Brave Sue lost ten years to disease

FOR ten years, Sue Brixey was unable to leave the house, struck down by the psychological scars of an excruciating bowel condition.

Health reporter JESSICA NICHOLLS reports on Sue's battle with Crohn's Disease, a lifelong and potentially life threatening condition.

SUE Brixey was just 16 years old when she developed severe pains in her stomach and began feeling tired and unwell.

At that time she had little idea how far the illness would develop leaving her as an agoraphobic for ten years, unable to work or even get to the hospital for treatment.

Thankfully, 16 years later, she is getting her life back on track and the future looks a little brighter, but nothing can give her back the many years she lost through an illness she had never even heard of.

Today, conditions like irritable bowel syndrome, inflammatory bowel disease, colitis, Crohn's disease and cancers of the bowel and colon are getting more and more common in everyday vocabulary.

However despite their heightened publicity, the symptoms of these diseases are still highly taboo for many people.

Recently the charity Colon Cancer Concern warned that the cancer was becoming the country's second biggest killer, following only lung cancer, because people were too embarrassed to go and see their doctor.

Crohn's disease is not cancer but its effects can still be devastating for the sufferer as Sue found out.

In the early stages of her illness, Sue said her problems were not too bad.

She said: "It was severe stomach pains, like your bowels are being twisted round.

"I was just generally feeling very ill and very tired.

"But at first it did not really affect me – I went to the doctors, had tests and was diagnosed quite quickly because it can sometimes take a year or so."

Once diagnosed Sue was given tablets, which for a while calmed the condition which is a relapsing one.

She said: "I was well for a while but then I started sixth form and it got worse again and all the symptoms came back.

"I had to leave school because I could not cope with doing my A-levels at that time.

"I was so ill for so long that I developed agoraphobia."

Because of her agoraphobia, Sue gradually lost all her childhood friends who went off to university and was unable to enjoy the years of pubbing, clubbing and generally living the life of other youngsters her age.

Her other symptoms included swollen legs, diarrhoea and stomach pains.

She said: "You worry about it (the condition) every time you go out somewhere.

"Are you going to get the pains? Sometimes they are so severe they nearly knock you out."

Her parents lives were also affected. Sue said: "When I first became agoraphobic I could not be left alone – (my parents) had to work their lives out so there was someone here at all times.

"I used to feel very anxious, even when people came to the door.

"When I went to bed at night I used to think that I would wake up in the morning and be well but it did not happen."

At 18 Sue had to undergo an ileostomy – an operation where the small bowel is brought out and connected to a bag on the outside of the body.

That helped but in 1998 she became very ill. She said: "Because I was agoraphobic I could not go to hospital.

"My doctor treated me as best as he could at home, but then the tablets stopped working, nothing was working anymore.

"I had to see a doctor on call one night because it got so bad and when he examined me he found a lump in my stomach.

"They were not quite sure what it was at first but then they found out that an abscess had formed."

Sue had to undergo another operation where an old scar left by a previous operation had to be opened up again to treat the abscess.

Today, Sue is managing to get her life back on track. She no longer sufferers from agoraphobia and has even taken a huge step by going on a six-week holiday to Poland.

She is now able to work part time for the Cats Protection League and is hoping to carry on her education and do a Biology A-level.

Sue is also secretary of the South Suffolk branch of the National Association for Colitis and Crohn's Disease.

The group was a major support to her and her parents Marlene and Peter.

Sue said: "My parents used to go to the meetings for me because of my agoraphobia.

"Then I started feeling that I could go out and I started to go along as well.

"I decided that I wanted to help them run it and got on to the committee."

The future looks brighter for Sue although she still faces a major operation to make the temporary ileostomy permanent.

She is still intent on raising awareness of the disease that has destroyed some of the best years of her life.

She said: "Crohn's disease is getting more and more common.

"A lot of research is being done and they are looking into the possibility that it is caused by a defective gene and that could make it hereditary.

"There is a lot more awareness of it now – people have heard about it but they had not when I first had it.

"You could talk about any diseases but not about your bowels, especially when I was 16."

As part of the South Suffolk branch of the NACC, Sue is also hoping to set up an information stand at Clinic B at Ipswich Hospital, beginning in September.

FASTFACTS:

Crohn's and ulcerative colitis are chronic conditions that are not infectious.

The most common age for diagnosis is between 15 and 35.

Crohn's disease affects around one in 1,000 people in the UK

The number of people with Crohn's disease has been rising steadily particularly among young people although numbers have stabilised recently.

Pop Star Anastasia suffers from Crohn's disease.

Crohn's can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon. It causes inflammation, deep ulcers and scarring to the wall of the intestine.

Main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and loss of weight.

Fastfact information source – www.nacc.org.uk

WEBLINKS: www.nacc.org.uk

www.ileostomypouch.demon.co.uk

www.ipswichhospital.org.uk