Being Upfront About Bowels

Reading about the feisty ladies beating breast cancer has got me envious. Hold up, no, I’m not envious of having breast cancer, I’ve just gone green for all the truly fantastic awareness campaigns that highlight their stories.

I have a cancer of my own. My cancer is bowel cancer (stage four with metastasis to the liver). On a scale of sexy, bowel cancer has to be one of the least sexy cancers you can have. Granted, no cancer is sexy, and cancer treatment of any kind is the least sexy of all. But when mustering the courage to talk about cancer, with family or friends, or even publicly if you dare, talking about your bowel movements is not for the faint hearted.

When I saw recent statistics that said one in four ladies don’t go for cervical screenings, it blew my mind! Perhaps it’s easier for someone like myself who’s gone through invasive treatment to be nonplussed by a speculum up my lady parts, but really ladies, it’s more comfortable than a value priced tampon. (And comes without a luxury goods tax too.)

So it got me wondering about our attitudes to talking about “what’s normal”. Whether it’s your lady lumps, your vajayjay or your arse hole, we need to talk. Less-than-fun-fact, bowel cancer is increasing in people under 50 in the UK.

To put my money where my dirty mouth is, I am happy to share my story with you.

The day before my 28th birthday in December 2016, I was diagnosed with bowel cancer, and sent home from hospital after an emergency surgery to remove half of my large colon and put an ileostomy in place. 10 days before, I had been put under general just hours after being told that there was a blockage in my large colon which they were afraid would perforate my bowel if they didn’t remove it that day. I was also told they might have to leave me with “a bag”, but they promised it could be temporary. I had no idea what “a bag” was, and in my wretched state I didn’t have the wherewithal to ask. Three and a half hours later I came to and found out just what they meant.

So began my education of just what your bowel does, and how when we put our pearly whites round anything consumable, that’s just the beginning. I’ll save you a biology lesson just now, instead I want to talk about what was going down months before, or rather, what wasn’t going down.

There are five key symptoms of bowel cancer, no matter what your age:

1.  Bleeding from your bottom and/or blood in your poo

2.  A change in bowel habit lasting three weeks or more

3.  Unexplained weight loss

4.  Extreme tiredness for no obvious reason

5.  A pain or lump in your tummy

Just two months before my emergency surgery, I noticed symptoms one and five. I had suddenly started getting trouble with wind… Not actually releasing any (that would be more fun, and honestly, more satisfying), but actually feeling as though wind was forcing its way through my bowels in a bid to get out. I was having occasional, but eye-watering, abdominal cramps that passed from one side of my abdomen to the other, but they would subside. I had one phone call about this with a nurse at my GP, and we put it down to wind…

Just over a week after developing my Wind-eze habit (other digestion relief tablets are available), I had one instance of blood on the toilet tissue. I rang NHS Direct 111 and conferred with someone with some medical knowledge. I reassured myself that it wouldn’t be fatal and I could speak to a GP about it – just as soon as I had come back from a two week holiday I was embarking on…

I never went to see the GP. But it never happened again, so why would I?

My cramps didn’t stop though. I actually remember thinking “maybe this is what happens when you get older: you get wind and indigestion!”, but clearly I thought I was still too young to get anything like cancer. Oh the irony.

To cut a long story short, the cramps persisted until one night they never stopped. After enduring 24 hours of getting them every ten minutes, I was misdiagnosed with the norovirus in A&E. But the thing that seems so blatant now with hindsight, is despite being diagnosed with the DIARRHEA AND VOMITING VIRUS, I hadn’t passed anything through my bowels normally for a significant amount of time. But I wasn’t then looking for the signs I know now can mean something far more sinister than the winter bug.

I went a whole week of these cramps persisting. A whole week! I couldn’t eat for throwing things back up, but nothing moved below. Something serious was up and after a blood test showed inflammation somewhere in my body, a GP finally recommended I go to A&E again to have it investigated. Cut to my 28th birthday, with half my large bowel intact, and Paloma the Stoma in residence, I was more crushed and beaten down by what they’d found in my body than I ever thought was possible.

It’s now over a year later, and I am still having cancer treatment. One of my biggest takeaways from the experience (and there have been many learning curves) is that knowledge is power. Being informed is what prepares you, builds you up and can ultimately, protect you.

Now I look back on the year before my diagnosis, longer even, and try and remember how I felt in my body. I ran 29 kilometers for charity in September 2015, so I can’t have been in too terrible a shape! But throughout my training I couldn’t push past my wall. I wasn’t making the same progress I had made training for a 25 kilometer run in 2010. Seeing as I had literally started from nothing the first time, I had thought I might at least match my performance from my early 20s, some time later.

In reality, I was actually finding it increasingly hard to get up in the morning. Formerly a high-performing early bird, the snooze button was becoming irresistible. Upping my exercise wasn’t producing the endorphins and the energy I was craving.

But do you know what an early morning run did produce? A run of a different kind. Yes, running, it turns out was the laxative I didn’t know I needed. It was actually what got things moving best of all, at a time that frankly I now recognise as when I was producing sub-par excrement. Things weren’t “normal” for a while. I have to say as shits go – mine were not satisfying.

So that means I did experience four out of five symptoms of bowel cancer, to some degree, before my rather dramatic diagnosis. What would I have done if I had known that they were symptoms of cancer, and it was possible to experience the condition, in my twenties? I don’t know. If there’s anything cancer teaches you, it’s the importance of living in the present, and not to look back or regret.

But I now talk about my bowel movements to anyone who’ll listen. Being an ostomate, with the exit from my small colon outside of my body pouring its contents into a medical grade accessory, I am on good terms with my bodily waste. I know how different matter going into my mouth will present itself later on. It’s something I have chosen to embrace and I have swatted up on what’s good for my belly and good for my stool. Awareness of what your body is producing day-to-day means you’re informed and can react if something ain’t what it should be.

So if the boobettes can teach you to check your mammaries, us bowlies can teach you to get familiar with your turd. My brother in law has a whole spreadsheet for the excretions of my niece (she’s three months old) so that would be taking things too far. Somewhere between that and what you’re doing now is probably about right. But it wouldn’t do you any harm to familiarise yourself with the Bristol Stool Chart….

Here are some fabulous ladies not afraid to talk about feces:

Deborah Alsina – bossing it as CEO of Bowel Cancer UK & Beating Bowel Cancer –  @deborahbcuk

Deborah James – Stage four bowel cancer sufferer and all round Woman Warrior – @bowelbabe

Amy Mattingly – Terminal bowel cancer sufferer and inspirational glitter unicorn – @amerz

Andrea Robson – Recovering stage two bowel cancer and ulcerative colitis sufferer, and proud ostomate – @goodasgold_akr


On Bowel Cancer in Young Adults:

How to prepare for a visit to your GP:

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