A big decision to make

Surgery. It was a concept that terrified me. Not because I was squeamish – far from it; I generally liked to watch all the various invasive procedures I had done to me and was not afraid of pain.

It was because of the permanency – having my body carved up such that it would never be the same again. Also, having always read voraciously about everything to do with Crohn’s disease, I had come across plenty of stories about when surgery had not worked. I had read very few success stories (though my prejudice towards surgery may well have meant I ignored these subconsciously). Finally there was the stigma of a stoma – something that only old people had and which limited your life significantly. As you will see, most of what I have just written is absolute rubbish!

Despite all of these fears towards surgery, my Crohn’s disease was deteriorating and I was rapidly being backed into a corner. As I discussed last week, after a few years of working relatively well, the alternative monoclonal antibody drug adalimumab was losing its efficacy for me (after the initial infliximab had failed similarly) and there were no realistically effective treatments left available for me (in the last ten years some additional such drugs have come to market). I therefore opted to go on a trial of a very early stage therapy, which had been suggested to me by one of the research doctors at the hospital.

I have always been very supportive of research (as a former research scientist myself) and particularly of research into new treatments. For many years Crohn’s disease has not been a particularly well understood disease (e.g. there is not a clear cause and no cure), particularly given the number of people who have the disease (approximately 1 in every 300 people in the western world). Some of this may be down to the lack of investment in a not particularly pleasant disease (it isn’t as marketable as something like breast cancer, for example). Thankfully this is now changing owing to advances in research methods (particularly genetic), an increased profile of inflammatory bowel disease and thus more funds being directed to research in this area.

For all of these reasons I was happy to take part in this trial (sacral nerve stimulation), even though the only evidence for its potential success was an initial study in mice which showed that such nerve stimulation appeared to produce an anti-inflammatory response in the mice’s gut. The hope (and it was very much a hope) was that if a similar response could be induced in humans, this may be effective in suppressing the inflammation in Crohn’s. The other benefit (which had more conclusive research backing it up) was that it was also used as a treatment for incontinence (the nerve stimulation could cause a more effective response from the anal and rectal sphincters).

The sacral nerve stimulation involved having a thin wire inserted through my back and into the bottom of my spine (under only local anaesthetic) using a very long needle. From here it would stimulate the root of my sacral nerve. To test this, the voltage in the control box (which along with the end of the wire – coiled up so that it would remain in place – was affixed to my lower back with a sheet of adhesive thin film, meaning I couldn’t get this not particularly small area wet for six weeks) was turned up until I could feel both my bottom and big toe buzzing (owing to the bundle of nerves in this region). A very strange feeling.

All well and good, except that it wasn’t. For starters, to monitor my progress I had to have colonoscopies every two weeks for the duration of the six week trial. Having had active Crohn’s disease for over a dozen years, the state of my colon was not great and particularly at the bottom end where my rectum was badly scarred and constricted. Having a large probe inserted into this region under only mild sedation was not pleasant in the slightest. I would dread each event and be literally grasping the side of hospital bed white-knuckled in pain for the duration of the procedure.

There was also the problem of having a rather fragile wire affixed to my back for six weeks, which needed to stay positioned accurately at the base of my spine. A couple of times it felt like the wire had come out (I was no longer feeling the buzzing when I turned the voltage up) but fortunately the nurse was able to fiddle around with the wire and sort it out. In retrospect it may have been better if it had stopped working completely and I had ended the trial early!

I endured the six weeks and there was absolutely no indication that it had had any beneficial effect for me. To say this was depressing was an understatement. I had gone through six weeks (and four colonoscopies) of a thoroughly unpleasant experience and there were seemingly no positives to take from it. I even struggled to rationalise the altruistic side of the trial. To my knowledge sacral nerve stimulation has not shown to be a useful therapy for Crohn’s disease, though I accept that negative results are still useful in research.

Through all of the years with my Crohn’s I had been determined not to let it affect my life and the things I wanted to do. I had got through my GCSEs, A-levels and two Oxford degrees successfully, I had climbed over a hundred Munros in Scotland, I had run multiple 10Ks in respectable times, I had rung hundreds of peals often on heavy bells, I had started to learn to ski, and I had started a new job training to be a patent attorney. I wouldn’t let my Crohn’s disease beat me and I was worried that surgery may prevent me doing all these things I loved.

As you can see, I very much enjoyed being busy and achieving things and my bloody mindedness pushed me keep going even when I was seriously ill. However it was all starting to take its toll on my body, both physically and most critically psychologically.

From a physical point of view, there were a number of incidents that started to make me realise I wasn’t invincible. First was while bagging Munros: on a walk up Beinn Liath Mhor and Sgorr Ruadh in the northwest highlands, in the sheeting rain that was coming down all day, even though I was dosed up with codeine (which previously had worked well to keep my diarrhoea in check), I had to dash off to find a discrete place to go to the toilet multiple times during the walk. Not fun in a howling gale at 3000 feet in full waterproofs.

