It was a calm morning in late September 2010, about two in the morning to be precise, when I spotted my chance. The exit was clear. Go go go!

As I fired forward at top shuffle-speed toward the exit, catheter in hand and hospital gown flashing open my naked rear to the old women in the next bay, a spritely nurse who must’ve heard my slippers scuffing the floor as I dragged my feet along, sauntered past and asked if I’d like any help getting back to bed.

After some deliberation and discussion, I decided trying to escape could wait for another night. And on the bright side the old women would, with all likelihood, get another chance to glance at my naked white glutes. Delightful.

It was about then that it became clear I was firstly more nervous about having my operation than I’d been letting on, even to myself, and secondly that I definitely had some kind of sensitivity to morphine. The stories…

Summer 2010

Admittedly it had been a whirlwind few months. At the start of the summer I’d sat down with my then-wife in NHS Lothian’s Western General Hospital, Edinburgh, for a consultation and been presented with my options.

Either continue having frequent and regular colonoscopies, with a 1 in 600 chance of rupturing the bowel lining, with the possibility of even the smallest oversight proving critical (and less frequent endoscopies – camera down your gullet); or have an ileorectal and colorectal anastomosis. That is, remove my bowel.

I opted on the spot for the latter with the proviso I’d think about it over coming days, knowing that right up until the operation I could change my mind. My mind, however, was made up.

It was a surreal decision. I never felt scared (unless I started to daydream about it too much…). In truth I’d been preparing for this for years so it wasn’t a spontaneous decision.

An ileorectal and colorectal anastomosis is, in essence, having the main part of the large bowel, the bit that connects your rectum and stomach, removed and the two remaining parts sewn together. This, with the intention of reducing the chances of me developing bowel cancer. Of course that greatly simplifies what is a highly complex procedure, which for me was led by a professor who was and is a leader in his field.

The large bowel is the body part that removes liquid from your stool, meaning I’m now less ‘solid’ that I used to be. Too much information? If you think that’s crude then I’m afraid that is the reality. Infact I’m actually holding back in my description, but I promise my story doesn’t get any more vivid than that. And maybe one good reason to make sure that, if you’re of the right age group, you’re picking up, scooping and posting your bowel screening test kit!

Less is best

So why go through this? Simple really. The less bowel there is to check the better the chances are of detecting every polyp. These are the growths that can occur on the inside of my bowel that, if left unchecked, may develop into a tumour.

Just days prior to my great hospital escape bid, my Grandad was cremated. I wasn’t able to attend though as I was, luckily, and I say that with honesty and no exaggeration, laid out flat in an operating theatre about to embark on the biggest decision of my life.

I say I’m lucky because my Grandad had bowel cancer, twice, and survived, dying eventually as a result of dementia-related causes. This was followed by my Mum being diagnosed with (and surviving) bowel cancer in her late 40s. Both went through arduous and emotional treatment.

While in hospital Mum was asked by a medical student if she’d like to take part in research looking at the genetic links of bowel cancer. Much later it was established that hers was hereditary, and as a result I had a blood test which confirmed I too carried the attenuated familial adenomatous polyposis (AFAP) gene.

What a load of FAP

Say what? Basically, the FAP gene can cause multiple noncancerous growths (polyps) in the colon at a young age. The attenuated FAP gene is a variant, resulting in the production of fewer polyps, with the age at which they turn cancerous also being slightly later (if you’re an expert reading this then do comment on my interpretation!).


In each of my four or five colonoscopies prior to my operation, 20 or so polyps had been removed or destroyed (I had local anesthetic each time and watched it all happen). So it was really a logical decision using a preventative intervention to mitigate the risk of cancer by removing the main part of my anatomy within which it is most likely to develop.

And I say lucky, because if it hadn’t been for my Mum saying yes to a student’s research then there is a good chance I will have been in her position in 10 years time, or sooner. Talk about mothers gifting life to their children.

Of course there are consequences to having had the procedure, including:

  • I always had a high metabolism but now struggle to keep my, ahem, physique. So it’s normally people saying that about trying to avoid putting weight on, but unless I work out I just lose weight, or at best don’t add bulk, no mater what I eat (mostly)
  • Eating a regular and often balanced diet is my best approach – and I’ve been advised to avoid weight-gain powders to avoid sudden over-load
  • My bowel moves about four times a day, it’s a capacity issue. I’m lucky though that like most people I have control over my bowel movement. Some, especially straight after major cancer surgery, struggle to maintain that control
  • I get acutely hungry but then I’ve always had a high metabolism, so not sure if this is ‘me’ or the condition!

