Katia Pilar, 76, resented her stoma bag but is now completely at ease with it
In October 2024, I returned from a bridge-playing holiday in Sri Lanka, with a hugely bloated stomach. I attributed it to diverticulitis, diagnosed 30 years earlier. I went to my GP, who recommended I attend Ashford A&E for a scan. It started an NHS experience: triage, CT scans, two nights waiting in corridors and a five-hour emergency operation.
On recovery from the anaesthetic, I felt down my body to find a bag attached next to a huge five-inch scar starting from my belly button.
The surgical team passed by the next morning and said they had removed a blockage from my sigmoid colon. They had also created a stoma, or opening – and around it a bag had been stuck on, to collect my poo.
This stoma was reversible. So I did not need worry.
I was very grateful to be alive, thanks to my consultant, Mr Shrestha, his knife and his team. But I could not adjust to the stoma, emotionally or physically.
It looked like the baby alien as it emerges from John Hurt’s tummy in the first Alien film, but without the teeth. I resented it.
Speciality stoma nurses came daily to instruct me how to change the bags. But I could not manage to overcome my mental
aversion to the stoma itself. It was only on discharge
from hospital to home, with my stoma travelling bag, containing a key for disabled lavatories in the UK plus stoma paraphernalia, that I was forced to cope.
The NHS organise a local stoma nurse team to visit patients at home, along with Secure Start, a private company who make contact over the phone across the country, working with the NHS.
The number of patients on their books is more than 20,000. My local stoma support team has 3,000 patients.
I started researching my condition to try to come to terms with it. I am classified as disabled (but am unfortunately not eligible for a Blue Badge parking permit).
I have a new identity – ostomate or colostomist – and I use ostomy supplies. These supplies – stoma bags, wipes, disposal bags – are provided free of charge through the NHS and delivered to ostomates’ homes.
You should minimise a high intake of alcohol, which can be conveniently interpreted as you see appropriate – don’t hit Jeffrey Bernard levels.
You can eat normally with a stoma, though certain foods and drinks, such as cabbage and beer, should be avoided because they cause gas.
The gas can be prolific and cause the bag to inflate like a rugby ball. The smell created – open drains, with a hint of cabbage – is putrid. It weirdly does not relate to any food you’ve eaten, nor does it resemble normal fart smells.
I never release the gas or change the bag in other people’s houses unless I’m staying overnight somewhere.
Then I always take a large spray bottle of Febreze.
I do not discuss my stoma publicly. Thanks to its easy fitting, it’s simple to disguise the bag. As long as you control the contents and pong, there is no need for anyone to know.
Dates for the first colostomy/stoma operations differ. One was performed in 1710 by Alexis Littré, a French surgeon. Another early operation was in 1750, with a colostomy for a Margaret White, 73. The first stoma bag arrived in 1957. Before then, the surgery was deemed ‘secret surgery’, which left patients as social outcasts owing to the fear of odour and leakage.
Before that first bag, all sorts of devices were used – they look as if they’ve come straight out of an S&M catalogue.
Now there is a large range of suppliers, with a huge choice of products at various price levels – my bags cost £52.27 for a box of 10. Given that 190,000 people have stomas in the UK (one in 335), what a huge cost this must be to the NHS. More people than you think have a colon condition. Sufferers have included Napoleon, Fred Astaire, Dwight Eisenhower and Tracey Emin.
As I became more adept at changing bags, the stoma started to change in appearance – shrinking, becoming benign, friendly and no longer the enemy. It produces less gas and fewer noisy emissions. I can control my bowel functions.
There’s no constipation and no prospect of years wearing grown-up nappies because of incontinence. I play tennis, swim and walk miles. I use the condition as an excuse to get out of horrid tasks such as moving furniture, tedious housework, mowing lawns and carrying heavy shopping.
The idea of a stoma reversal becomes less attractive. I am 76. It would entail another major operation. Should the NHS stop providing the stoma bags, I would make my own using gaffer tape and plastic food bags.
I accept my new appendage – the result of a life-saving intervention by the blessed Mr Shrestha.
