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Tue, Jun 23, 2009

Living with Crohn's Disease

BY AUSTIN LYNCH
 
Irvinestown man, Gareth Tubman was 19 when he was diagnosed with Crohn's Disease.

After months of feeling unwell, he was shocked but relieved that his condition had been successfully diagnosed.

Gareth was told by his doctors he needed major surgery but that he should do well after this was completed.

To mark the National Association for Colitis and Crohn's Disease (NACC) 'Colitis and Crohn's Week', which runs from 20th - 28th June, we spoke to Gareth and asked him a few questions about his condition.

He told the 'Herald' he is able to lead an active and productive life, but he explained that Crohn's can have a substantial effect on all aspects of life until brought under control. He stressed that it impacts not just on the sufferer but on the entire family unit.

Recent surveys show that the general public are largely unaware of the life-long and painful inflammatory bowel diseases, Ulcerative Colitis and Crohn's Disease, which in turn cause serious challenges at school, college and work for people living with these chronic conditions.

Colitis and Crohn's Week 2009 aims to improve the learning and earning conditions for the estimated 244,000 people affected by Colitis and Crohn's in the UK.

Crohn's Disease affects between 60,000 - 80,000 people in the UK. Around 6,000 new cases of the disease (which affects men and women equally) are diagnosed yearly with the common age for diagnosis between 15 - 25 years.

Crohn's Disease most commonly affects the small intestine, causing inflammation, deep ulcers and scarring to the wall of the intestine. The main symptoms of Crohn's usually include pain, urgent diarrhoea, severe tiredness and loss of weight.

The cause of Crohn's has yet to be identified, but it is thought to be a combination of genetic and environmental factors.

Ulcerative Colitis affects between 120,000 - 160,000 people in the UK. The disease affects the colon (large intestine) or rectum and can cause a variety of distressing and potentially embarrassing symptoms, including pain, urgent and bloody diarrhoea, continual tiredness, weight loss and loss of appetite.

The following were the questions we put to Gareth.

What age were you when this condition diagnosed?

"After months of feeling unwell and suffering abdominal cramps and pain, fever, weight loss and tiredness, I was diagnosed with Crohn's Disease aged nineteen (in June 2000).

"Initially, I was shocked and concerned but relieved that a diagnosis had been made. My local GP Dr. McCaw (Irvinestown) and Consultant Surgeon, Terry Irwin (Royal Victoria Hospital, Belfast) were excellent. They explained that I would do well after major surgery to remove the affected part of my bowel."

What measures have been taken to control your symptoms, and is it possible to live and work a normal life with the disease you suffer from?

"Crohn's disease does impact on my lifestyle and has had an affect on my overall health and well- being, but, like many people with the condition, I lead an active and productive life.

"It's important to take medicines as scheduled, maintain good lifestyle habits - like eating a balanced diet rich in nutrients, maintaining a positive attitude and find ways to reduce stress when possible."

Do you feel there is a general lack of understanding/knowledge about these conditions, and have you experienced this?

"A survey showed that Inflammatory Bowel Disease (IBD) is less well-known that many other chronic medical conditions. For example, compared with diabetes at 95% and MS at 84% awareness, only 41% of the public are aware of Colitis and Crohn's.

"I believe strongly that IBD sufferers often feel isolated because their disease is not a 'dinner table topic'. Appearances can be deceptive, because IBD sufferers put up with many invisible symptoms, including pain and fatigue.

Is there much help and support/advice for sufferers here - either through the NACC (Information Line number is: 0845 130 2233) or otherwise? "I feel that NACC helps people in practical ways and offers support in coping with the distressing aspects of the disease. They provide a range of information for patients and their families to help them manage their IBD and to live their lives as effectively as possible within the constraints of their illness.

"A confidential listening service via telephone is available where counsellors are trained to help people with IBD and provide a support network for children with IBD and their parents. NACC-in-Contact Support Line: 0845 130 3344

"There is also a Northern Ireland Group which enables members to meet other people who have these illnesses and share information and experiences. Tel 0845 130 6819

Do you feel embarrassment might be a factor in people not wanting to seek help for symptoms indicative of these diseases?

"Embarrassment may be a factor for people not wanting to seek help for symptoms of these conditions. However, a diagnosis is vital as failure to treat could be life-threatening.

"Initially when diagnosed, there is a reluctance to talk to others due to the symptoms associated with the condition and lack of knowledge among the general public.

If someone is worried that they have some of these symptoms, what would you advise them to do? "Make an appointment with your GP. They usually take a history of symptoms followed by a general examination and a series of more specific tests. A diagnosis can be delayed if symptoms are not promptly recognised and investigated. Gareth concludes by stating that specialist care and access to the best available treatment at an early stage are vitally important.

Published at The Fermanagh Herald

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