I’m one of the approx 300,000 people in the UK affected by Inflammatory Bowel Disease ( Crohns and Ulcerative Colitis). Ostensibly this has bugger all to do with cycling. But, actually, it does in my case. It has a lot to do with it.
Surely though, this is a private matter. The subject of bowels, especially malfunctioning ones, is distasteful. Well yes, it is and that means sufferers of bowel disease carry more than just the physical burden of disease. They get to carry the weight of a taboo also. Sometimes that’s the hardest bit. Good enough reason then to use my blog as a platform to help raise awareness of an often hidden and stigmatised group of illnesses.
One day, about 6 years ago, after a hard spell in hospital, I pulled a neglected bike out of the shed and went for a short spin down the road. Along the way is a gentle rise over a railway line. I struggled to make it over the top. I was an exhausted bag of bones. Now, in the first 4 months of 2019 I’ve already completed 70,000 metres of ascent, rode my first ‘everesting‘ and gained entry to the High Rouleurs Society. Fit as a butchers dog (albeit an ageing one). Progress! I can keep going all day on all sorts of terrain.
That first ride was inspired by the desire to rebuild myself after a first admission to hospital with Ulcerative Colitis. I was in a feeble state at the time but it felt like a good thing to do and I enjoyed it. The recent ride was a result of an accumulation of the rides made in the intervening period. Cycling became a foil to my continued struggles with disease, repeating episodes of surgery, recovery and all the problems and setbacks that come with that. Riding my bike became my ‘go to’ recovery tonic and a yardstick by which progress could be measured. It also had become a habit. A good one.
Today, I’m cured of Ulcerative Colitis as I had my colon removed 4 years ago. I lived with an Ileostomy for a couple of years and went on to have surgery to make a J Pouch. It truly is amazing “what they can do” but not as amazing as the job a healthy bowel quietly (mostly!) gets on with. Even though I no longer have Inflammatory Bowel Disease the aftermath of surgery has given me a new set of challenges.
I go to the loo approximately 12 times per day. I have regular bowel leakage. My stool is fiercely acidic as it comes directly from my small intestine so it can burn…..intensely! I dehydrate quickly and have major issues around what and when I eat. On the face of it cycling, particularly long distances, ought to be a challenge too far. But, I’m delighted to say, it isn’t.
First off, there seems to be something happening when I cycle that reduces bowel activity. It may be something to do with the riding position. Perhaps there is a reduction of blood flow to the gut when muscles are working hard which slows gut activity. I don’t know. But, it’s a good thing in that I can sometimes ride for five or six hours without having to stop for a field poo. This, however, is not a strategy to be totally relied upon.
One or two unpleasant experiences have taught me to plan and prepare carefully for days out on the bike. Earlier this year I rode the final 20ish miles of a 105 mile off road adventure standing up. Going out unprepared kit wise and failing to address a butt leak as soon as it happened punished me with an excruciating case of what I call baboon arse. Sitting on it was not an option, at all. By the time I got home I was quite literally whimpering. Idiot!
Therefore, all but the very shortest rides will see me carrying my ‘Field Poo Kit’ : A small pack of wet wipes, uses obvious but important to have the right ones! A couple of ladies sanitary pads, contains leakage. A tube of the very best quality barrier cream, prevents leakage from making a ride an agonising ordeal! For riding in events away from home I’ll have a camping toilet in my van for use before and after.
The Field Poo Kit fits nicely into a backpack pocket or jersey.
Planning and preparation also involves thinking in advance about my diet and how I manage medication to slow my gut. Often that is a process that starts the day before a big ride and helps me time toilet visits to cause minimum disruption. It’s something of an art that I might expand upon in future posts, as I might about other aspects of having a bottom malfunction relevant to life as a cyclist. It’s certainly not all doom and gloom, there’s a rich vein of dark humour lurking in the shorts.
There you go then, I’ll leave you with that enticing prospect. I wouldn’t wish to be defined by my problems but I guess my message is this. Inflammatory Bowel disease doesn’t mean you can’t enjoy yourself and be as active as you wish. Neither is it something to feel ashamed of. In fact it helps you discover who your real friends are.
Shit happens, if it doesn’t kill you there are ways to adapt to it physically, practically and psychologically. The journey makes you wiser and stronger. Ride on through adversity…..or whatever it is YOU do that keeps you healthy and sane and BE PROUD of it.
Update – May 2019:
You can read about my recent Everesting / High Rouleurs Society ride here. It gets pretty descriptive with regard to my bowel problems as they proved to be the most challenging and difficult aspect of that very long ride.
Update – February 2020:
In July 2019 I had surgery to disconnect my JPouch and to form an ileostomy. Simply put, I no longer crap out of my bum. Instead, I crap into a bag on my abdomen. On the face of it this sounds awful….but no, it’s actually a fabulous improvement that has turned my life around – given me order out of chaos.
I waffled for a couple of years about having this surgery, losing ones bum function was a big hurdle to get over mentally despite the misery my JPouch was creating behind the scenes. On reflection, what tipped the balance in favour of returning to an ileostomy was a realisation during my Everesting ride that my life was utterly dysfunctional. I was putting up with a situation that had no hope of improving. From that point forward there has been no looking back with regret…..other than that I didn’t do it sooner!