What ‘phantom rectum’ really is – and why people experience it

You might not be aware, but thousands of people across the country are currently living with an ileostomy bag as a result of a condition such as bowel cancer or Crohn’s disease.

According to the NHS, an ileostomy is a procedure in which the small intestine is diverted through an opening in the tummy.

This opening is called a stoma and a bag is placed over it to collect waste products that would normally pass through the colon and out of the body.

Being told you need to undergo an ileostomy procedure is incredibly daunting as the results are life-changing and bring with them various side effects.

YouTuber and author Hannah Witton underwent ileostomy at the start of this year after suffering with ulcerative colitis from the age of seven.

Since then she’s been keen to discuss what this means for her and break down taboos surrounding the subject – she even stripped off and showed the world her ileostomy bag in a Little Mix music video promoting body confidence.

Most recently she joined BBC presenter Sam Cleasby and fitness model Blake Beckford to celebrate Crohn’s and Colitis Awareness Week and answer the many questions people have about ileostomy bags, stomas and everything in between – including a bizarre side effect known as phantom rectum.

Hannah started by telling bbc.co.uk that her stoma looks "red, squishy and moist".

She added: "It has no nerve endings, you can’t really feel it if you touch it, and poo comes out of it."

The group then went on to discuss how difficult it is to have a bag.

Sam explained that at first it’s "all consuming", but it gets easier.

She said: "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."

Similarly, Hannah revealed that she’d become accustomed to life with an ileostomy bag and often forgets that she even has one.

"I often forget I have one until I go to the toilet," she admitted. "The only time I feel it, is if there is any kind of gas. Then the bag gets a little bit crunch, or if my output is kind of liquidy, then it gets a bit sloshy."

But while they may have adjusted to their new way of living, all three say they have experienced some side effects – including a phenomenon known as phantom rectum syndrome.

So what is phantom recutm?

Phantom rectum is a complication that affects people with ileostomies.

The NHS say the condition is similar to that of phantom limb, where people who have had a limb amputated feel like it’s still there.

In this case, those experiencing phantom rectum will feel as if they need to go to the toilet, even though they no longer have a working rectum.

"It’s like your brain doesn’t know that it’s not attached anymore," explains Sam.

Hannah also claims she used to get it all the time following her surgery.

"At the beginning I got it all the time," she said. "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.’"

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