суббота, 22 сентября 2012 г.

Health Zone: I haven't eaten a proper meal for years 12; Jill Palmer's medical casebook AGONY OF LIFE WITH RARE ILLNESS.(Features) - The Mirror (London, England)

Byline: Jill Palmer

SALLY Poolman is in constant pain, has to be fed through a tube, and spends much of her life in hospital.

But the 33-year-old refuses to give in to the rare bowel disorder which dominates her life, and is determined to live as full a life as possible.

Sally suffers from the same horrendous condition as Danny Bond, the 20-year-old who earlier this month told doctors he wanted to die because he has suffered enough.

Like Danny she has endured hundreds of operations and has been infected by the antibiotic-resistant superbug MRSA.

But, unlike Danny, she says there is a quality of life even with the debilitating disorder.

'I was very sad when I read about Danny's decision to stop treatment and be allowed to die if he can't be cured,' says Sally from Ringwood, Hants.

'It is an awful condition and I have been through terrible times and real lows just like him.

'But any newly-diagnosed teenager reading his story would feel so negative about their illness. I want to show that life is worth living.'

Sally suffers from autonomic neuropathy of the gut, or chronic pseudo-obstruction. It means that the nerves that control the stomach, intestines and bowel do not work.

The problem started in childhood, but became worse during her teenage years and Sally endured her first bowel operation when she was 16 years old.

When she was 19 and had started her training as a nurse she underwent major surgery to remove her large bowel.

OVER the next two years she had TWELVE more major operations on her remaining intestines.

None was successful. She continued to suffer excruciating pain, her stomach was horrendously swollen, she vomited every time she tried to eat and her weight plummeted.

'It was a nightmare,' says Sally. 'I was continually accused of being anorexic because I wasn't eating. But the reason was not that I didn't want to eat but that eating was so painful.

'My stomach just did not digest the food and every time I ate even the smallest amount I would be doubled up in pain and be violently sick.

'I felt so ill and was in and out of hospital so many times that it took me five years instead of three to qualify as a nurse.'

Eventually Sally became so ill that she was admitted to hospital for intravenous tube feeding which was to become her way of life. She has been unable to eat a proper meal for the last 12 years.

Instead, a special high-calorie feed known as Parenteral Nutrition Solution is fed through a tube into the vena cava, the main vein going into the heart, and around the bloodstream.

A tiny device - the size of a thumbnail - is implanted under her skin just below her right shoulder blade, which is attached to the vena cava.

Each day she must attach the feeding machine into the device, known as a vascuport.

It then takes between ten and 12 hours, usually overnight, for Sally to be 'fed'.

Initially she was kept in hospital for six months but, determined to go home, she learnt how to attach the feeding machine herself.

'Everything has to be completely sterile so that you don't get an infection in the tube which can spread to the bloodstream and be life-threatening,' says Sally. 'It is very difficult. I've lost count of the times I have got an infection and have had to be rushed to hospital critically ill with blood poisoning.'

On top of that, the vascuport is continually going wrong and needs to be replaced.

And Sally is dogged with bowel infections which have damaged her kidneys and bladder as well as spreading into the bloodstream, nearly killing her.

The condition makes her desperately exhausted and incredibly underweight.

She needs pethidine injections up to four times a day to relieve the pain as her body cannot absorb oral painkillers.

She spends three months out of every six in hospital with numerous infections and feeding problems.

Now, because she has been infected with MRSA she has to be in isolation every time she is admitted.

Sally is also facing yet another major operation to remove part of her intestines which are continually becoming infected - but she is determined to lead as independent a life as possible.

She has her own flat - her mum lives nearby to help out when needed - and enjoys a good social life.

And, despite believing she would never find a partner, she^has fallen in love with old schoolfriend Rob Portnal, with whom she now lives. 'There was a time when I thought I could not take it any more. The vascoport had failed for the umpteenth time and I felt that enough was enough,' says Sally.

'But it didn't last long. I soon realised that although my life is restricted and I am limited in what I can do, I can still have a good quality of life.

'I am too outgoing to sit around waiting to die. You can't let the illness rule your whole life.

'I have learnt to manage it as best I can.

IDEALLY I should use the feeding machine seven days a week, but I refuse to do it at weekends because I want to go out and be normal.

'If I do too much I feel awful the next day, but I balance the pros of enjoying myself with the cons of how much I will suffer.

'I meet my friends in the pub and I can go out to restaurants although I can only manage a tiny toddler's size portion, and even then I feel as if I have eaten two three-course meals and I do get pain.

'Not being able to eat and depending on intravenous feeding is probably the most frustrating part of the illness.

'I didn't think I would ever meet anyone who would put up with all my problems, but Rob is fantastic.

'He has even learnt how to give me my pethedine injections and is learning how to attach the feeding machine. I have been offered the chance to go on the bowel transplant waiting list but have decided against it. It is very risky and has a low success rate.

Maybe in the future...

'I have been to hell and back in my life and nearly died so many times.

'Now I just live one day at a time. If I feel well I go out and enjoy myself and make the most of life.'

Sally's consultant Dr Mike Stroud, from the Institute of Human Nutrition at Southampton Hospital, explains: 'This is a very rare gut movement disorder which is at the extreme end of irritable bowel syndrome.

'It is an abnormality of the nerves that control the gut, but we don't know enough about what causes it or how to treat it.

'There are only around 50 people in the country who have it this severely and need to be fed intravenously.

'It seems to come on during teenage years and early adult life.

'It causes terrible problems. Most patients have had several operations before diagnosis which don't help as the gut sticks to the old scar tissue making problems worse.

'Bowel transplants are still very experimental, although this may be an option in the future.'

CAPTION(S):

BATTLER: Sally is determined that her rare bowel disorder won't prevent her leading as full a life as possible