Why do people experience phantom rectum? By Emma Tracey & Beth Rose

BBC News, Ouch Published duration 6 December 2018

image copyright Linda Blacker

There's nothing about sex and relationships that author and YouTuber Hannah Witton will shy away from talking about - including little-discussed topics such as disability and sex. She's frank, informed, funny and focused on breaking down taboos.

Then there's the Little Mix video. Recently, the 26-year-old - who earlier this year underwent emergency surgery to have her colon removed and a stoma created - featured in the band's music video for the song Strip.

The stoma - an opening in the tummy - means Hannah lives with an ileostomy bag she calls Mona. She has blogged about her journey to "love her new body", including publishing a mini-documentary about an underwear photo-shoot in which her stoma and her scars are on display.

Here, and for the Ouch podcast , she "shoots the breeze about pooing into a bag" with two more experienced stoma users - 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".

image copyright Linda Blacker

Thousands of people in the UK are living with a stoma bag, having undergone surgery for a number of conditions, including bowel cancer, Crohn's disease and ulcerative colitis.

Here's everything you didn't know you wanted to know about living with an ileostomy bag - warning, topics include phantom rectums, Barbie butts and sex.

What on earth's an ileostomy bag?

An ileostomy is an operation involving the small intestine being diverted through an opening - or stoma - in the abdomen. A bag is then placed over the stoma to collect liquid and waste, which is emptied into the toilet.

According to Hannah, the stoma looks "red, squishy and moist. It has no nerve endings, you can't really feel it if you touch it, and poo comes out of it."

All three had theirs fitted due to ulcerative colitis - where the colon and rectum become inflamed and ulcers develop on the colon's lining.

"I often forget that I have one until I go to the toilet," says Hannah. "The only time I feel it, is if there is any kind of gas. Then the bags get a little bit crunchy, or if my output is kind of liquidy, then it gets a bit sloshy."

image copyright Blake Beckford

Is it high maintenance?

"At first it's all consuming," says Sam. "You have to learn this whole process of how you look after it, how you change it, how you empty it. Now it is totally just part of my daily routine - I have a shower, change my bag."

All three say they also have to get up in the middle of the night to empty their bags to prevent leakage.

Can you eat normally?

"My family is Indian," says Sam. "When I was in hospital a nurse told me: 'You'll never be able to eat curry again.' 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."

She says, though, that the first time she ate beetroot, after the surgery, she was horrified: "I thought I was haemorrhaging from the inside out."

Having a stoma means food isn't digested as well as someone with a fully-functioning system.

Hannah finds it "fascinating and disgusting" to watch food emerge and likes to "pull out long bits of mushroom". Sam, meanwhile, looks out for whole peas in her bag, and pops them while they're in the pouch.

If you think that's all there is to know about stomas, there's plenty more on our frank and funny podcast...

media caption Three people shoot the breeze about using their stoma bag

Is it smelly?

Hannah says the output - or poo - smells once it's out of the bag, for example while it's being emptied. In the bag, however, she says you won't smell a thing.

"If you smell a fart, it is 100% not me because there are filters. So whoever's got a functioning butthole, it was them."

One thing that does smell a bit fishy when it comes out of the bag is, well, fish. But Sam has a top tip - add a drop of minty mouthwash to the pouch which neutralises the fish so you won't smell a thing.

image copyright Sam Cleasby

Hannah likes to talk about sex, so, does that mean you can still do it if you've had your plumbing re-routed?

"Hell yeah," says Sam.

"You can't take your bag off during sex - you'd let all your output out," adds Hannah. "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 so straightforward for everyone.

"I've got a gay male friend who has a stoma and has the Barbie butt - when you have your rectum and anus removed and they sew everything up, down below. That changed his sex life," says Sam.

Hannah still has a rectum, but says she doesn't think there's enough information out there.

"I've no idea how long it is, how fragile it is. Because anal play is not just a gay thing, it's for everyone, so I don't know what I can do with my butt."

While we're there, what's a 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 adds: "At the beginning I 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.'"

Sounds peculiar, what's the cringiest moment you've had?

For Sam, it was earlier this year in San Francisco. She felt the skin around her stoma start to burn - a sure sign that it's leaking. She found a supermarket with toilets and dashed inside.

"There was a massive queue and by the time I got there it was everywhere - from my boobs to my knees," she says. "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."

Hannah says she has a Can't Wait Card from Crohn's and Colitis UK which she can flash in cafes or shops so she can use their facilities without having to give a long explanation.

Are stomas always so troublesome?

"It's given me my life back," says Blake, "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."

For Hannah, it wasn't so liberating.

She was diagnosed at the age of seven and had a lot of difficulty with inflammation. But between the ages of 15 and 25 she went into remission. This changed last year.

"This flare up just came out of the blue and completely wiped me out. I was in hospital for a month and had to have emergency surgery.

"I don't feel like getting a stoma gave me my life back. I want to go back to my life before all of this. But having said that, I'm not ashamed of it."

Crohn's and Colitis Awareness Week runs until 7 December.

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