Crohn's disease: 'I won't let this illness control me'

Looking in the mirror, it was clear there was something very wrong. My face was gaunt and pale and my hair was brittle and my skin flaky. I had been losing weight steadily for the past year. By then I weighed just over seven stone and had lost my appetite completely. My stomach hurt all the time and all I wanted to do was sleep. As a 16-year-old girl, this change to my appearance was unbearable.

My ambition at the time was to become a dancer but I was soon too tired to keep up with the daily training and gradually I let my practice time slide, unable to do anything after a long day at school but curl up and go to sleep. And it was difficult to hear my friends whispering behind my back; discussing their own diagnosis of my anorexia. I wasn't starving myself. It just hurt too much when I tried to eat and meals were always followed by bouts of diarrhoea which was excruciatingly embarrassing if it happened in school. My friends were going out, meeting new people and having their first boyfriends but I was too exhausted, depressed and self-conscious to join them. At an age when I should have been enjoying life I just felt drained of energy and was in continual and unexplainable pain and discomfort.

Along with the suspicion of starving myself, my symptoms had been put down to growing pains and stress, but the effect on my appearance was more like those of drug addiction as my weight continued to plummet. It was not until I had a series of fainting fits at school that I was finally referred to a hospital for proper tests. I remember the consultant looked very serious when he gave me my diagnosis. The abdominal pain, the fever, the bleeding, the weight loss and exhaustion meant that I had Crohn's disease. I stopped listening.

"What is it?" I finally asked. I had never heard of it and was later to discover that few people at the time knew much about it. It was a disease more commonly diagnosed in older people, but there had been a gradual increase in the number of young people developing the illness.

"It's a chronic disease - that means it can't be cured; at least not today, but great strides are being made in drug research..."

I left the consultant's room with a few information leaflets in my hand. It's a strange thing to say but I remember feeling relief as I left the hospital. All these symptoms had a name; at last I knew what was happening to me.

My mum was waiting anxiously.

"So, what were the results?"

This was the first time I had to take ownership of this disease; it was part of me whether I wanted it or not. And the disease was incurable, it was mine forever.

My initial relief was soon replaced by anxiety when the letter arrived informing me of my first operation to remove a section of my damaged intestines. Crohn's disease can affect any part of the intestine but is most commonly found in the ileum - the section of the bowel where the small and large intestines join. Inflammation and ulceration occurs, causing the intestinal wall to become swollen. The result is abdominal pain, narrowing of the bowel (stricture), loss of appetite, diarrhoea and fatigue; all symptoms I had been experiencing for at least a year prior to my diagnosis. But in the end I welcomed the operation; anything to avoid having to use a colostomy bag - which had become my worst fear - along with the knowledge that as a sufferer of Crohn's disease I had an increased risk of developing bowel cancer. All these possibilities were far more frightening to me than the surgery I faced.

Other treatments included a long course of steroids. These came with potential risks, such as osteoporosis, and they also caused acne and sudden weight gain, particularly in my face. I dreaded seeing even close school friends and spent most of my free time at home. It is a terrible thing to have no control over your own body.

I had a name for my illness but things weren't getting any better. I became very depressed and at one stage I could hardly bear to look at my reflection because all I could see was a round moon-like face, red with acne and flaky with psoriasis. I now know this was more than simple vanity, but some form of body dysmorphia. Friends and family never saw me in this way, but when you feel ill every day for years, it affects your perception of yourself.

For years I was overwhelmed by the disease; and not only by the symptoms and other complications such as anaemia, arthritis in my spine and pelvis, and persistent, sore mouth ulcers. My relationship with my own body was so negative I felt I would never have the ability to achieve anything. I was devastated when I had to face the reality that I would never have the good health and fitness to pursue my ambitions to dance. It seemed as though there would be nothing ahead for me except sickness and exhaustion.

I have wonderful help from my doctors. I was transferred to an amazing consultant who seemed to understand and allay all my worries and concerns. I also began three-monthly injections of B vitamins and iron which my intestine could not absorb naturally from food, but as Crohn's is a chronic illness, it continued to affect me. Regular flare-ups of the severest symptoms continued and my depression about my own body persisted.

After many years wanting to work in a creative arts role I was finally offered a job in a London theatre. I loved the job and wanted to succeed. It was then that I made the decision to take back control of my body instead of just giving in to the disease and allowing it to command my life.

I had read about many theories concerning what causes the on-set of the disease, from the MMR vaccine to mycobacterium in water, but none had been proven. One consistent finding, however, was that it seems to affect far more people in countries with a Western culture, so diet and lifestyle may contribute. It was not until years later that I learnt about food intolerances and that even so-called "healthy" foods can cause aggravation.

The more I learnt, the more I set about trying to claw back control over my body. Through a process of trial and error I was able to identify foods I could digest normally and those that caused my symptoms to worsen. Like many sufferers, I found that dairy products, meat and sugar did not suit me. I developed a personalised eating plan and chose food very carefully, preferring to opt for fresh, organic food. Although I am not aware of any medical advice that suggests organic food is better for somebody with Crohn's disease, I believe it is logical that when you have been taking medication regularly for a prolonged period of time, the fewer chemicals you add to the cocktail the better.

Stress is also known to be a contributing factor in Inflammatory Bowel Disease so getting enough rest and making an effort to relax is vital. I attended yoga classes and found that a programme of regular exercise helped me to relax, feel stronger and gave me a sense of control over my body. I even took dance classes again.

I used to have a box of tablets prescribed by my doctor. I hated the daily routine of popping them out of their blister packets and having to swallow one after another morning and night. They were supposed to be making me well but they came with so many side effects. Nearly 15 years after my initial diagnosis I decided it was time to stop taking prescribed medication. I was in a period of remission and I was feeling much stronger because of my diet and exercise programme, so I made the slightly crazy decision to go drug-free. Initially I saw it as a trial, but the trial has been going on for over a year and, fingers crossed, I've controlled my symptoms through other means. I believe that good health is something I can make steps to achieve, rather than accepting the diagnosis as a closed door.

Crohn's has slowed me down a little. At times I have felt it has held me back. But I did work as a choreographer and in the theatre industry, and I am now in the final stages of my Masters degree in creative writing. I know this period of remission may not last forever and that until a cure is discovered Crohn's disease will continue to be a part of my life. But I know too that there are things I can do to stop it controlling me and that I can live my life as I want to.

What is Crohn's?

* Crohn's disease is an inflammation of the gut whose cause is thought to be the over-reaction of the immune system

* Diets high in sweet, fatty and refined foods are thought to play a part

* An inflamed gut may cause pain, discomfort, nausea, bloating and diarrhoea

* Treatment is normally with steroids to reduce the inflammation and control the symptoms

* An inflamed gut may reduce appetite and make it difficult to absorb food

* Doctors recommend sufferers eat small meals, and eat often, to reduce irritation to the lining of the gut

* If nutrients are not being properly absorbed there may be a need for high energy foods and drinks

* Fish oils are thought to reduce inflammation and improve recovery from the disease

* Patients may eat a vegetarian diet but need to take extra care that it provides sufficient nutrients

* In extreme cases, patients may need to stop eating to rest the gut and be fed directly via a vein into the blood

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