Man Living with Rare Condition Speaks Out: ‘I’ve Lost 10 Years of My Life’

Alex Moss, a 25-year-old from Prestbury, Cheshire, was born with a rare condition called anorectal imperforation, a birth defect that affects just one in 3,000 babies in the UK. This disorder occurs when a baby is born without a normal anal opening, requiring life-saving surgery shortly after birth. At just 17 hours old, Alex underwent surgery to create an artificial opening, but the challenges he faces have persisted throughout his life, told the Mirror.

Despite the initial procedure’s success, Alex has little to no sensation in the area, leading to frequent accidents and requiring him to be near a toilet at all times. “I can use the toilet up to 20 times a day,” Alex shared, describing the daily toll his condition takes on him.

At the age of 12, Alex had a procedure called Antegrade Continence Enema (ACE) surgery to help manage his bowel movements. The surgery involves creating a small opening in the abdomen, allowing him to flush out his bowels with a special liquid, giving him better control. Unfortunately, over time, this opening closed up. A second attempt at the surgery when he was 17 also failed.

For years, Alex has been on the waiting list for another procedure, but continuous delays have left him feeling stuck in a nightmare. “I’m always told the surgery will be next year,” Alex said. “And that next year things will be different, but nothing has ever changed.” His condition has stolen a decade of his life, derailing his dreams of going to university to study history and isolating him socially. “I’ve lost 10 years of my life which should have been the best 10 years,” he reflected.

The physical pain Alex endures is immense. He describes the stomach cramps caused by his condition as feeling like being “skinned alive.” In addition to his anorectal imperforation, Alex suffers from several other gastrointestinal issues, including ulcerative colitis, esophageal ulcers, and chronic pancreatitis, making his condition even more difficult to manage.

The psychological toll has been equally crippling, with the fear of accidents and severe pain limiting his ability to leave the house or make new friends. He hopes to undergo the necessary surgery privately to finally move forward. “It’s like it’s dangled there in front of you but taken away at the last minute,” he said, sharing how years of waiting have made him lose hope.

“I have no idea how [having the procedure] would feel. It would be incredible,” Alex added, hoping for the chance to reclaim his life after years of suffering.