A young father has taken to the internet to raise awareness about a rare medical condition he was born with – he has a missing anus.
Joe, who did not divulge any details about himself other than that he is from the United Kingdom, said he hid his condition for most of his life and suffered extreme shame as a teenager as he often struggled with fecal incontinence.
He is not alone. About one in every 5,000 newborns is born with the condition called imperforate anus, according to Johns Hopkins Medicine.
Doctors usually diagnose it 24 to 48 hours after birth, after noticing that the baby has not produced stool or if they notice stool passing through the vagina, penis, scrotum, or urethra.
Doctors can choose to redirect the digestive system into a pouch attached to the abdomen, called a colostomy, or recreate 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 down the toilet that fills with feces.
And although she says life has been challenging, her condition has allowed her to become a more empathetic person and able to share her story with others without shame.
And there are unique advantages, too, he said: “I’ve 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 to reduce the stigma around it. You use a colostomy bag, which connects your digestive system to an external tube that can be emptied, to go to the bathroom.
Joe said his condition also has advantages, such as having a regular bathroom schedule once a day instead of having to go to the bathroom at random times.
Imperforate anus is caused by abnormal development during pregnancy, according to Johns Hopkins University.
Many times, the condition occurs along with 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 in the genitals or urinary tract.
Typically, the first line of treatment is to perform a colostomy, a procedure in which surgeons make an incision through the abdomen into the large intestine. This system is then connected to a bag or tube on the outside of the body into which the waste is emptied.
If the patient has other complicating factors, the doctor may choose to keep them in this external system.
Otherwise, they may be a good candidate for surgery to reconstruct the anus. Joe, what’s up? MrMagicToilet onlineHe has a combination of these two: he relies primarily on an external system, although his anus was reconstructed at birth.
You have what is called an antegrade continence enema (ACE) and as a result, you have to insert a tube into an opening in your abdomen each morning and clean out the lower part of your intestine using an enema. The waste then comes out of your reconstructed anus.
About 90 percent of children born with anal malformations can be treated with surgery.
While about 70 percent of girls can be treated this way.
This is because certain additional abnormalities along with imperforate anus, such as interconnected digestive and urinary organs, appear to be more common in women than in men.
And these other malformations can make the operation riskier.
An anonymous Reddit user with the name Redfan22 He has also published about his experience living with an imperforate anus and a surgically manufactured sphincter, the muscle that surrounds the anus and controls the release of stool.
Both Redfan22, an anonymous Reddit user who suffers from the disease, and Joe have accepted their situation and encourage other people who suffer from the disease to live without shame.
The 23-year-old had surgery just days after birth, so he didn’t experience life with a colostomy, but he said his surgically constructed anus functions much like anyone else’s.
He also doesn’t know the details of his procedures, but said that, as he understands it, the surgery involved “was very cutting.”
Now, his muscles that control the area are not as strong as other people, so he has had to deal with some challenging issues over the years, mostly related to leaks.
Redafan22 said: ‘As I get older, they are supposed to get stronger. I was very lucky because my parents could afford to take me to a doctor a few states over, who specialized in this issue, and used surgery to stop the leaks.’
A different user, SeaCloud3218He also anonymously shared his experience on Reddit. They also said that his sphincter is not as strong as a natural one would be.
They wrote: “I don’t have anal control like a normal person” and added that the condition and concerns about leakage severely affect their social life.
SeaCloud3218 said: ‘It limits my social life. I feel pressured. I have gas incontinence. I go to the bathroom frequently.’
The anonymous user, who did not share personal details, said they are currently saving money for additional surgery to make their lives easier.
Both Redfan22 and Joe have accepted their condition, encourage other sufferers to live without shame, and accept questions from people online.
At the end of the day, everyone goes, whether from their butt or inside a bag.