Shaun's Story

Within hours of my birth, I had been seen by three consultants. My parents were informed that I had serious complications, and I was taken to the Paediatric Intensive Care Unit (PICU), where I was baptised “just in case.”

I was born with a high imperforate anus, meaning I had no anal opening, as well as a connection between my bowel and urethra that allowed stool to enter my bladder. 
Shortly after birth, surgeons created a temporary stoma, and I later underwent a Posterior Sagittal Anorectoplasty (PSARP) to repair the malformation. 
My early months were spent largely in intensive care with very limited physical contact. This had a huge emotional impact on my parents, as they were only allowed occasional supervised contact during washes because of the number of tubes and wires attached to me.

As I grew older, it was hoped that I would eventually develop bowel and bladder control. However, by the age of seven, I was still in nappies, which made school incredibly difficult. It was later discovered that the nerves at the base of my spine are tangled, leaving me permanently incontinent. 
Because of this, my family and I faced a difficult decision: either continue as I was or undergo surgery for a permanent colostomy and a Mitrofanoff, a small stoma on the abdomen through which a catheter can be passed to empty the bladder. It was a big operation, and both procedures where to be completed together. However, I chose to have the operation, although it was a decision I struggled with throughout my adolescent years. 
The surgery improved some aspects of daily life, but recovery was difficult. I missed nearly a year of school because of the operations, along with additional time for follow-up procedures and hospital appointments.

Secondary school was especially challenging. I had always known I was different, but during those years I truly understood how much. I struggled with depression and went through a very dark period, particularly because of stoma leaks and being unable to take part in many normal childhood activities. Despite this, I was fortunate to find a close friend I could be completely open with, and that support helped me immensely. 
At the age of 16, I asked my consultant to explore whether advances in medical technology and surgical techniques might make it possible to reverse my colostomy. After many invasive and uncomfortable tests and procedures, it was confirmed that a reversal would be very unlikely to succeed.

Years later, at the age of 30, after ongoing problems with the lower end of my remaining bowel, I was referred to St. Mark’s Hospital at Central Middlesex Hospital in London. There, I underwent a panproctocolectomy, surgery to remove the entire colon, rectum, and anus. 
My condition still affects my day-to-day life, but I have learned how to manage it. I am now far more open about my experiences, whereas as a teenager I never would have dared to “go public.”