Crohn's disease, a chronic inflammation of the gut, causes a range of distressing symptoms. The pain was so intense that Mrs Curtis still describes it as being 'like someone grabbing a handful of your intestines and giving them a twist'. But after two decades, help from a new clinic which focused attention on her diet for the first time has produced an extraordinary improvement in her health.
Crohn's disease has affected Mrs Curtis's life in many dramatic and painful ways. She was forced her to give up her dream of becoming a district nurse just months after she began her training. Then, after a troubled pregnancy, the illness prevented her from spending time with her only child, Tamara, who died from a cot death.
In 1982 she became so ill that she was given last rites. The disease prevented her from working and meant she spent months of her life in and out of hospital.
Most of her small intestine has been removed in numerous operations - just 5 1/2 of around 29 feet remain. In the end it became too much for her husband. After 14 years, their marriage broke up in 1990. It was, she says, one of the lowest points in her life, and again her Crohn's struck with a vengeance. Her weight dropped to 45kg (7 st). 'I went downhill much quicker than before,' she recalls.
However, that period, awful as it was, proved to be a turning point. Today she is positive about the future, largely because she feels so well. She has taken a part-time job in an estate agent's office near her home in Kintbury, Berkshire, and has started a word-processing course. For the first time in years she is free of the pain and the debilitating lethargy of Crohn's. After all the drug treatment and surgery she says that nutritional therapy, which 'rested' her intestines and helped her to gain weight, has also helped her to regain her quality of life.
As a teenager, Mrs Curtis was picky about her food, constantly arguing with her mother who worried about her 'skinny, pipe-cleaner' of a daughter, but never had any digestive problems. Then she started suffering severe abdominal pain; she could neither sleep nor eat and had frequent bouts of diarrhoea. She carried on working as a student nurse until the day she realised that she could gladly have thrown one particular patient out of bed and taken her place.
'I had begun to accept that how I was feeling was not normal. This patient had colitis (another inflammatory bowel disease). I realised that was what I'd been experiencing.'
It was the beginning of periods of relative health interspersed with spasms of severe pain, bloating, fever and diarrhoea. Even when she was feeling well, the embarrassing nature of her illness would make itself felt. 'I would spend most of my time running to the loo. And there were the most enormous grumbles, rumbles and tinkles from my abdomen, which always happened at the quietest moments.
'When the intestines become inflamed they stick together; the noises are the food pushing its way through. It was OK when I was with friends, but I never found a way of explaining it to strangers.' She developed tricks to deflect embarrassment. After a particularly loud 'gurgle' she would pointedly look around the room as if to say: 'Who could that possibly be?'
In September 1990 she was admitted to the Royal London Hospital and referred by her gastro-enterologist to Dr Jeremy Powell-Tuck, a consultant who has set up a specialist nutrition clinic.
At this NHS centre doctors, dietitians, a specialist nurse and a counsellor treat chronically ill patients who have been referred because they are undernourished. Mrs Curtis and other low-weight patients have their malnutrition as aggressively treated as the illnesses from which they suffer.
The medical approach to nutrition is still in its infancy and there are only a handful of similar clinics in Britain. 'Under-nutrition tends to get ignored or missed; on the other hand it can be jolly difficult to spot,' says Dr Powell-Tuck. 'There is a tendency not to take a nutritional history and not to know when weight loss is abnormal. What we try to do, after assessing patients and their eating habits and screening them for vitamin deficiencies, is to take a pretty active approach in getting them to gain weight.'
Dr Powell-Tuck sees patients suffering from disorders which prevent them eating, swallowing or absorbing food properly. They include people with motor neurone disease, stroke and cancers, as well as inflammatory bowel diseases.
Initial results from the clinic are very positive. According to a pilot study presented recently at a meeting of the British Society of Gastroenterology, more than half of the patients gained weight and reported 'significant improvements' in their energy levels, emotional reactions, sleep and social and sex lives. They were treated nutritionally in a variety of ways. Some ate dietary supplements including vitamins and minerals; others had enteral tube or gastrostomy feeding, in which liquid nutrients are passed directly to the stomach by a tube. A small number were fed at home by nutrients being infused directly into the veins.
Dr Powell-Tuck remembers seeing Mrs Curtis for the first time at the Royal London. 'She was very thin, very under-nourished and very miserable, taking large doses of steroids. She really did not want another operation, so we thought we'd give her a go.' They tried an elemental diet first; originally developed for the American Space programme, it consists of amino acids, sugar and vitamins, with no fibre or residues that would put demands on her intestines. It tasted so foul that the astronauts could not stomach it - and neither could Mrs Curtis. 'It is gruesome in the extreme. Eventually I only had to put some in a glass or open the fridge and see it there and I'd be straight to the bathroom.'
The next move was a gastrostomy, and apart from 'the frustration of seeing other people eat or smell toast and bacon,' Mrs Curtis coped and began to gain weight. After 10 weeks she was allowed to reintroduce some foods, starting with chicken, then dairy produce. When pickled onions proved no problem, she knew that she was getting better, and by March 1992 she was more or less back on a full diet and the gastrostomy tube was removed. She is now at her heaviest weight ever - 8st 6lbs. 'I can't remember feeling so well for so long, and the best thing of all is this wonderful, wonderful energy.'
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