A Secret Life – Surviving A Rare Congenital Condition (Greg Ryan)

This week, we have an incredible blog post from Greg Ryan, a man born 53 years ago with a congenital condition that should have killed him, had it not been for the incredible skill of his surgeons at the Royal Children’s Hospital, Melbourne, Australia.

Nevertheless, while the surgery gave him a chance at life, Greg was to grow up in a constant battle against isolation, self-harm and anxiety, driven by the lack of awareness, information and medical support.

Fast forward to the future, and Greg is now an international advocate for anorectal malformation (ARM, also known as imperforate anus, IA). Just recently, his condition was discussed in the Australian Senate at Parliament house – the first recognition of IA/ARM in any Parliament in the world.

He is also the founder of the ONE in 5000 Foundation, and published author of his book “A Secret Life – Surviving A Rare Congenital Condition” – available for purchase in both paperback and eBook formats.

Proceeds of the sale of the book will be distributed to his non-profit organisation, the ONE in 5000 Foundation, which aims to educate, connect and support families, as well as assist medical research. For more information, check out the website and Facebook page, or follow him on Twitter at @asecretlife_gregryan.

Read his blog post below for a brief glimpse into Greg’s incredible, emotional and uplifting journey.

“At various times most of us have had that uncomfortable feeling knowing something is not right with your stomach and we must race to the toilet. But for me it takes on a different meaning, as I was born with a birth defect called “Imperforate Anus” (IA), which is also known as “Anorectal Malformation” (ARM). Unknown by 99.9% of the general population, this congenital anomaly occurs at an incidence rate of ONE in 5000 births in western countries and about double that in other parts of the world. In lay terms, in my case, I was born without an anal opening or any sphincter muscles or nerve control in my rectum/anal area. Coupled with that I have associated major urological issues and that combination means I have had many surgeries as well as intrusive procedures (Rectal Enemas, Bowel Washouts etc.) from the day I was born to as recently as 18 months ago. Unfortunately, due to my dysfunctional bowel and rectum/anal area, it means I must deal with the uncertainty of what may occur with my bowels every single day of my life.

I learnt to cope with being known as the smelly kid at school; on the football field with my best-mates by using the strategy of rubbing dirt onto the back of my shorts, so no-one would notice the inevitable soiling patch; at high school I wore my school jumper tightly around my waist, no matter the weather, to camouflage the stain on my school pants. Worst, when all my friends had girlfriends I was too petrified to even think of having a relationship because I had no faith in my bodily functions. As an adult my fear of inhospitable places became soul destroying.  A working environment or a café or a friend’s place with no ready access to a toilet filled me with terror. Worst of all was the fear of incontinence in a moment of intimacy. This eventually led to me having a mental breakdown in my mid 30’s.

The ARM collection of anomalies is rare and because of its affects it was something that I could not discuss due to the stigma attached to toilet habits and hygiene issues. Even though we can’t live without our bowels the last thing anyone wants to talk about, or listen to, is someone’s bowel habits. It was certainly one thing I didn’t want in any conversation! So, I chose to keep my condition as “my secret” to anyone other than my parents and my doctors, and not surprisingly I thought I was the only person with this condition. The thought that anyone would know I had an issue which was so embarrassing, and humiliating was too much for me to bear so I learnt to live my life doing everything I could to protect “my secret” from being revealed.

The secret however eventually came at a cost physically and emotionally. I lived in a state of constant anxiety. I was petrified that someone could smell me because I had had an involuntary bowel accident due to faecal incontinence or had flatulence over which I had no control. More dramatically, I sometimes felt a piece of “stool” in my rectum which I had no idea was coming. (Because I had no muscle control or feeling in my rectum.)

The only place I felt safe was on a toilet. Here I don’t need to be on guard, to feel scared or anxious, to feel ashamed or embarrassed. I can be myself and not worry about “my secret”. But after I leave the toilet, the battle continues because I must contend with anal leakage due to not having any muscle control to prevent the normal bodily function of mucous. The mucous causes leakage which in turn causes soiling. So, I wear a female panty liner to protect myself from any soiling patch being evident. Then on occasions I have to treat the nappy rash created by the acidic nature of the mucous leakage by using cream.

Everyone born with IA/ARM, and there are about 2 million of us alive today, along with our parents who did not have a choice about our fate, have to adapt and deal with the physical and mental consequences of this life long condition every day. This is primarily in silence but in 2014, I was incredibly fortunate to find small online support groups catering for individuals born with IA/ARM and their families and after 50 years I realised that I wasn’t alone anymore.

By 2017, I decided to “come out” publicly by writing a book which I naturally called “A Secret Life – Surviving a Rare Congenital Condition”. My purpose was to alert everyone to the condition, encourage a dialogue and arrange better support for all IA/ARM sufferers across the world. All proceeds of the book sale go to a not-for-profit I established called “ONE in 5000 Foundation”.

There has been worldwide interest in the book and I am now talking to thousands of others carrying this burden, along with supporting parents and educating the medical fraternity of the physical and mental issues connected to the condition, which for so long has been viewed as a “paediatric only” medical issue, thus a feeling of abandonment after leaving Paediatric care with no transitional programs available to adult colorectal care. I have been fortunate to be a keynote speaker at paediatric conferences across the world over last two years to highlight the issues I have detailed and received a very positive response.

I don’t have to live with the burden of my secret” now, but still must contend with living with the physical and mental health challenges of my condition, But, it’s a truly wonderful feeling that I now can talk openly and contribute to spreading awareness without that fear of me being exposed.”

Greg Ryan
Founder of ONE in 5000 Foundation
Author of ‘A Secret Life’