Alex Moss, 25, from Prestbury, Cheshire, was born with a condition so rare it affects just one in 3,000 babies in the UK – and it’s had a debilitating impact on his life
A young man, born with a condition so severe that he has to use the toilet up to 20 times a day, has shared his harrowing experience.
Alex Moss was born with anorectal malformation, a rare disorder affecting only one in 3,000 babies in the UK. This birth defect occurs when a baby is born without a normal anal opening. At just 17 hours old, Alex underwent life-saving surgery to create an artificial opening.
Despite the successful procedure, a lack of sensation in the area means he is prone to accidents and must always be near a toilet. To help manage his bowel movements, the 25 year old from Prestbury, Cheshire, had Antegrade Continence Enema (ACE) surgery at age 12.
The ACE procedure involves doctors creating a small opening, usually in the belly, connecting to the colon. Through this opening, a special liquid (an enema) can be inserted to flush out the bowels and prevent accidents.
It helps maintain regularity and better control over bathroom visits. Over time, the passage gradually narrows and can eventually close completely, reports the Manchester Evening News.
When Alex was 17, he underwent the procedure again, but it closed up once more. Alex hopes to undergo another procedure, but due to delays, he’s been on the waiting list for many years.
The young man now endures life with this terrible condition – one that has shattered his hopes and dreams for the future.
“I’m always told the surgery will be next year,” he lamented, “And that next year things will be different, but nothing has ever changed. I’ve lost 10 years of my life which should have been the best 10 years. I wanted to go to university to study history.
“I’ve got a couple of close friends and sometimes they will come round for a bit, but I don’t go out and I can’t make new friends.”
Describing his debilitating afflictions, Alex said the agony caused by stomach cramps is so excruciating it’s akin to being “skinned alive”. Furthermore, an essential need to remain within proximity to a loo to stave off embarrassing accidents – incidents he’s unfortunately experienced in public – means that he frequents the lavatory up to 20 times every day.
His struggle doesn’t end there; alongside this terrible condition, Alex battles with a litany of other gastrointestinal ailments such as ulcerative colitis, sores in his esophagus and ongoing pancreatitis. The implications of these disorders are dire not only on his mental health but also carry the risk of being lethal if his bowel obstructs or his ulcers haemorrhage.
With determination to overcome these challenges, Alex, together with his supportive family, is engaged in fundraising activities with the goal of obtaining the critical surgery through private means. Sharing more about his torturous symptoms, Alex disclosed: “I was having stomach cramps so awful it was like being skinned alive from the lower bowel,” and admitted, “I missed a lot of school due to it. I was also severely bullied for the condition.”
He clarifies the urgency behind seeking private treatment: “The main reason I’m trying to have it done privately is so I can have it done sooner and hopefully just try and get on with my life.”
She said: “I have no idea how [having the procedure] would feel. It would be incredible. It’s just something that I’ve put so far away in my mind because I’ve been let down for years.”
“You just lose the hope a bit – it’s like it’s dangled there in front of you but taken away at the last minute.”
