A young father has taken to the internet to raise awareness about a rare medical condition he was born with: he lacks an anus.
Joe, who did not divulge any details about himself other than he is from the UK, said he hid his condition for most of his life and suffered extreme embarrassment as a teen as he often struggled with fecal incontinence.
He isn’t alone. About one in 5,000 newborns are born with the condition, called imperforate anus, according to Johns Hopkins Medicine.
Doctors typically diagnose it within 24 to 48 hours after birth, after noticing an infant hasn’t produced any stool, or if they notice the stool pass through the vagina, penis, scrotum or urethra.
Doctors can either opt to reroute the digestive system into a bag attached to the abdomen, called a colostomy, or re-create an anus and sphincter in the operating room.
In Joe’s case, he lives with a colostomy and spends about an hour a day in the bathroom, flushing a bag connected to his gastrointestinal system that fills with stool into the toilet
And while he says life has been challenging, his condition has allowed him to become a more empathetic person who is able to share his story with others without shame.
And there are also unique upsides, he said: ‘I’ve once never been constipated. Apparently that really sucks.’
Joe was born with a birth defect called imperforate anus, and now raises awareness about the condition on his social media in order to reduce stigma about it. He uses a colostomy bag, which attaches his digestive system to an external tube that can be emptied, to go to the bathroom
Joe said his condition also comes with upsides, like having regular toilet time once a day instead of needing to duck to the bathroom at random times
Imperforate anus is caused by abnormal development during pregnancy, according to Johns Hopkins.
Often times, the condition occurs alongside other congenital birth defects – including problems with the spine or a series of interconnected organs. About 50 percent of patients also have a corresponding defect to their genitals or urinary tract.
Typically, the first line of treatment is performing a colostomy – a procedure where surgeons make an incision through the abdomen and into the large intestine. This system then gets connected to a bag or tube on the outside of the body that waste empties into.
If the patient has other complicating factors, then a doctor may opt to keep them on this external system.
If not, they may be a good candidate for a surgery to reconstruct an anus. Joe, who goes by MrMagicToilet online, has a combination of these two- relying mainly on an external system, though he had an anus reconstructed at birth.
He has what’s called an antegrade continence enema (ACE), and as a result has to insert a tube into an opening in his abdomen each morning and flush out his lower bowels using an enema. The waste then comes out of his reconstructed anus.
About 90 percent of boys born with anal malformation can be treated with surgery.
While about 70 percent of girls can be treated this way.
This is because certain additional abnormalities alongside imperforate anus, like interconnected digestive and urinary organs, seem to be more common in females than in males.
And these other malformations can make it more risky to operate.
An anonymous Reddit user with the name Redfan22 has also posted about his experience living with imperforate anus and a surgically made sphincter – the muscle surrounding the anus that controls the release of stool.
Both Redfan22, an anonymous Reddit user who has the condition, and Joe have come to terms with their situation and encourage others with it to live without shame
The 23-year-old had the surgery within days of being born, so he didn’t experience life with a colostomy, but said his surgically constructed anus functions much like anyone else’s.
He also doesn’t know the details of his procedures, but said, as he understands it, the surgery involved ‘was a lot of cutting.’
Now, his muscles that control the area aren’t as strong as they are in other people, so he’s dealt with some challenging problems over the years, mainly involving leakage.
Redafan22 said: ‘As I get older they’re supposed to get stronger. I was very lucky because my parents were able to afford to take me to a doctor a few states over, who specialized in this stuff, and used surgery to stop leakage.’
A different user, SeaCloud3218, also anonymously shared their experience on Reddit. They likewise said their sphincter isn’t as strong as a natural one would be.
They wrote: ‘I don’t have anal control like a normal person,’ and added the condition and concerns about leakage severely impact their social life.
SeaCloud3218 said: ‘It limits my social life. I feel pressured. I have gas incontinence. I go to the toilet frequently.’
The anonymous user, who didn’t share personal details, said they’re currently saving money for an additional surgery to make their life easier.
Both Redfan22 and Joe have come to terms with their condition, encourage others with it to live without shame and welcome questions from individuals online.
After all, everyone goes, whether its from your bottom or into a bag.