So what’s my point? There are a couple.

  • Don’t ever underestimate the value the NHS adds to our society – I say that as a member of staff and a patient who’s experienced mostly excellent and good, but also average and on one or two occasions poor service and care in the last 10 years
  • Celebrate staff, from all types of roles and levels – the people who do everything to give us life, keep us alive, and when they can’t, make life easier, better or more comfortable. You’re amazing, thank you
  • Some families are fortunate to be untouched by cancer, and for that I’m glad. My step mum and cousin both sadly died of cancer, too young and too soon. And there have been others too. It’s a tragic and often a difficult journey. Be positive and make the most of the here and now because as my Grandad always said, you make your own luck in this game
  • It’s amazing what can happen when you start to talk. I’m open about my situation and know I’m lucky; it’s interesting how mention of my bowel (or someone else raising the issue) has prompted others to open up or confide in me about similar situations, conditions or concerns – it’s good to talk

I decided to share my bowel story after reading about some seriously and terminally ill people sharing their experiences, as well this week’s news that bowel cancer rates among men have risen by nearly 30 percent in 35 years.

I’m not ill, never was, and would it seems have had as much chance of inheriting the AFAP gene if I’d been male or female. In essence my situation is very different to most with a bowel-related condition and as a result my outcomes and living experiences may well be different too. Nonetheless, this may be useful to others. For me it is just a fact of life I live with.

At least there’s learning from this. If you do have a hospital stay in the near or distant future, it’s worth remembering; tie up your night gown before going to bed…

Take it easy

PS I love this. The Poo Song:

(The Poo Song, added 5 April 2013, courtesy of the Scottish Government and thanks to The Leith Agency)

Further health service information:

Photo Credit (top): estherase via Compfight cc
Photo Credit (foot): Aleera* via Compfight cc

14 thoughts on “Bowel cancer: the great escape

  1. Thanks. I hope (my) previous generation of mouthing ‘cancer’ because it is too frightening/might be catching or unlucky will be the last lot to be too afraid to mention it. Your words will doubtless help others.

    • It would be nice if my words would. Throughout, I’ve always actively and appropriately shared thoughts with clinical teams, such as when asked to feedback to St George’s Hospital, during my time living in London, about how their information resources could be improved. But I’ve never thought to actively share my sentiment with others in this way as my circumstances are not the norm and my pathway, experiences and age (37) quite different to most. So if someone takes something positive from my story then it’s worthwhile.

  2. Amazing story, thanks for sharing. My Uncle Pat died of bowel cancer and I miss him terribly. Might have to get the testing kit as another Uncle has also had it.

    • Invites and testing kits to participate in the Scottish bowel screening programme are sent out to people between 50-74, so you might have a few years to wait yet Milo. However, I believe general advice about situations such as the one you describe Milo is to raise the issue with your GP in the first instance. The two top (Scottish) links, for you, will provide more information.

  3. Hi Kenny, thanks for sharing your story. I am sure it will help many who are fortunate to read it!

    • My writing style could do with a bit of polishing but it would be nice if it helped someone. Writing about myself will take some getting used to I think!

  4. Thanks for sharing your story Kenny. The more people talk about their experiences the more people will learn and benefit.

    • I think so too. There are many positives to take from my journey. Everyone has a story, that’s one of mine. Not used to writing about myself, but I’m warming to it! Thanks for reading and taking the time to comment.

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  6. I know exactly how you felt about the op – I had the same condition and have had the same operation, only I didn’t find out about my polyps until I had a tumour blocking my bowel, so I guess mine was a little less optional!

    It hasn’t been as life changing as I thought it would be and there is so much fear around that word ‘Cancer’ that i try and talk about it as much as possible.

    Especially considering I was such a low risk (diagnosed at 27 and otherwise very fit and health conscious)

    I avoid chick peas and carbonated drinks! They just don’t sit right any more and i have massive sugar cravings if i get tired but i think that’s just a left over side effect of Chemo 🙂

    • Wow Jess, that sounds really tough. I’ve never yet met or socially connected with anyone with the same condition. And to be fair, I don’t and never have had cancer, so your experience is clearly far more challenging, undoubtedly more painful and certainly riskier than mine. I am, however, still careful about chilli…!

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