IBD victims, the forgotten patients

A CAMPAIGN urges people to back calls for a national register for sufferers of inflammatory bowel disease. Crohn’s Disease sufferer Ceara Waterhouse, from Grasscroft, told our reporter Richard Hooton how it would help people deal with conditions that remain low profile.

WHILE many illnesses and diseases are much-publicised there are others that barely get a mention.

This month has been Crohn’s and Colitis Month with campaigners doing all they can to raise awareness of such conditions, known as inflammatory bowel disease or IBD.

Registered charity the National Association for Colitis and Crohn’s Disease (NACC) is also gathering support for a national register of IBD patients to bring improvements to their care.

The conditions affect a quarter of a million people across the UK with symptoms including diarrhoea, severe pain and fatigue, eye, joint and skin problems and impaired growth in children.

The lifelong diseases have no known cure and frequently first materialise in teenagers and young adults.

But despite their greater prevalence, with one in 250 people in the UK affected, public recognition is well below that of Parkinson’s or multiple sclerosis.

At present only 39 per cent of UK hospitals hold a database of their IBD patients but the NACC is campaigning to change that.

It is calling for the NHS to set up a national register. It says this will help by ensuring quality care for all patients, by helping gather data for research into a cure and by identifying IBD patients who are not in a follow-up system and may be at risk of complications.

Mother-of-two Ceara Waterhouse knows how serious the diseases can be and is backing the charity’s campaign.

The 40-year-old was diagnosed with Crohn’s in 1997 following several years of terrible symptoms — vomiting, diarrhoea and excruciating abdominal pain.

She said: “It got so bad I had to be hospitalised every few weeks and they could not diagnose it at first. It was getting worse and worse.”

Initially, she was sent home with a diagnosis of a bug or gastro-enteritis but after a colonoscopy camera was used the correct diagnosis was made.

It dramatically changed her quality of life and she was also often tired, lethargic and had her confidence knocked.

Ceara said: “You don’t absorb a lot of vitamins and it makes you really quite poorly. I had episodes of being quite ill.

“I tried not to let it restrict me but I had to have time off work and could not go out because I was so poorly. I had to dash back from France a couple of times because I fell ill.”

Medication didn’t help, so Ceara underwent surgery to remove the diseased part of her bowel to minimise the effect.

Now she is able to control her condition much better and has gone on to have a family and secure a job. She has proved that you can live a normal life when you have Crohn’s.

Ceara works as a part-time art teacher at All Saints Catholic College in Dukinfield and is married to Paul with two children Alexander (6) and Max (1).

Many sufferers are often left housebound with symptoms and unable to plan a holiday for fear of a flare-up but Ceara has just returned from a holiday abroad.

She said: “I’m glad to say things have not been so bad over the last few years.

“I had a couple of bad years with it but I kind of learnt to cope with it.

“You get used to living with it and it doesn’t hold me back.

“A lot of people don’t have to resort to surgery, it can be controlled through medication. But some people don’t find a solution.”

The NACC has put Ceara in touch with other sufferers and she has been able to give them help and advice and show how she came through the worst times.

It’s a condition that many sufferers are too embarrassed to talk about.

But Ceara hopes that by speaking out it will encourage fellow IBD patients and the general public to support the campaign.

She said: “People talk quite happily about cancer as it’s more of a recognised illness.

“People can die from Crohn’s Disease, though they are far less likely too, but because it’s considered an unpleasant thing people don’t like to talk about it. There’s a hidden veil.

“The database would be good as it’s useful to know there are people in the same situation.

“When you are first diagnosed it’s really mindblowing. Many people have vaguely heard of it but don’t know what it is. It’s useful to get the information.

“I feel the NACC has been really good in providing information and putting people in touch.”

The campaign has the backing of celebrities including pop star Anastasia, musicians Carrie Grant and Rick Parfitt junior and “Emmerdale” actor Jeff Hordley.

People can back the campaign by casting their vote at www.stepupandbecounted.org.uk