Category Archives: Crohn’s disease

Thoughts on Crohn’s disease, from which I have suffered since 1971

Ouch! That hurts. But not as much as it used to . . . | @robertz

In times when hair was abundant


It’s said that time heals or that painful memories grow less painful. 46 years ago, doctors were scratching their heads for five weeks as I was jabbed, x-rayed and subjected to all manner of medical tests, because they couldn’t find out what was wrong with me. (Some of those close to me say they still don’t know!)

It turned out that as a 12-year-old I was suffering from Crohn’s disease, but this was uncommon in children at the time and it was only when my paeditrician passed my files to the then UK’s leading expert on bowel disorders that he immediately identified the cause.

Fast forward 46 years and my vitamin B12 injection was due today. After a successful operation when I was 13, I have been relatively well, except I no longer absorb B12 from my food and need regular injections. All these years later, I still don’t like needles and don’t even look at them.

During my original stay in hospital, there was a very gentle South African doctor on the ward, who was very good at treating children. I was a good patient because I understood that they were trying to help me and stayed calm, but this didn’t stop the discomfort. The memory of this doctor has come back to me today, because of my injection, but I can’t remember his name. What he did suggest was gritting my teeth when having an injection or having blood drawn, because this focused my attention away from the needle and any pain. I have done this for years and it seemed to work.

I think I do this unconsciously now, although I’m not sure if the pain of injections is as great or whether I am getting used to them at last.

It’s strange how something brings back memories as though they took place yesterday and how our perspective changes. Do we change or do our memories? Is time playing with us?

Posted in a musing, Crohn's disease.

Finding life in facing death

It’s the time of year when plants are dying or bedding down for the winter. It’s all part of the cycle of death and life, and it touches us all. It makes me think of when I was first confronted with thinking about death.

When I was 13, Crohn’s disease, with which I had been diagnosed the previous year, returned with a vengeance and my consultant decided it was best for me to have an operation to remove part of my gut. I was terrified. I wanted to put the operation off for a few weeks, but he strongly advised scheduling it for the next week.

At 13, I was already an advanced worrier. Perhaps because my first year at senior school, which had started so well, had been blighted by frequent absences, including a five-week hospital stay, I tended to look on the bleak side of things. What if I never woke up from the operation? What about all my dreams and ambitions? I felt it was too early to leave.

What’s more, I was worried about what death would mean. While my Mum had been confirmed in the Church of England and my Dad had been brought up as a Jew in Berlin, my parents chose not to bring us up in any religion. Of course, in those days, school assemblies included talks about the Bible and singing hymns, and I was interested in Christianity and religion.

I was fortunate to be able to talk about my fears to my Mum and I told her that I was worried that I had not been Christened. My Mum said we could arrange it before the operation, if I wanted. I said that I wasn’t certain. I didn’t think it right to be Christened as an insurance policy if I didn’t fully believe. In the event, I decided not to and that I would rely on my personal faith.

The operation was successful, although excruciatingly painful and, while I didn’t realise this for years, caused me recurring depression. Thanks to my family and friends, I had wonderful support, but even they didn’t realise how much this affected me.

And so I carried on through life until I faced a similar situation at the age of 50 when one Friday morning I woke up with terrible stomach cramp. The pain increased through the day and luckily Mrs Z made me go to the doctor by driving me there and, after he referred me as an emergency case, drove me to hospital where I was admitted. The following 36 hours were a blur of pain as various tests were carried out, but on the Sunday morning I was told by a doctor they were going to operate immediately to find out what was wrong.

I felt like that 13-year-old again, but now I had no one with me. All I could do was phone Mrs Z for a brief chat, but had no chance to see her or contact any other family. I was totally unprepared and this time it really did look ominous, but still I did not feel it was time leave as I had much I needed to do. Within half an hour I was down in theatre.

Again, I came through it. Good old Crohn’s disease had played its part once more with scar tissue from that previous operation causing my gut to twist with dangerous results. As soon as I was partially conscious, I asked a nurse to phone to tell Mrs Z, who this time nursed me back to health.

And so I carry on, grateful for my life, but, as we grow older, inevitably we become acquainted with death through loss. Losing my Dad suddenly in 1995 hit me hard. In recent years, saying sudden goodbyes to our two ageing cocker spaniels – Felix after having a fit caused by a brain condition and Bosley on the operating table after the discovery of inoperable cancer – was tough.

Sitting with my Mum as she drifted away in hospital over the course of a week in early 2015 was almost surreal. We knew it would happen and I’m glad I was there with her. In fact, during her long illness, I learnt the value of simply being with someone with no external interference, distraction, noise or conversation: just sitting in silence together. I treasure those times.

These experiences and the prospect of death have taught me the value of life and how lucky I am.

I do not fear death as I did when I was 13, although I still don’t feel it is time to leave. I wonder whether I ever will.

Posted in a musing, Crohn's disease.

My life’s essentials 10: breakfast

My life's essentials 10: breakfast

I’ve noticed that food figures a lot in my life’s essentials.

It is, after all, essential to life for us and I think it figures so highly because I’ve had to look at my diet closely because of my Crohn’s disease and also to prevent middle-age spread.

My aim is to achieve a balance of eating healthily while enjoying meals and having the occasional treat.

Take breakfast as an example: I couldn’t get through the day without it and as I eat it after my morning walk, I am usually very hungry.

In the week when I’m working, breakfast is a serving of natural yogurt followed by porridge. It took me a while to develop a taste for porridge, but now I eat it all year round in preference to manufactured cereals. I really enjoy it and know it gives me fuel to get through the day.

On a Sunday it’s time for a treat and that’s when we usually have a cooked breakfast. Our table is laid with cups and saucers, sugar bowl, milk jug and cafetiere. The toast rack makes an appearance along with the butter dish and knife, and the jars of marmalade and homemade jam line up as if on parade, jam spoons at the ready.

Whereas porridge is eaten on the go, our eggs and bacon, chipolata, black pudding, mushrooms, tomato and hash browns, or occasionally fried bread, are savoured leisurely with accompanying music. (Allegro’s Miserere performed by the Sixteen was a favourite of one our spaniels.) This creates the perfect balance to working days.


Posted in Crohn's disease, food & drink, my life's essentials.

Crohn’s disease: turning on to a twisting road in 1972

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.

Posted in Crohn's disease. Tagged with , , , , .
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