My personal experience started at RAF Bruggen in Germany, when my 27 year old wife, Bobbie, suffered an ectopic pregnancy, followed by cervical cancer the following year. The the Air Force way of dealing with the problem was to take her back to the UK for emergency life threatening surgery, leaving me abroad with two young girls to look after.
Bobbie needed radiation treatment in the UK. Unfortunately, this led to severe damage to her bladder and, we were to find later, to her bowels.
On return to the UK, things seemed fine; however, even then the signs were showing, with bladder control becoming more of an issue. It tears at your heart when your soul mate loses all sense of control - we knew every available toilet on any walk we went on. Finally, the inevitable happened and she was given her first stoma.
What did Bobbie and I know about stomas? Nothing. There was no stoma nurse available so it was basically a ‘get on with it’. Fortunately, Bobbie is very positive and resilient and rode the changes well. With the help of others who knew about subsequent we began to enjoy life again.
As the years progressed, Bobbie began to get more spasms in her abdomen. This meant more surgery and less bowel control. The inevitable happened and Bobbie elected for a colostomy as the only way to control things and get life back to normal.
I had nothing but admiration for how Bobbie coped with the issue but this was the straw that broke the camel’s back for me. I broke down in my. One day, one comment, that’s all it took and after all those years I couldn’t cope! Then, as fate often does, it lent a hand. In walked our cleaner Inge, a Belgian lady, larger than life in character with the most outrageous sense of. Apart from the initial “sorry”, she stayed and talked.
Apparently her father had two stomas, so she had a good insight to life with them. She was fabulous, to this day my special guardian angel. She even wanted to know if she could come and clean my house or do the washing to help!
In the mid ’80s the goal was to survive, then see the children grow and now the grand-children. We have maintained a full and active life throughout and still ski and play golf regularly, walk, swim, take holidays and take a good bashing from the grand-children. We also wake up to a cuddle every morning now I have retired; my wife is my life and life is good!
The big wake-up call is that partners are often forgotten. Regardless of how long something has been around, how simple or complicated a situation, knowledge is power and that power breeds strength. We are here as the rock for our loved ones to stand on.
However, while worrying about surgery and the change to their lives, our partners are also concerned about the effect on ‘our’ lives as well. They love us no less because of changes to themselves; just worry more how those changes reflect on us. The earlier lifestyle changes can be discussed openly the better. Not all partners will want to know, but from my experience I would have certainly benefitted from open dialogue, not just the once but throughout the years. The more partners who can ‘be there’ for new ostomates can only be a good thing. I for one will always be available.