CROHN'S Disease can be a painful, debilitating and embarrassing condition which affects between 30,000 and 60,000 people in the UK. We spoke to a York sufferer living with the disease, in the run-up to Colitis and Crohn's Week, which takes place between June 18 and 26.

ANDREA Cundell was 26 when she was diagnosed with Crohn's Disease.

Although doctors suspected she may have suffered with the illness since she was 23, Andrea, of Acomb, York, had not connected her stomach pains to such a distressing condition.

Nor did she expect to undergo an operation to remove part of her bowel that could have left her requiring a colostomy bag.

But Andrea, like thousands of others, has learned to live with symptoms like pain, diarrhoea and weight loss, all part of a disease which cannot yet be cured.

Crohn's Disease, which typically affects the small intestine and the colon, causes inflammation, deep ulcers and scarring to the wall of the intestine.

Fame Academy coach Carrie Grant has recently brought the condition to the fore with her own struggle with the disease, but many are still unaware of what it entails.

For Andrea, the diagnosis meant a complete overhaul of her lifestyle and the prospect of a colostomy bag.

Fortunately, said Andrea, now 39, her surgery was extremely successful.

Surgeons removed about eight inches of her bowel which made an immediate difference to her life.

She said: "The operation took me quite a while to get over but it was worth it, I am so grateful to the surgeons. When I was first diagnosed they treated me with steroids and the recovery was almost overnight. But after a while they (consultants) don't like you to take many.

"I had to learn to adapt my diet and lifestyle and to know my limitations."

Andrea said starting her own pottery business from home meant she could deal with her symptoms privately.

She could not eat fruit and vegetables because of the roughness of the skin, so she bought smoothie and juicer machines to get the nutrients she needed.

She said: "Dealing with Crohn's Disease is about getting to know your limitations. Throughout the years there were periods of remission and I was managing to limp along.

"But as time went by I didn't have many times where I was really well and I was having to have more and more steroids. Doctors suggested an operation, but I was reluctant in case it led to a colostomy bag.

"In the end I was really fortunate and the operation went really well, but because it's a progressive disease it could come back. I try not to think about it too much and live for the here and now. When you talk to people

ple about Crohn's Disease they tend to know somebody who has it, but they don't know much about it. There's a lot of mystery surrounding it but it's actually really common."

Crohn's Disease and ulcerative colitis affect one-in-400 people. There are more than 1,000 patients suffering from one of the conditions in York.

Lisa Rooke, clinical nurse specialist in inflamed bowel diseases at York Hospital, acts as a point of contact for patients.

She runs a number of nurse-led clinics in the hospital out patient department, a telephone clinic and a telephone helpline.

She said: "Crohn's Disease is characterised by episodes of relapse and remission. In both Crohn's Disease and ulcerative colitis the intestine becomes swollen, inflamed and ulcerated. In ulcerative colitis only the large bowel is affected, but in Crohn's Disease it can affect anywhere from the mouth to the anus. Symptoms can be very distressing and sufferers can put their lives on hold.

"They can include abdominal pain, weight loss, loss of appetite and diarrhoea; some people need to go to the toilet 20 to 30 times a day and can pass blood and mucus rectally. They can also feel very tired.

"Living with the symptoms can be very embarrassing and unpredictable. Because it often affects the young it can interrupt study and students can end up taking a year out. Some people get inflamed bowel disease confused with irritable bowel syndrome, but the two are very different."

She said: "Causes are not really known although there has been much research and suggestions include viruses, bacteria, diet, smoking, stress and generic factors."

If you think you have the symptoms of Crohn's Disease visit your GP who can refer you to Lisa.

What is Crohn's Disease?

Definition

A chronic inflammatory disease which can affect any part of the digestive system. Theories about what causes Crohn's disease abound, but none has been proven. The most popular theory is that the body's immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestine.

Symptoms

Stomach pain, diarrhoea, weight-loss and loss of appetite.

The affected areas become red and swollen and ulceration may occur.

As the ulcers heal the formation of scar tissue makes the intestine increasingly narrow leading to obstruction.

People with Crohn's disease tend to have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or result of the disease. Crohn's disease is not caused by emotional distress.

Treatment

There is no cure.

Treatment includes long term medication such as steroid, dietary adaptation, lifestyle adaptation and surgery.

Support

Phone NACC (National Association of Colitis and Crohn's) on 0845 130 2233 or 0845 130 3344.

Phone the York group on 07930469173.

NACC has launched a campaign to recruit more specialist nurses.

To add your support call 0871 734 3000 or log on to www.nacc.org.uk.

Updated: 11:01 Friday, June 17, 2005