Life with an imperforated anus: ‘You hate your body, you hate yourself’

CHRISTI has spent much of her life hating her body and suffering in silence. She hasn’t even told her workmates about her rare condition. But she’s ready to reveal her story.

Christi hasn’t told many people this, but she was born with an imperforated anus. She wants to come out and raise awareness about the condition so others don’t suffer alone. Picture: Rick Liston for news.com.au

THERE’S a painful, searing childhood memory that will never leave Christi, 42, and when she speaks it out loud her voice tremors.

“They had one of these little two-by-two metre cubby house things in the Kindergarten yard and I swear every single child in the whole class was somehow in that box like a sardine, jammed in there,” she recalls.

Every child except four-year-old Christi, that is.

“I asked if I could get in there and then all the kids yelled out that I couldn’t go in there [and that] I was horrible and I smelled of poo.

“It really stabs you in the heart that these kids hate you, they don’t want anything to do with you …[and then] you hate your body, you hate yourself, you wish you could change it and you can do nothing because that’s just who you are,” she says.

The burden of this shame and disgust is something Christi — a warm-hearted and vibrant high school English teacher — has always carried with her. She was born with a complex birth defect called imperforate anus. In plain English, it means a person is born without a hole in their bottom.

While surgery may correct a person’s plumbing, it can’t always fix the nerves and muscles associated with normal bowel and bladder use. This can lead to incontinence — along with many other chronic, lifelong problems.

From start to finish, school was an ordeal for Christi. She remembers that the Kindergarten toilets had “no cubicles and no walls and no doors.”

“That’s like my worst nightmare because you have no privacy. It’s not a simple process to go to the toilet and you’re scared the other children will find out there’s something wrong with you,” she says.

Back then Christi would try to go to the toilet when everyone else was outside playing — a strategy that only had limited success.

“I just remember sitting there all the time wishing and wishing that everything was working because it just doesn’t,” she says.

“I have no sensation, so even today I don’t understand what it feels like to need to do a poo in same way that you do,” Christi tells me.

When she was a baby, her parents were inaccurately told by doctors “once you have the operation you’re fixed.”

Armed with this notion, they assumed Christi’s incontinence was a mental problem, not a physical one.

“I was always getting into trouble for having accidents all the time. My parents were under the impression … I was doing it on purpose and that it was a deliberate choice. When I protested, they said I was lying,” she says.

After a few moments of silence Christi says: “I’ll be honest with you, the first time I wished I was dead I was in prep. I was about five.”

Christi has spent her life suffering in silence. Even her workmates don’t know about her debilitating condition. Picture: Rick Liston for news.com.au

“When you’re told for many, many years of your life that you’re not good enough or that you’re disgusting or that you’re foul, that’s what you start to believe,” she adds.

Dr Sebastian King is a paediatric surgeon specialising in colorectal conditions at The Royal Children’s Hospital (RCH) in Melbourne. His passion is helping children “whose guts don’t work properly.”

“These babies need a lifesaving operation in the first 24-48 hours of life to be able to decompress the bowel,” Dr King says, “the bottom cheeks are abnormal … or they’re not well formed” and “the internal component, the last bit of the bowel, the rectum going into the anus, is abnormal or absent.”

According to Dr King, roughly one in 4000 babies are born with imperforate anus annually. Put another way, that’s about 80 new cases in Australia each year.

He says that historically many babies born with this condition didn’t survive. Although these days this isn’t the case, ongoing health problems may persist.

Dr King explains imperforate anus is often present alongside other issues such as: spinal, heart, renal, oesophageal, limb and genital anomalies. Like Christi, some babies may be born with fistulas.

“So much of this is recognising that these children … are born with such significant anomalies that sometimes we won’t be able to give them the life that you and I take for granted,” Dr King says.

Despite this, he aims to give his patients a fighting chance.

By way of example, Dr King mentions a baby girl with imperforate anus who will endure a nine-hour operation at the RCH the day after our interview takes place.

“We’ll have a one or two paediatric urologists, so that’s the kidney surgeons, we’ll have a paediatric gynaecologist, we’ll have multiple registrars and fellows and we’ll have all our experienced medical nursing staff there,” he says.

Dr Sebastian King has started using 3D printing to help children born with abnormalities of the anus.

Dr King is keen to develop the complex care model much further — especially when it comes to psychological care.

“If you have a child who’s got faecal incontinence at five and 10 and 15 and 20 years [old] then the impact that that has on them — not only from a past experience but a present and future experience — is incalculable,” he says.

Those suffering faecal incontinence as an adolescent, Dr King explains, are likely to struggle forming social and sexual relationships and long-term partnerships as adults.

