak, with anti-spasm drugs and laxatives giving some relief as well as anti-depressants and hypnosis.
Penny Nunn from the support group IBS Network agreed: "IBS is not perceived as a glamorous or interesting illness. The fact is that IBS is a distressing, disabling and isolating condition.
"There are no easy answers to managing IBS but self management with support may be the way forward.
"Self management does not mean sole management - the person with IBS, health professionals, friends, family and employers and of course the IBS Network all have a role to play.
"Everyone has some measure of responsibility for others and I would urge people with IBS to speak up and speak out so that no-one with IBS need feel alone."