Making the most of being well

After feeling like life was being put on hold while I waited for my first ileostomy operation, looking forward to hopefully getting better, once I had had the surgery and was fully recovered it was great to be back at work and thinking about running and cycling again.

At first, running was hard work – I’d not run for a number of months and had had abdominal surgery in the meantime. Fortunately, my colleague Laura (we’d not yet got Steve into running by then) was patient with me and I slowly managed to increase my stamina. The obvious target was the next Oxford 10k race – the “Town and Gown” in May. My training went reasonably well and I finished in 43:38 – not a PB but a good marker to improve on.

Early in 2011, feeling fit and healthy, I joined a cycling club – Zappi’s – which had been started in Oxford by an ex-professional cyclist, Flavio Zappi. It was such a good feeling to finally have enough energy and be well enough to get up early each Saturday morning to cycle hard for three hours. It was great fun, with great company and great coffee afterwards.

Another huge benefit of having my stoma and no longer being affected by the symptoms of Crohn’s disease that I had been plagued with for many years, in addition to now finally being free from medication for the first time in over 15 years, was that I no longer had to avoid foods and drinks that I had previously eliminated from my diet owing to their deleterious effect on my symptoms. So now, spicy foods, lots of vegetables, tea, coffee, alcohol and much more were all back on the menu! As well as being very satisfying to enjoy all these things again, it was also a relief not to have to think about whether certain foods and drinks were going to cause me problems, and not to have to explain to other people why I wasn’t eating or drinking certain things.

Having a more varied diet, and also insides which don’t want to get rid of things as quickly as possible has both helped me to put on weight and to feel generally more healthy. My skin definitely feels better, though disappointingly it hasn’t stopped my hairline receding – I think I can live with that one.

There was one downside of my surgery, though, which reared its head a few months after my operation. My stoma, which up to this point had been operating well, started to prolapse: essentially my small intestine started falling out of my stoma. It was as unpleasant as it sounds.

When a stoma is formed, it is held in place by the skin at one (the distal) end. The intestine which goes back into the abdomen is then essentially wedged in place by the abdominal muscles (helped by stitches put in place during surgery and possibly by adhesions that form over time). However, if the hole formed for the stoma in the abdominal muscles is too large then the stoma can prolapse such that the end of the intestine protrudes out of the stoma, in my case by about 10-15 cm. If you want a more graphic explanation, YouTube is your friend, but be warned: it isn’t for the faint-hearted…

Needless to say, it was rather distressing seeing my intestine flopping out of my body, particularly at first when I didn’t know what was happening to me. It was also rather painful – imagine your insides being squeezed and twisted inside out. Sometimes pushing the prolapsing intestine back inside me was straightforward but sometimes I needed to lie down and gently massage it back to where it belonged.

Particularly when exercising, I would try to keep my stoma in place with the waistband of my underwear, as it would become rather painful running along, say, with part of my intestine hanging out. However this would then often lead to my stoma bag leaking because the stool got trapped when it tried to come out and would get squeezed under the adhesive flange that sticks my bag to my tummy. A sensible person would possibly stop exercising to avoid such troubles but with my new found energy and enthusiasm for getting fit and taking part in events there was no stopping me.

Getting fit cycling with Zappi’s and running again got me thinking about doing a triathlon, which was one of those things that I dreamt of previously, if only I had been well enough. My colleague Laura had competed in a number of triathlons and gave me some helpful pointers – this sounded like something I could do! All I needed to do now was to resurrect my swimming ability which had lain dormant since I was about 12 when I left my swimming club because I found the training of swimming length after length rather tedious (I now quite enjoy pool swimming – I can think about utterly random things, my stroke or how many lengths I’ve done) and I wasn’t getting picked on the squad for galas.

So I entered the Blenheim Palace triathlon, bought a second hand wetsuit and arranged to go swimming in the River Thames with a fellow bellringer, Henry, as practice – he too was taking part at Blenheim, lived near the river and had some experience of open water swimming (at least more than the zero experience I had). Open water swimming was a revelation – no longer were you confined by the bounds of a swimming pool, and you could look up and see the sky! For many, I appreciate that their kind of fun isn’t swimming in a lake or a river (and I still get a little freaked out if I think that there might be a big fish swimming past!), but I find it so invigorating and liberating to swim in open water. This is a big change from when I was little, when my hardy sisters would spend ages swimming in the sea, lakes and rivers, and I would shiver just paddling.

As I was feeling quite fit by now, I thought why stop there? So as well as the Blenheim triathlon I entered half a dozen runs, cycling sportives and triathlons over the whole of 2012 and turned it into a year of fundraising for the Crohn’s and Colitis UK charity – the same charity that I am raising money for this year in the London marathon.

This is what 2012 looked like for me: I cycled 90 miles in the White Horse sportive in April, I ran the Oxford 10k in May (in a new PB of 41:39), I completed the Blenheim sprint triathlon with my sister Victoria in June (beating Laura in the process, though Steve did this to me the following year!), I swam a mile in Salford Quays in the Great Manchester Swim (again with Victoria) and completed the Bedford (Olympic distance) triathlon in July, I cycled 115 miles in the Zappi’s Gran Fondo sportive and completed the London (Olympic plus distance – including 90 km bike) triathlon in September, and finally ran the Bristol half marathon (my first half) in September.

In total I raised a very pleasing £3,700 for Crohn’s and Colitis UK, a total I would like to get close to raising this year, if possible. As well as being fantastic to have the opportunity to raise some money for a charity that had given me lots of support over the years while being ill, it was just wonderful to have the health to be able to train for and compete in these events.

I only failed to complete one event – the Blenheim 100 mile cycling sportive in August, for which I was not well enough to start, owing to one of my recurrent fevers, which sadly had not stopped since my surgery. The doctors thought it might be a deep seated viral infection in my colon that was difficult to get rid of.

In this period of time (2011-2012) I also revised for, sat and passed my professional exams, and Claire and I had the exciting development that we were expecting twins in November 2012. All of this, and occasions such as the London Olympics (at which Claire volunteered and we went to see a number of events), made 2012 a very special year.

However, as my initial operation was a “temporary” ileostomy, I needed to decide what to do in the long term.  There were risks from leaving my large intestine in situ, notably bowel cancer, which is more prevalent in people with Crohn’s and with it bypassed could not be monitored as easily, i.e. you’re not passing anything through, so can’t see if there is blood being produced or blockages in the colon. A few factors – the fevers included – made this a very easy decision in the end.



Training continues to be intense: four runs with a total distance of 63 km. The effects of the 20 mile run last weekend are taking a while to recover from, so my legs have been rather tired and sore this week, with the 13 mile run yesterday being quite an effort.

Monday: 13.1 km in 57 minutes

Wednesday: 16.4 km in 71 minutes

Thursday: 12.1 km in 51 minutes

Saturday: 21.1 km in 1 hour 36 minutes

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