In this blog article we introduce you to another of our patients, Lynne, who asked her parents for ostomy surgery for her 16th birthday having had incontinence issues throughout her childhood.
“I was born with Spina Bifida, hydrocephalus, a dislocated hip and Arnold Chiari malformation. The latter I didn’t discover until in my late 40s after having scans to discover the root cause of recurring headaches and neck pain. The extent of my disability meant that I was unable to walk until much later than an able-bodied child and I was incontinent. At that time nobody really knew what other physical or mental hurdles I and my parents would have to face then or later, but as most people with more severe spina bifida will know this meant numerous surgeries.
Heading to school
Fast forward 5 years to January 1970, I was still in nappies and after my parents had battled hard to get me into mainstream school I went off to a boarding ‘special school’ for the disabled. I got on with school and did my best and was introduced to many people with many and varied disabilities. Apparently, I was always inquisitive especially about other people and this meant I watched and leaned a lot about all aspects of disability. In my early school years, I had further surgeries on my useless legs and a couple to try to lessen the impact of my bladder incontinence. I had a bladder implant that needed an external disc and battery pack attached to the exact same spot as where the implant had been surgically placed. The idea of this was that when the battery pack was switched on it would close the neck of the bladder and would only release it when I went to the toilet and switched the battery pack off. My parents were told it would take a bit of training on my part and there were no long-term side effects once I recovered from surgery. So post-op I went home and back to school. Things seemed okay for a while then I started getting abdominal pain for no apparent reason. After it didn’t improve, I had x-rays taken only to discover the implant had snapped clean in two despite my parents being told it was unbreakable in day to day life. I had surgery to remove the disc and a replacement was fitted. Once home, life carried on as before until yet again I developed abdominal pain and it was discovered the implant had broken again. I have more surgery to have it but half had been swallowed up by scar tissue, so the surgeon decided to leave it there (which it still is to this day).
Back to Square 1
I was 8 or 9 by this time and was curious about what other pupils at my school were using. I didn’t know what they were at that point, but I discovered later they were catheters and urostomy pouches (bags). My parents had been informed of the options available and decided the implant sounded the best of what was available. The surgery was a lot less complicated for that than the urinary diversion. However, after the second implant broke my parents decided enough was enough and it was back to nappies and plastic pants.
About 18 months later I started saying I didn’t want to be in nappies. Mum and Dad dragged me back to hospital to see what options were available and that year I tried catheters and a new gadget that to this day I cannot recall what it was called. It was a variant to a catheter but it sat at the neck of the bladder with what I can only describe as small rounded ears. It was meant to cover and close the bladder opening. Whilst trying both out I became seriously ill and at that point I was diagnosed as being latex allergic. This meant neither option was for me as they were both latex based. So back to square one it was, with me growing more unwell and angrier by the day at being prodded and poked by all and sundry in the medical profession.
Starting the journey to a Urostomy
Aged 13 I decided (but kept it to myself at that point) that I wanted a bag (urostomy). I had started noticing boys by this stage so was obviously growing up and consequently being more aware of other life/body changes. I had started attending a PHAB (physically handicapped and able-bodied) youth club and it was here I started my trek to achieving what I wanted. One day I was enjoying myself at the club when I realised I had wet through my nappy and to my clothes. I was distraught and decided enough was enough. I went back to school until the holidays and resolved to talk to my Mum about my nappy situation.
When I did so, I learned they had been told the urostomy had been a viable all along and I was furious with Mum and Dad for not agreeing to the urinary diversion years before. I didn’t take on board that they had done what they thought was the least intrusive thing medically because they believed I had been through more than enough surgeries in my life already. I blamed them for my still being in nappies aged 14 and I was vile to them that holiday. When I went back to school I told one of the care staff what had gone on at home, as she was one of the staff I liked most, and I believed she would help me get what I wanted. I was mistaken as she went to one of the matrons who I suspect spoke to Mum and Dad. Sadly, the saga went on longer than I hoped and back and forth I went from home to school like a boomerang, all the time trying and as I saw it, failing, to convince anyone.
During the summer of 1980, Mum, Dad and I went to see a consultant at East Birmingham Hospital as it was called then. I felt sure Mum and Dad were coming around to the idea, but it transpired they were going through the motions and hoping for some reason that it would not be feasible. With hindsight, I know they believed they were protecting me. However, I was put on the waiting list and that was that for a short time. Several months later, my parents received a letter with a date for my admission on 19 January 1981, so not only had the consultant listened to my parents but he had listened to me! I was over the moon that I would have my surgery before my 16th birthday.
The Consent Form Conundrum
Little did I know I would still have a battle on my hands regarding the signing of the consent form. My parents took me to the hospital and on admission they were presented with the consent form. They couldn’t decide who should sign (I guess because they were both scared) and were bickering about it. I got angry at this point and shouted at them “Bloody hell will one of you sign the damn thing? Or I will do it myself”. I still wasn’t quite 16 so it would have been illegal for me to sign. Anyway, they were both stunned, they stared at one another and at me, I snatched the pen off Mum and went to sign it and finally they realised I was serious and set on having the surgery. Almost in slow motion (well that’s how it felt) Mum took the pen, signed the form and I finally got what I wanted.
I had to be in hospital 2 weeks before surgery to have a regime of medicine to totally clear my bowel before surgery could go ahead. I truly hope that in the 21st century this medication has been replaced by something more palatable. The medicine was called Vivanex, it was mixed as a drink and was vile. I can to this day remember how nauseous it made me as well as doing what it was meant to do!
Two weeks later, still before my 16th birthday, I had the surgery. Even now, 37 years later I still consider this my best birthday present. I was eventually discharged just before my 16th birthday on top of the world.
Yes, I do have some issues with it, I suffer from leaks and sore skin on occasion but there is no way that I regret the decision. For me it was and still is the most liberating thing ever. I want to thanks my Mum and Dad for putting their worries to one side. I know they felt they were protecting me by not having put me under the knife for what they considered an unnecessary operation but to me it was vital and I truly believe it has changed my life for the better.
I am aware things have changed dramatically since then in regards to involving children in decisions to do with their own health and well-being. But for parents, as hard as it must be when having to put your child into medical hands for what you may consider too big a hurdle for your child to cope with, try to think long-term from your child’s perspective and the ultimate outcome of the impending surgery. Talk to your child about what is going on in a way they will understand and try to listen to what they want too.”
Published: 28th February 2019