Finally – a treatment that works!

Before I dive into this week’s instalment (life as an undergraduate in Oxford), I need to touch on an incident that I overlooked when writing last week’s post: one of my most eventful holidays that ended up with me in Stornoway hospital…

Following my GCSEs, I celebrated as all normal 16 year-olds do by taking my bike to the Outer Hebrides for three weeks on my own. I took the ferry from Oban to Lochboisdale on South Uist and the plan was to cycle all the way up the islands to Stornoway on Lewis where I would catch the ferry back to Ullapool (a place that has now become one of my all time favourites). It was an amazing time: I stayed mainly in very basic youth hostels and explored the generally deserted and unspoilt landscape, which is quite different to anything on mainland Britain. The beaches in particular were glorious: miles and miles of pristine white sand bordered by turquoise sea – it was almost tropical (apart from the weather!).

Everything went to plan for the first two weeks and I made my way through the Uists with Benbecula in between, onto Berneray (before the causeway was built) where I spent one night seeing that it never really got dark, before crossing to Harris, the most mountainous of the islands. It was here that woe (or ineptidude) befell me. On a tricky descent into Rhenigidale (where I was booked into stay at the hostel) I decided confidently that an upcoming cattle grid would present me with no problems while travelling at what must have been 30 or 40 mph… I was wrong and the cattle grid won. My front wheel buckled, sending me flying through the air and onto the tarmac the other side, a sight (to my fortune) that was viewed by a car full of pensioners enjoying the scenery.

These kind people scraped me and my bike off the tarmac (by which point I was screaming in pain) and into their car, where they gave me a few tissues in a futile attempt to stem the blood pouring from my right knee. They drove me down into the village (just round the next corner) to seek help from the hostel, but no one was there. Fortunately there was someone in at the house next door. This turned out to be my knight in shining armour: Finlay Calder (no, I hadn’t heard of him either at the time, but it turned out that he was a former Scottish rugby captain). He drove me all the way to Stornoway hospital (a not inconsiderate distance) where my knee was patched up (requiring lots of iodine, bits of mangled skin to be cut off and plenty of stitches, sending me into mild shock as I observed this).  The next day he brought my bike and a ferry ticket and helped me onto the ferry back to the mainland, where I was to be met by Dad and Stan “tatty old bugger” Rumney, a good family friend, who drove me all the way back home to Manchester via Grandma and Grandpa’s in Edinburgh for some rest and a redressing of my wounds.

The point of including this episode, is that when I telephoned Mum and Dad to let them know of my misfortune (foolishness), they initially assumed that my Crohn’s disease had flared up and I had been hospitalised as a result, so I think they were mildly relieved to hear that it was just a few (quite bad) cuts and scrapes, many of which I still bear the scars (though they were then possibly rather annoyed that I was now stranded in Stornoway with a broken bike…).

So now, to resume the story of trying to find a treatment for my Crohn’s that both alleviated my symptoms and did not give the potential for nasty side effects (i.e. something that wasn’t steroids, but worked as well). Upon arrival in Oxford in the autumn of 1999 I was referred to the gastro department at the John Radcliffe hospital, under the supervision of Prof Derek Jewell, a world renowned expert in inflammatory bowel disease (IBD). Not only an expert in his field, Prof Jewell has to be one of the kindest and most gentle mannered people I have met, and always had a genuine care and interest in my (and no doubt every other of his patients’) health and well-being.

For the first couple of years or so in Oxford, my treatment carried on as before, in seemingly never ending cycles of steroid treatment, which always resulting in my symptoms flaring up when I was weaned off the steroids. However, in early 2002 I was put on a relatively new drug, infliximab. I was one of the first tranche of patients in Oxford (and possibly the country) to be treated with this drug for Crohn’s disease, which is a monoclonal antibody. The difference with this drug from my previous treatments is that infliximab works by targeting the source of the inflammation (by binding to a protein (TNF-α) involved in the autoimmune reaction that causes the inflammatory symptoms of Crohn’s) and so helps to prevent the inflammation even being caused in the first place.

Infliximab worked very well for me – I felt great after taking it, probably the best I had done since being diagnosed with Crohn’s. Being well and feeling vaguely normal after long periods of illness is a particularly special feeling because you appreciate what most people take for granted so much more. Suddenly I would have loads of energy, a huge appetite and would be able to put on weight again, as well as not have to think constantly about where the nearest toilet was and what my escape route would be.

I enjoy many things in life, but one of the things that gives me great pleasure is my annual walking trip to Scotland with Dad and some other good friends to climb Munros. However, slogging my way up a hillside (sometimes in poor weather) when I was feeling ill and not knowing when I might need to find a discrete spot to drop my trousers (often when it was blowing a hoolie) was sometimes not the most fun (though, as I will discuss below, there was no way I was going to let my Crohn’s stop me doing things like this, however much it hurt me). So come the summer of 2002 on the main ridge of the Black Cuillin on Skye, having just climbed Am Basteir and Bruach na Frithe, flush full of infliximab, I felt invincible, and vividly remember declaring myself so!

Infliximab is given as an intravenous infusion over the course of an hour or two, with the effects of each dose lasting for a number of weeks if not months. I was therefore able to reduce the other drugs I was on and so, for the first time since my diagnosis six years previously, I was free from steroids for prolonged periods of time. Initially, however, owing to the cost of infliximab (each infusion cost approximately £1,000, I think – I have no qualms whatsoever about paying taxes now!), I would be put back on steroids when the effects of the infliximab wore off and then have to demonstrate that I had become ill enough (which was really quite ill) to deserve another infliximab infusion.

