Bowel disease patients share torment of suffering ‘phantom rectum’ syndromeDecember 7, 2018
BEING told you need a ileostomy bag is a life-changing experience.
And for so many people living with bowel disease, it’s a daunting possibility.
Not only do patients have to learn to deal with their stoma bag, be it temporarily or permanently – but there are also host of side effects.
Probably the most unusual is a phenomenon known as “phantom rectum” syndrome.
It leaves patients feeling like they still have a working rectum, when in fact they don’t.
Their brains tell their body they still have the same urges to poo – urges that cannot be fulfilled.
YouTuber Hannah Witton, BBC presenter Sam Cleasby, who runs the So Bad Ass website, and Blake Beckford who is “most well known for having a stoma and a sixpack”, have opened up about their experience of having an ileostomy bag for the Ouch podcast.
So what is it like to experience “phantom rectum”?
“People who have lost a limb, still feel pain or itching or they feel like their limb’s still there,” says Sam.
“So that’s the same but in your rectum.
“It’s like your brain doesn’t know that it’s not attached anymore.”
Hannah said when she first had her bag fitted she got it all the time.
“I was talking to my nurse about these urges that I need to poo. She said: ‘Next time just go sit on the toilet and feel it out’,” she added.
When is a stoma needed?
An ileostomy is when the bowel is diverted through an opening in the abdomen and all waste product empties into a bag, instead of doing a number two the conventional way.
Around 9,000 procedures are done in the UK every year, according to the NHS.
In some cases the bowel is diverted but everything is left in place but in other cases, particularly with cancer, there’s too much damage and the bowel and rectum have to be removed.
SUCCESS FOR BOWEL CANCER CAMPAIGN – BUT NOW WE NEED ACTION
The Government announced in August it would lower the bowel screening age from 60 to 50 across England and Wales after The Sun’s No Time 2 Lose campaign.
Bowel cancer is the 2nd deadliest form of cancer, claiming 16,000 lives a year, but it CAN be cured if it’s caught early enough.
Fewer than one in ten people survive bowel cancer if it’s picked up at stage 4, but detected quickly, more than nine in ten patients will live five years or longer.
That’s why The Sun launched the No Time 2 Lose campaign in April with Bowel Cancer UK, calling on the Government to offer a simple poo test to everyone, every two years, from their 50th birthday.
But it’s still not known when the changes will come into place.
Dr Lisa Wilde, director of research at Bowel Cancer UK, said: “We know that screening is the best way to detect bowel cancer at the earliest stage when it gives us the greatest chance of survival.
“We’re pleased that the governments in England and Wales have already committed to lowering the screening age to 50 and introducing a new and more accurate bowel cancer screening test.
“However to make this a reality it’s vital to ensure that the NHS has enough staff to support the delivery of these life-saving improvements to the screening programme.”
Dr Widle is also urging men to learn the signs of bowel cancer.
“Almost 42,000 people diagnosed with the disease every year,” she said.
“And yet 45 per cent of men are unable to spot any symptoms of the disease.
“That’s why we’re asking men to get sponsored to grow a beard for the charity throughout December to help raise awareness of the UK’s second biggest cancer killer.
“Your support will fund vital services and lifesaving research to help ensure a future where nobody dies of bowel cancer.”
Charlotte Dawson, nurse adviser for Bowel Cancer UK, said in both cases there can still be some pain around the rectum.
“If patients have had a stoma fitted but they still have a bit of bowel coming down, the cause of the pain can be that bit of bowel that still produces mucous,” she told The Sun.
“The mucous can build up into a plug which can be very uncomfortable and cause pain and spasm.
“For patients that have that the best thing they can do is to try and expel the mucous, so go and sit on the toilet normally and often they will push out a bit of mucous and find that eases the discomfort quite a lot.
“The other thing is the bowel doesn’t like sitting and doing nothing, so what happens with that bit of redundant bowel is that it can get inflamed and that adds to the discomfort.”
But if a patient has had their entire rectum and bowel removed and still experiences pain, it’s often because the nerves have been severed as part of the operation but receive signals every now and then, Charlotte said.
If you are experiencing pain it’s always a good idea to speak to your doctor.
So how does an ileostomy affect a patient’s life?
What is sex like?
Having an ileostomy bag doesn’t stop you having sex, but it can make it difficult because it may knock your confidence.
“You can’t take your bag off during sex – you’d let all your output out,” Hannah said.
“For me it was more the mental barriers like body confidence, feeling insecure and overcoming those. From a physical sense it doesn’t really affect anything other than a bag flapping around.”
But it’s not as easy for everyone.
Sam tells of how she has a gay male friend who has a stoma and had the “Barbie butt” op – where you have your rectum and anus removed and sewn up – so that has completely changed his sex life.
Does it smell?
No, you won’t smell all the time.
When you are emptying the bag it will smell, but there won’t be a bad smell lingering around you when the bag has waste in it.
Does it change what you can eat?
It may do to begin with, but it’s just a case of testing out which foods are OK and which aren’t, Sam said.
“My family is Indian. When I was in hospital a nurse told me: ‘You’ll never be able to eat curry again’,” she added.
“I was ready to rip out the drips in my arms. She was wrong.
“You have to just try different foods and now there’s pretty much nothing that I wouldn’t eat.”
Is it as bad as it sounds?
Hannah said she doesn’t even notice the bag is there now she has got used to it[/caption]
“It’s given me my life back,” Blake said.
“Because living with ulcerative colitis was just dreadful. You feel a lot of pain and sickness.
“I’d get to a point where I wouldn’t leave the house for the sake of having an accident.”
MORE ON BOWEL CANCER
What’s the worst moment you’ve ever had?
For Sam it was in San Francisco earlier this year.
She was in a supermarket when she felt the skin around her stoma burn – the first sign it’s leaking.
She found a shop with toilets and went straight inside.
“There was a massive queue and by the time I got there it was everywhere – from my boobs to my knees,” she said.
“I ended up having to throw away my leggings and T-shirt and had to come out of the toilet in just a bra and dungaree dress crying and walk slowly past this queue of people.
“There are times where it just feels quite devastating to have an accident in public, but I can laugh about it now.”
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