Second was when I cycled the coast to coast (Whitehaven to Sunderland) over three days with my good friend Duncan (big shout out to our mutual friend Stuart for his sherpa duties!). I found it quite a challenge with all the big hills and was utterly exhausted at the end of each day. Looking back now, I’m not quite sure how I managed it, but I’m still pleased to have done it.

Third were a few notable peals: one at Merton College when I called the peal from the 7th and felt drained from start to finish, one at the Bullring on a Sunday afternoon after having slept through my morning alarm because I was so fatigued – I turned down the opportunity to ring the tenor (a surprisingly sensible decision for me!) and just about managed to stand up awake throughout, and a less sensible decision for an OUS peal of RABS at Sep’s in which I was talked into ringing the tenor when I was really quite ill after (perfectly healthy) others had turned it down.

For all of these instances, I wasn’t trying to be brave or a martyr. For me it was getting on with life in the only way I knew how – to carry on as if nothing was wrong. I simply could not face having to give in to my Crohn’s and to sit at home thinking about everyone else having fun, even though clearly some rest would have been good for me and the sensible thing to do.

This leads me onto the psychological side of things, which was to prove to be the tipping point for me in terms of the decision to have surgery. Since I had been diagnosed with Crohn’s as a 15 year old, I had never let it get me down or even think about it in a negative way (“why me?” is an utterly futile question, for example). However nearly 15 years of being chronically ill gradually ground me down. The sacral nerve trial was the final straw. Faced with no genuine therapeutic options left and having gone through a gruelling experience with a wire in my back, was very upsetting.

There were other things which added to this sense of despair: I was also chronically exhausted, having to get up multiple times in the night to go to the toilet. My bosses at work had talked me into deferring my professional exams for a year (this was to be a good decision ultimately, but was frustrating for me at the time when I still wanted to prove that I could do everything despite my clear illness). Claire and I were newly married and had not expected to have to deal with the vows of “in sickness and health” so soon. It wasn’t pleasant for either of us for me to be mildly incontinent such that I soiled clothes and bed sheets regularly, and sweated buckets and vomited through the night when I had my intense fevers. We had envisaged living life as any normal couple in their late twenties would do and were looking forward to starting a family (something that I would not have been able to cope with being so ill). I was also not good at realising the distress it caused Claire to see me go through all of this, but in my head it was me who was suffering, and so it was me who had to go through it and cope with it – I wasn’t good at letting her take some of the burden. I would put on a brave face in public and still go out to do everything that I wanted to do (see above…), but then would come home to collapse and curl up in ball. We needed to find a way out of what were some very dark moments.

At this point, no longer to cope properly with things emotionally, it turned into a relatively straightforward decision for me to have surgery. I had one of my regular outpatient consultations with the doctor who had led the sacral nerve trial. She was quite blunt with me and told me that she could see no other option for me than surgery. I asked her if she would have surgery in my position and she said that she definitely would. I have always been one to trust the judgement of well qualified doctors, so that was good enough for me.

We discussed what surgery might involve and the choice that seemed the most palatable to me was to have a temporary ileostomy (at the time I very much liked the term “temporary” being associated with surgery). This was a relatively minor operation that would involve bringing a loop at the end of my small intestine through my abdominal wall to form a stoma, with my colon being retained inside me. This would result in my stool coming out at the point of my stoma into a bag fixed to my tummy. The hope was that it would give my colon (where all my active disease was located) a chance to have some rest (owing to food no longer passing through it) and hopefully recover such that we could contemplate reversing the ileostomy and plumbing me back together a year or two later if all went well.

Decision made! It was such a relief. Although I had effectively been forced into this decision through lack of alternatives, I finally had something to look forward to (though the NHS being the NHS I had to wait several months for a free slot to have my operation). Should I have made this decision earlier? Possibly yes, but I needed to get to this point psychologically (even though it was deeply upsetting), so that I knew it was the right decision and I wouldn’t have regrets about not exhausting the therapeutic options.

I had also met a couple of people who had had stoma surgery recently (including one who was able to go wild camping for days at a time with his stoma), who told me it was the best decision they had ever made. I also read about someone who had been able to ski after having similar surgery. I hoped that it was going to work as well for me – I would love more than anything to be able to go walking in Scotland and skiing without any worries.

Mark

Marathon training continues to go well: four runs with a total distance of 64.5 km. Another good long run on Saturday – 17 miles which feels like it’s getting serious (my first run over 2 hours this year) – which Steve and I ran 23s/km faster than the corresponding run last year, so very encouraging (is the 3 hour marathon on…?!).

Monday: 13.6 km in 61 minutes

Wednesday: 15.2 km in 65 minutes

Thursday: 8.4 km in 42 minutes (hill reps)

Saturday: 27.2 km in 2 hours 1 minute

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