Waiting for another infliximab infusion was also coupled with the psychological side of having a chronic illness. As I have alluded to previously, when you are ill for year after year, feeling unwell (absolutely rubbish most of the time) becomes normal and so I forgot what feeling properly well felt like. This meant that the baseline of what I thought was feeling normal was redefined (which is why when I was actually well, e.g. shortly after an infliximab infusion, it felt terrific). Also, throughout my life I have been fortunate to be good at a number of things I have undertaken, sometimes with a rather perfectionist attitude to them (though I hope that this has become more pragmatic with experience) – I don’t like failure and have worked always worked hard to strive for success, so this is engrained into my mindset and approach to life. I therefore took on my Crohn’s with the same attitude. I was determined not to fail, and for some reason failure for me became admitting that I was ill and thus giving in to help (e.g. seeking treatment).

The illogical part of this is that when I did seek help, it was a huge relief because I then knew I was going to get better. This was particularly the case when it became necessary for me to seek help in advance of scheduled hospital appointments, which I often found hard to do. Coupled with the redefined “feeling normal” baseline, this turned into a sort of denial that I was ill (as you have seen, my Crohn’s disease went in cycles of flare ups of ill health). Others around me knew I was ill but I just wanted to get on with things in life as best as I could and almost saw it as a badge of honour that I was soldiering on and not stopping doing any of the things that occupied my time (I have always enjoyed being busy and doing lots of things with my time).

This is the perspective and rationale I have now looking back at those times; at the time it seemed like my only option and the only way I knew how. I therefore needed to come to a realisation that it was time to seek help, which was a mix of relief that I was hopefully going to get better (sometimes only for a short period of time) and also a small amount of feeling that I’d given in to myself. This sense of relief, when looking forward to an infliximab infusion, often seemed to improve my symptoms in the couple of days ahead of the infusion (stress is one of the purported triggers for Crohn’s disease, even though I do not consider myself a particularly stressed person).

One particularly bad episode of trying to hang on for a scheduled hospital appointment was over Christmas and New Year of 2002/2003. My last infliximab infusion had been several months earlier and I had been weaning myself off the latest round of steroids, so I was getting ill again, before Christmas. I had a scheduled hospital appointment with Prof Jewell sometime in January shortly after I returned to Oxford for Hilary term and so I thought I could last until then to discuss a new infliximab infusion. However this was not to be and so on the day that Mum drove me back to Oxford, I arranged to be squeezed into Prof Jewell’s clinic as an emergency (I seem to remember that Mum offered to take me for lunch but I responded by telling her that we needed to go to the hospital instead). Prof Jewell took one look at me and admitted me straight onto the gastro ward where I spent the next week recovering.

As usual, I was very grateful to receive a number of visitors who made the effort to come and see how I was, but also the very welcome decision from Prof Jewell that we should no longer switch between infliximab infusions and steroids. Instead I was just to use the infliximab. For the next few years this was to keep me relatively well, though always with periods between infusions during which my symptoms would flare up.

This therefore gave me the confidence to enter the 2004 Edinburgh marathon, to raise money for the National Association of Crohn’s and Colitis (the name by which Crohn’s and Colitis UK used to be known). Running a marathon had always been an ambition of mine, with just the thought of running with masses of other people giving me goosebumps. However I feared that my Crohn’s disease would not allow me to do this, particularly the long and intense training that is required. I was therefore very excited to have this opportunity.

My training demonstrated to me (possibly not at the time, but looking back) how fragile my body was. Owing to my low weight I didn’t have a huge amount of strength and so the training took its toll on me, along with periods of illness. I had problems with shin splints and tendonitis in my ankles (which were particularly flimsy to start with) which prevented me from training as much as I would have liked (now that I am much fitter, healthier and stronger, I coped with the demands of training last year and this, so far, much better). As a result, the longest I achieved on a training run was a half marathon (last year it was 22 miles) and so went into the marathon not as prepared as I would have liked to have been.

However, I was still reasonably fit and, from what I recall, got to 18 miles in about 2h30 and so was well on track to run under 4 hours (this would have been a great achievement for me). However I then well and truly hit the wall, finding the last 8 miles incredibly tough, which wasn’t helped by most of this being uphill to the finish in Holyrood Park. I staggered home in 4h16, utterly exhausted. I was still very proud to have finished and raised about £1,700, which I was very pleased with.

After the Edinburgh marathon in June, the summer of 2004 also coincided with two of the best things that have happened to me in my life: I got together with Claire and I moved to Hamburg to work towards my DPhil on the ZEUS experiment, from where I will pick up next time…

Mark

Training for this week: 3 runs totalling 26 km and a HIIT session. An intentionally easy week (for “adaptation” according to my training plan) but I had to miss my intended Friday run owing to an unwelcome vomiting bug on Thursday evening, which made the “easy” 8 mile run today a bit harder than it would have been otherwise. However, if any week had to be disrupted like this, this week was probably not a bad one.

Monday: 6.6 km in 33 minutes

Wednesday: 6.6 km in 32 minutes

Sunday: 13 km in 64 minutes

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