Crohn’s disease – my diagnosis

Crohn’s disease. I wouldn’t wish it upon my worst enemy. When thinking about what to include in this blog (long runs provide a good opportunity for this), memories that I had obviously filed in the “painful – do not retrieve” folder of my brain kept coming back. Some made me wince and think “gosh, that was awful”. However at the time I just dealt with it and got on with things, because to me that was the only option.

I will come back to this in a later post, but one of the effects of having a chronic disease, when you are ill for year after year (15 years which should have been the prime of my life), is that feeling absolutely rubbish becomes the norm and so you forget what it feels like to be well. Your life becomes redefined by this, and your experiences, thoughts and decisions are made in light of it (though at the risk of becoming too philosophical about this, of course anyone’s life is defined by their circumstances).

So, Crohn’s disease. It’s an inflammatory bowel disease (IBD) which, unlike ulcerative colitis that only affects the colon, can affect the whole of the digestive tract, but most commonly affects the intestines. In the western world it affects 1 in just over 300 people and often develops in the teens or twenties. There is no clear cause (there are thought to be a combination of genetic and environmental factors) or known cure.

My Crohn’s disease has always been confined to my colon and downstream (which will have a silver lining when it comes to surgery, but you will have to wait a few blog posts to hear about that). The inflammation (owing to an abnormal reaction from the immune system) of the gut lining typically causes diarrhoea, bleeding and then weight loss owing to not being able to absorb sufficient nutrients. As there is not a known cause or cure, treatment is by a variety of drugs of varying potency and effectiveness, as well as surgery when therapeutic treatment no longer works.

It was the spring of 1996. I was a skinny 15 year old who was rarely ill (I went for years without a day off school), was good at maths and cross country, and enjoyed playing my trumpet in the school orchestra and singing in the school choir. At a comprehensive in inner city Manchester it was probably unsurprising that I was labelled a swot, not that it particularly bothered me. That Easter I went on our school’s music tour to Dublin. I remember a few things about what we did (I think we gave a concert in St Patrick’s cathedral, went round the Guinness brewery (the teachers drank all the free beer at the end!) and Dublin Castle), but mostly I remember feeling ill and exhausted for a lot of the time, with frequent diarrhoea. A close friend later confided that she knew something wasn’t right with me, but didn’t know what to say.

Multiple trips to the doctor (involving multiple blood, urine and stool samples) on the return home only seemed to rule out a variety of illnesses. I remember vividly sitting in the GP’s surgery with Mum and Dad, and being told that I didn’t have leukaemia (we hadn’t even considered that it might be anything as serious as that). However it was still a worry that they didn’t know what I had and I wasn’t getting any better. The best the doctor could offer me was loperamide – which had no effect for me – to try to slow the diarrhoea. I was exhausted, falling asleep in lessons at school – for some reason often in German, and would then fall asleep as soon as I got home. I was also losing the little weight I had to lose. This went on for a couple of months with several return visits to the GP. Personally, I don’t remember being particularly worried (though the leukaemia announcement made me sit up and think), but I’m sure Mum and Dad were (they have always been very good at keeping their fears from me).

Eventually I was referred to the gastroenterologist at the hospital and received an appointment for a colonoscopy (these would subsequently prove to be the source of many of my (literally) gut wrenching memories). On that morning (it was on or very close to Mum’s birthday in May), I went into school (I still hadn’t had any time off school – I think the teachers were turning a blind eye to me falling asleep in lessons) and my form teacher told me she thought my illness might be Crohn’s disease (quite how she knew and my GP didn’t!?). This was the first time I’d heard of it. That afternoon I went into hospital for the colonoscopy.

Biopsies taken during the colonoscopy led to a diagnosis of Crohn’s disease (they look at the pathology of the inflammation in the wall of the intestine), explained to me by a very friendly Egyptian doctor. I spent two weeks in the Duchess of York children’s hospital (which has now been knocked down and turned into flats) on a high dose of anti-inflammatory steroids. I was fortunate to have my own room and was visited by a series of friends and family, which was very welcome to break up the tedium of having not much to do other than being fed drugs and food by nurses who poked me every few hours to take observations. If you ever have friends or family in hospital, please make the effort to visit them. Over the years it has really helped to lift my spirits (even if I wasn’t always able to express my thanks through a post-anaesthetic haze).

Although I spent plenty of time asleep in hospital, I managed to do a maths GCSE past paper (an attempt at revision for the exam that I was taking a year early a few weeks later) but opted not to do the end of year exam my RE teacher had sent to me (not least because I didn’t particularly see eye to eye with her, something that wasn’t helped the next year by my little sister Emily being her teacher’s pet). Being in the days before having internet access at one’s fingertips, I read through the various leaflets I had been given about Crohn’s disease, soaking up as much information as I could, but not quite realising the impact that this was going to have on my life.

Once discharged from hospital, I returned to school straight away, though with dispensation to leave early if I felt tired, which I think I only made use of a couple of times. Shortly afterwards I took my maths GCSE exam (I ended up getting an A*, which to this day is still one of my proudest academic achievements) but I it took rather a bit longer to run cross country again…

Mark

Training for this week: 4 runs totalling 44 km. One fewer run than last week (I’ve been having a little bit of tenderness in my left knee after runs, so I strapped it for Friday and Saturday’s runs, and didn’t run today, as a precaution) but I swam 1800 m on Thursday.

Monday: 10.1 km in 48 minutes

Wednesday: 9 km in 40 minutes

Friday: 11.2 km in 50 minutes

Saturday: 13.7 km in 65 minutes

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