Talking about incontinence: colon cancer from a patient’s perspective

As a nurse, Bethann Siviter thought she understood what patients go through. Then she started experiencing symptoms of colon cancer 

As a nurse, Bethann Siviter thought she understood what patients go through. Then she started experiencing symptoms of colon cancer 

Image: iStock

Be prepared, get your pinny on – I’m going to talk about poop. Faeces. A nurse’s stock-in-trade. At least when it’s someone else’s: talking about our own is a bit more difficult.   

My hope is that by sharing my journey with you it will give you more insight into the patient experience. I also want to help you keep yourself healthy and strong.

To start at the end of the story, I have colon cancer. Getting to a diagnosis meant facing things I’ve found embarrassing and difficult. I put off asking for screening until the list of symptoms in my head – obese, sedentary, 55+, changes in bowel habits, bleeding, pain – set off alarms. I knew I had to face both my fears and my GP, but I reasoned ‘not yet’.

Coming clean

Do you have any idea how hard it is to admit you have faecal incontinence? We reassure patients – ‘It’s ok, it’s nothing to be embarrassed about…’ – but now, as I experience colonic revolt, I realise it’s humiliating to feel ‘dirty’ and out of control. It’s hard to talk about.

Stress incontinence was bad enough, but with adverts for ‘pretty pants for sensitive bladders’ it’s less stigmatising to wee your britches. Faecal incontinence remains a completely different issue.

'When the doctor got to the end of my colon, my heart fell. There was a butterfly-shaped, 4cm-plus tubulovillous lesion'

The last thing in the world I wanted was a colonoscopy. I knew the prep needed, and I didn’t want that either. I knew if I told the GP about the constant (and very unpredictable) diarrhoea, incontinence, bleeding and pain he would most certainly overreact completely and refer me.

But the alarms in my head were insisting that a referral and scope was just what I needed, while my ‘Matron Stubborn-pants’ voice said to drop the issue and go find something to clean. Given my symptoms, finding something that needed cleaning was not difficult.

Easier to suffer

It made me reflect how often we ask patients ‘Why didn’t you say something?’, incredulous at the suffering someone has endured. They reply, ‘I didn’t want to bother anyone, I thought it would get better’.  

I understand now: since you don’t want to talk about it, and you certainly don’t want anyone doing anything scary, it’s easier to just suffer.

The alarms wouldn’t stop, so I confessed to my GP, and within two weeks I saw a doctor who did a sigmoidoscopy. The humiliation I felt meant that when he said, ‘we will sort your symptoms after diagnosis’, I found myself defaulting to the patient mantra of ‘yes, doctor’ when my brain was screaming, ‘Help! Fix me!’.

A couple of days later I got a present with my colonoscopy appointment: MoviPrep. Also known as ‘colonic TNT’, it clears even the memory of meals from your colon. Feeling thoroughly cleansed (you pay big bucks for this stuff in a new-age spa), I watched the screen showing the scope and marvelled over the couple of polyps and how nice they looked.  

But when he got to the end of my colon, my heart fell. There, in living colour, was a butterfly-shaped, 4cm-plus tubulovillous lesion, nestled into the top of my cecum. 

Reclaimed dignity

He did several biopsies, called the nurse over and whispered: ‘Mark: ‘urgent’…’

The next week I went for a CAT scan, where a healthcare assistant asked about my undergarments in front of a mixed-gender crowd of waiting patients (always a showstopper).  

This time Matron Stubborn-pants was having none of it. Faeces, fine. My pants? No. I hissed something about privacy and reclaimed my nurse status by lecturing the HCA on patient dignity.

Matron was still cross about me giving in to screening, but she approved of me preaching about patient rights.

Bethann Siviter is an independent nursing consultant

Next time: Finding out and facing the next steps

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