40 years pass so quickly. I was in the first year of grammar school and thriving on it. I’ve always been keen to learn and the move to senior school set my mind buzzing, although my body was tired. So while I enjoyed English, history, French and other subjects, the exertion of games and PE exhausted me. I remember particularly standing shivering on the icy playing field during one wintry morning’s rugby practice. I also remember falling asleep in a physics lesson and the teacher asking me afterwards if I was all right. I replied that I’d had a late night, but I hadn’t. What I didn’t realise was that I was seriously ill.
I was losing weight and started suffering from diarrhoea. My Mum took me to our doctor, who suggested it was probably due to nerves from changing schools. He gave me a course of vitamin tablets.
I couldn’t swallow pills so I crunched them up every day: they tasted horrible. I got worse, lost weight even faster, and started experiencing stomach pains. My Mum took me back to our doctor. He referred us to the hospital and we went to an outpatients surgery.
They realised immediately how ill I was and admitted me to the children’s medical ward. At the age of 12 my weight plummeted to 3 1/2 stone and I was diagnosed with pernicious anaemia. However, the doctors had no idea what was causing all this.
I spent the whole second half of the summer term in hospital having tests. I was weighed and measured, poked and prodded. I had x-rays, barium meals, drank various liquids, chomped different pills and had a blood transfusion.
I have always been shy, but I was withdrawing into myself. Looking back, I realise that this had started before I was admitted to hospital. I remember an instance when I was in our local butcher’s and the father of a class-mate was being served as I queued. I hid in the queue so he didn’t see me as I didn’t want to say hello. I remember this clearly because even then I couldn’t understand why I was worried about just saying hello. I started avoiding people.
Being examined like an object did not help. I remember a doctor I had never seen before leading a group of medical students into my room and telling them about my anaemia and examining my hands. Each student then examined my hands as if I were a laboratory exhibit. I pretended I wasn’t there.
While the examinations and tests were uncomfortable, the nurses and staff were wonderful. In those days, cleaners cleaned the floors and furniture thoroughly in every room in the ward every day and they would bring me a cup of tea during their tea break. When I did jigsaws, doctors who had nothing to do with my case came in and tried to figure out where pieces went. If I hadn’t been so ill and in pain, this part would have been fun, especially as I was allowed home at weekends.
The doctors still had no idea what was wrong with me. As I understand it, it was only by chance that my paediatrician, a wonderful man called Dr Husband, passed my notes across the desk of an adult specialist, Dr Coghill. Instantly, he saw that I had Crohn’s disease. They hadn’t picked it up because at that time it was very unusual in children. Now it is more common.
Crohn’s disease is an inflammatory bowel disease. It is treatable, but remains with you for life.
The doctors wanted to start treatment at once, but my family had booked a holiday to Burnham-on-Sea. They wanted us to cancel it, but I was desperate to go. I pleaded for us to go as the thought of it had kept me going. We went on holiday, which did me good, and I can’t remember whether I started taking medication immediately or when we returned.
I think it was on our return that I was prescribed a high dose of steroids and had to carry with me at all times a card which detailed my prescription as it could only be increased/reduced gradually and not stopped suddenly. The treatment certainly reduced the symptoms and at last I started to feel better. I also started eating like a horse, hungry as soon as I had eaten a meal. I believe I doubled my weight to 7 stone by September when it was time to go back to school.
That first year of school had been a dream and I was looking forward to picking up where I had left off for the second year.
My class had not seen me for three months when I entered the classroom, eager to catch up with them all. The last time they had seen me I had been a thin, skeletal figure, whereas now I was plump with rounded cheeks. I started talking to my friends enthusiastically, only to find them looking at me in bewilderment. I didn’t realise that they didn’t recognise me until one asked me who I was.
Shocked, I told them it was me. Wasn’t it obvious? But it was hard to convince them.
It was like one of those films where a character is trapped in the body of a stranger or a nightmare in which you have lost your identity and struggle to convince people you are you and not someone else.
Eventually, they believed me and I began to re-establish relationships, but there was more upset to come.
At last I looked forward to a PE lesson as now I had more energy. In new kit I bounded into the gym, but as we used the apparatus I kept on falling over and hurting myself. I believe I had put on so much weight in so few weeks that my centre of gravity had changed without my brain and body having time to adjust. Instead of enjoying feeling healthier, I felt unable to run and jump without falling over.
I went home depressed after that first day as the impact of illness on my life hit me for the first time. My carefree first year at school was now a memory and the challenges I faced we’re now very different.
From now on I would have to fight Crohn’s disease to live my life as I wanted.
How fortunate that doctor finally recognized you had chron’s!
Our family is intolerant of gluten, often linked to IBS and chron’s! More and more docs now recognize the need to get off gluten for many health issues.
My oldest granddaughter, now 13, was 9 when we realized, and is STILL smallest in her class! Our symptoms are more ‘subtle,’ mood, skin, brain fog, weight… but such blessing to know we must avoid it!
Thanks, Nadya. I understand what it’s like.