By Alison Freeman
BBC News Online, London
Simple activities that most people take for granted are out of the question for some people with Crohn's disease, says Ruth Adley who has the condition.
Ruth's daughter Natasha organises the Walk for Crohn's with a friend
She was diagnosed with Crohn's at the age of 25, but her doctor told her she had been suffering from it for 12 years.
The 48-year-old mother-of-two from north-west London, was not tested for the illness until her parents sought private advice - even though her sister had already been diagnosed.
"I used to get stomach upsets and go to the doctor who would say it was "Monday morning feeling" because I didn't want to go to school," said Mrs Adley.
"In the end I got so ill that my parents sent me to a private doctor and I was diagnosed.
"By this time it was too late and I had to have surgery to remove part of my bowel."
The little-known disease causes inflammation and ulceration throughout the gastrointestinal system. The cause of the illness itself is unknown.
Symptoms include severe stomach pains and chronic diarrhoea.
All in the space of just a few weeks Mrs Adley suffered with internal abscesses and also developed peritonitis so doctors removed her appendix which had become gangrenous.
She became so unwell that her weight dropped to just five-and-a-half stone.
Mrs Adley said: "I felt terrible while I was in hospital, especially with the diarrhoea because you just can't get to the toilet in time, it's very degrading."
Part of the bowel removed in Mrs Adley's operation was the section that regulates going to the toilet so she was left with less control.
As well being embarrassing, Mrs Adley said it has had a further reaching affect on her life and her family.
"When my daughter Natasha was a baby if I was out with her and needed to go to the toilet I would have to knock on people's doors and ask if I could use theirs," she said.
"If I was feeding her at home and needed to use the toilet I just had to leave her on the floor and go. It would be awful because I could hear her crying."
Natasha, 18, said she too has had to learn to live with her mother's illness.
The 2003 Walk for Crohn's raised £32,000
She said: "When we need to go on a long journey, like up to university in Birmingham, it's easier for her not to come."
The teenager is so keen for people to learn more about Crohn's and make it less of a taboo subject that she and her friend 19-year-old Lisa Meleck, whose mother Helene is also a sufferer, organise an annual sponsored walk in Hyde Park.
In 2003, 350 walkers raised £32,000.
Josh, Natasha's 15-year-old brother, has also helped his mother out in the past.
Mrs Adley said: "When he was younger if we were in town and I needed to go to the toilet he would make out it was him to save my embarrassment."
She carries the National Association of Colitis and Crohn's "Can't Wait" card, which explains that she has an illness which makes her need to use the toilet urgently but some shop-owners can be less than understanding.
As can other diners when Mrs Adley decides to eat out.
She said: "Often in restaurants there is only one toilet and because you need to be in there a long time people will bang on the door. They will also make snide comments when you come out.
"Perhaps if they knew what was wrong they wouldn't."
This year's Walk for Crohn's took place on Sunday, 27 June in Hyde Park, central London.