Eventually Dr King hopes to open a centre of colorectal excellence at RCH, which would bring together all specialties involved in providing care of the colon and rectum in children. (A centre like this already exists in the United States.)

A big proponent of this idea is Maggie*, whose 13-year-old son William* is a patient of Dr King’s.

She describes her son as “gentle” and “very empathetic” to the way others feel. Just like other boys his age, he loves to play computer games and hang out with his mates.

But Maggie knows her son will face hurdles in life that his peers simply won’t. Will is “chronically ill” with two lifelong stomas, double incontinence, recurring kidney infections and the need for a renal transplant “when his current function deteriorates.”

“I refer to William as plumbed but not wired. The bowel and the muscles and the nerves don’t speak to each other at all and his bowel is not innervated,” she says.

Every three hours, Will has to drain his bladder through a stoma — a surgically created opening on the surface of a person’s abdomen. To avoid infection, he has to try and keep the process as sterile as possible. Every other day, he also has to manually empty his bowel.

“We put a catheter into his bowel through his stoma and fill him up with saline and Bisacodyl, which is a laxative, and he sits on the toilet and that washes his guts out,” Maggie explains.

This means that for William, even going out for the day into the city requires an inordinate amount of planning — never mind going away for a family holiday.

Like Christi, Will has also suffered medical trauma.

“As parents we remind our children that our bodies are private and that you don’t consent to strangers touching you. You know, your body is yours and it’s not for touching,” Maggie says.

“Yet from the time he was a baby he would be picked up out of my arms and put on an examination table and his pants would be pulled down and someone would just very quickly pop a finger in his bottom to see how it’s healing or what’s going on.”

Maggie goes on to say Will has endured many “other intrusive medical interventions, such as having a catheter inserted into his penis while a room full of hospital clinicians look on.”

“While I understand this is their responsibility and they are acting in good faith, it’s confronting. There’s expectation that if anybody wants to have a look at Will’s body then it is their right, not his, to do it,” she says.

As her son grows older, Maggie thinks a lot about his transition into adulthood.

“I’m worried about how he’s going to be able to manage his mental health and his body and how it might betray him.

“He’s not going to be able to, as an adult, have that sort of spontaneous sexual activity that he wants to have with his girlfriend because he’s got to negotiate drainage … or he can’t go out with his mates because he’s got to do a washout,” she says.

Sometimes Maggie and Will have conversations about the future. Heartbreakingly, Will recently asked his Mum: “Do you think that someone will like me even though I’ve got these medical problems? Do you think that I will ever find someone who loves me?”

Until Maggie contacted me, I’d never heard of imperforate anus. In Australia, the stigma associated with the condition means it’s rarely discussed in public.

“It’s a secret club because people my age, we were told: ‘Keep it secret, shut up.’ So you learn to be quiet,” Christi says.

“In our society, everything to do with the toilet is mocked. People burst into fits of laughter at words like poo, wee and fart. But for people born with imperforate anus, our whole identities are forged in s**t.”

The magnitude of Christi’s decision to talk to me for this article — something she describes as “coming out” — rapidly becomes clear. Even her work colleagues don’t know about her condition.

“You’re so ashamed,” she says, “you just don’t tell people.”

“I can’t fully explain the amount of body hatred that you can have,” Christi says as she gestures in the direction of significant post-operative scars across her belly, chest and back, “I would be dead without them but you just feel so ashamed of your scars because they’re so ugly.”

Despite this despair, Christi has been happily married for 19 years and she has a 10-year-old daughter named Emily. (For people with anorectal malformations, their fertility is often affected. So this is an achievement on its own.)

According to Christi, the birth of her daughter marked a turning point in her life.

“Until then, I didn’t think I deserved a baby, I didn’t think I deserved anyone and then I got her and she’s so lovely,” she says with a broad smile.

With regular visits to the psychologist, Christi believes she’s slowly taking a more positive path.

“I’ve started to heal a little bit and realise there’s nothing wrong with me. I was born this way. Understanding there’s no fault attached with this, that’s the biggest thing,” she says.

Christi can see that by speaking out, and putting her weight behind Dr King’s planned clinic she might just be able to prevent future generations of children going through the same experiences as her.

“If we can give them the right medical treatment and the right emotional support, maybe they will have an easier life. Maybe they won’t have the depth of despair and shame that I have had in my life,” she says.

*Names changed to protect privacy

Find out more about Dr King’s work or make a philanthropic donation.

Request to join the Facebook support group for Australian adults and teens born with imperforate anus.

Connect with the Victorian Facebook support group for imperforate anus here and.

If you or someone you love needs emotional support, call Lifeline on 131114 or chat online at www.lifeline.org.au

Ginger Gorman is an award winning print and radio journalist, and a 2016 TEDx Canberra speaker. Follow her on Twitter @GingerGorman