On return to Oxford from Hamburg in December 2005 there was much to do: a thesis to write, a wedding to organise and my Crohn’s treatment to review with Prof Jewell (for the middle of these, Claire was far more involved in than I!).
Although in Hamburg I had been receiving infliximab regularly and on demand, I had reached the maximum 8-week frequency limit between infusions, with the balance tipping towards me being ill for more time than well during this period. I would get towards the end of each set of 8 weeks hanging on for the next infusion and becoming really quite ill – utterly fatigued, in pain most of the time and in little control of my bowels (it had got to the stage that I was prescribed codeine to try to slow things down). The day of an infusion would come with huge relief; I relished the pain of the cannula being inserted into a vein and the coolness of the drug coursing up my arm, in the knowledge that I would soon be better. It was also nice just to have a couple of hours sat down in hospital resting – I often had a little doze!
It was therefore very welcome when Prof Jewell suggested that I try a new monoclonal antibody (i.e. of the same type as infliximab). This was to be adalimumab (brand name Humira) one of the biggest selling drugs worldwide (mainly owing to its use for rheumatoid arthritis). The hope was that although it was clear that infliximab had lost efficacy for me, adalimumab would treat my Crohn’s effectively. A benefit of adalimumab was that it was taken every two weeks, thereby hopefully putting me on a more even keel without having to suffer the deep lows before an infliximab infusion. Another was that adalimumab was delivered as a sub-cutaneous injection that could be self-administered at home, thus not requiring a visit to hospital for a few hours every 8 weeks. While being able to inject myself was a good thing, this was a slightly terrifying procedure involving a very large needle triggered by an even bigger spring that simultaneously fired the needle and delivered the drug.
For a period of time adalimumab worked really well and I enjoyed some welcome respite from my symptoms. However over time, like infliximab, adalimumab started to lose its efficacy and my symptoms returned. Being chronically ill for over ten years was starting to take its toll on my body.
As I have mentioned previously, although Crohn’s disease can affect any part of the digestive tract, my disease has/was always been restricted to my large intestine (colon) and downstream (rectum and anus). The inflammation, which was often severe and deep in the tissue of my gut to the point of causing bleeding, was starting to cause scarring. This caused my rectum and anus to narrow such that it became difficult and painful to pass stools (even when they were loose), and gave me less control over them. Often I would have very little warning of needing to go to the toilet, such that it was a case of rushing to the nearest facility, whipping down my trousers and trying not to make a mess. As you can imagine, this did not always go to plan and so on countless times I had a sloppy, smelly mess to clear up. Although utterly humiliating it was just another thing that I got used to living with. Such a clean-up operation was particularly unpleasant when it was in a pub toilet that had not been used kindly by the previous occupant and the toilet paper had all run out leaving only the cardboard roll to tear up…
The pain of going to the toilet (and sometimes just generally) was really quite intense. Because of the narrowing and scarring I had, a visit to the toilet was often a long and drawn out process; thinking I had finished and then there was more to come. The pain would come in waves and wash over me in a quite indescribable way – it wasn’t just the pain of where my Crohn’s was active, it was a whole body experience that throbbed particularly in my head.
Another problem was that I was also regularly becoming unwell with other minor ailments. Although infliximab and adalimumab were relatively new drugs, initial studies had shown that their effectiveness may be improved by combining them with the taking of an immunosuppressant (e.g. azathioprine, that I had already been taking for a number of years). Not being particularly well nourished (owing to not being able to absorb sufficient nutrients through my inflamed and fast acting insides) and having a depressed immune system meant that I caught coughs and colds, and other bugs more easily and frequently. I would often go through each winter with a cough on my chest that I couldn’t shift.
One of the worst illnesses I had was a recurrent fever. One of the first (but thankfully milder) instances of this was on our wedding day. It was a brilliant day in so many ways (Claire did a wonderful job organising everything superbly well) but I had a temperature and a cracking headache throughout. With time these fevers got worse and more frequent. They would start with a raised temperature that soon became debilitating and led me to shiver uncontrollably. It would often result in me vomiting (although this was a low point it was generally the start of things looking up) and would always finish with my sweating the fever out with such vigour that I became utterly drenched. It was thoroughly unpleasant.
At the time, there did not appear to be an available therapeutic alternative to infliximab or adalimumab for me, so with my doctors we started looking for other things that might work for me. Surgery was was in the back of my mind, though it was something that I saw as a complete last resort and didn’t want to contemplate before I had exhausted all other options. Surgery also wasn’t something that I really discussed with Prof Jewell or the other doctors that I saw subsequent to his retirement; I think we were all singing from the same hymn sheet. So first I would go through what turned out to be a quite horrific trial…
Another good week’s training: four runs with a total distance of 57.5 km and a HIIT session on Friday. My long run on Saturday was particularly pleasing: I ran a total of 24 km with the last 9 km at sub-3 hour marathon pace.
Monday: 9.6 km in 44 minutes
Wednesday: 13 km in 60 minutes
Thursday: 10.9 km in 50 minutes
Saturday: 24 km in 1 hour 51 minutes