Life Begins At 40 For NHS Occupational Therapist Who Suffered From Crohn's Disease

Main Category: Crohn's / IBD
Also Included In: GastroIntestinal / Gastroenterology;  Rehabilitation / Physical Therapy
Article Date: 12 Aug 2008 - 3:00 PDT

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Cardiff has the highest incidence of Crohn's Disease in the UK.

The University Hospital of Wales is conducting research into the condition with eminent gastroenterologist Dr Hawthorne of Cardiff and Vale NHS Trust who himself is part of a national study.

Researchers are analysing data from the last 25 years in an attempt to explain what could cause the condition to be more prevalent in Cardiff isolating such factors as diet, bacterial infection and genetic impact.

Cardiff born Brenda Chamberlain, 58, suffered for years with the embarrassing and painful symptoms of Crohn's Disease. Her school life was blighted from the age of seven with constant trips to the toilet and pain.

"Because of the lack of understanding and sheer embarrassment of my condition, and prolonged periods of absence due to the illness, I left school with no qualifications."

"It wasn't until I was diagnosed years later with Crohn's Disease and underwent surgery - an ileostomy - that I was able to return to study, go to night school for four years passing A levels and go to university in later life after raising a family. I am now a fully qualified Occupational Therapist working in the community for Rookwood Hospital part of Cardiff and Vale NHS Trust.

"When I was at school, from the late 1950's onwards, little was known about the condition now understood to be Crohn's Disease. As my condition involved up to 30 visits to the toilet a day, teachers and even my GP at the time, put it down to a nervous temperament." Years of frustration followed until Brenda was diagnosed with Crohn's Disease and opted when the symptoms of diarrhoea and pain became virtually constant to undergo an ileostomy at the age of 40 years old.

Part of the large intestine is removed and an opening (stoma), is formed from the small intestine through the abdominal wall which is then fitted with a bag to collect waste. Brenda said:

"Fortunately medical understanding and healthcare provision for Crohn's Disease and indeed Inflammatory Bowel Disease (IBD) in general has moved on considerably. Organisations such as the Ileostomy and internal Pouch Group offer support to those who have undergone or are about to undergo surgery.

"The before and aftercare delivered to people in the community or at hospitals via specialist stoma care nurses has improved vastly over the years.

"Companies such as Fittleworth (which provides a service delivering stoma care products to those who have undergone surgery and other stoma related needs) work hand in hand with the NHS providing additional support for IBD sufferers in the form of specialist stoma nurses who can advise those who opt for surgery in the lead up and immediate aftermath of the operation.

"Not all people suffer symptoms acute enough to justify surgery. Having part of your body removed is always going to be quite drastic and the objective of the ongoing research is to ultimately enable more people to manage the condition without surgery and find a cure."

As well as being an Occupational Therapist Brenda is Chairperson and Secretary of the South Wales Ileostomy and Pouch Group. She said: "As an organisation we support people who are facing the prospect of surgery and in the early days following surgery, we promote awareness generally of what an ileostomy is. I have been freed from the more chronic Crohn's Disease symptoms but I have a pouch attached to my body that needs to be considered.

"We often get enquiries from people wanting to travel abroad and before the increase of security measures at airports following 9/11 we were able to provide them with a certificate which meant they didn't have to go through the embarrassment of having their luggage searched and stoma products being produced.

"That is now no longer possible but Fittleworth provide an international service which means stoma products can be delivered and visits from stomacare specialists arranged abroad using international partner companies through Fittleworth's World Assist Alliance service.

"Bowel matters or continence matters are becoming more acceptable topics to discuss openly and in the press. To assist in this process for the last five years the South Wales IA branch has sponsored an award for the medical student with the best gastroentrology exam results and it has been very successful in promoting awareness and establishing links with the college of medicine in Cardiff.

"We recognise care and the work that the IA does is changing with the advent of the internet people are becoming better informed. The IA also has a "Young IA" group that provides support, social opportunities and networking for younger members who are due to or have undergone an ileostomy or related surgery".

The NHS is working with the private sector, companies such as Fittleworth that supports specialist nurses across North East to provide continuing care and products for patients.

http://www.fittleworth.net/

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