Throughout my life, I have learned a lot about many things. I have had quite a few different jobs over the years and I have been able to continue using many of the useful skills I have picked up along the way. To be perfectly honest, I didn’t really enjoy school and couldn’t wait to leave and start earning money; but I went back to college at the age of 45 to learn to be a plumber, and I realised that I did enjoy learning.
Having thought about it, and reflected on what and how I enjoyed learning, it was always been by doing things first hand, not reading about it or listening to people telling me how to do things. From the days when I took cars apart with my dad to when I soldered copper pipes, I have learned best via a practical, hands on approach and learning to manage my stoma has been no different.
I was fortunate to have had a planned surgery so I had the advantage of being able to talk to ostomates, as well as my stoma nurses, about what I could expect. Post-surgery, I believe that my practical approach really helped me cope with the everyday tasks that I was now having to take on. I was encouraged to change my stoma bag for the first time after my surgery and I remember the nurse telling me that I couldn’t go home until I could change the bag competently on my own. That really spurred me on to accomplish it! I have always viewed the whole bag change routine as simply a different way of “going to the toilet” and have never been scared or put off by it. It was sheer relief for me to be able to have a daily toilet routine that didn’t involve pain and distress. Having my stoma has taught me to appreciate what a fantastic creation it actually is and to accept it as something that has given me my life back.
Naturally there were some aspects of life with my stoma that haven’t always gone smoothly. Like many new ostomates, finding out what suited me was very much trial and error; which foods worked and what didn’t: for me, anything with skins on, some legumes, pulses and dried fruit in particular are to be avoided. Very early on I found out the importance of good hydration – having collapsed after a shift in work where I hadn’t taken in enough fluids and found myself in hospital on a drip! Finding the right products is another aspect of stoma life that is a trial and error thing. For example, I soon realised that a one-piece bag was not ideal for me as I couldn’t see clearly enough what was happening when the new bag was put on. Also my skin was getting really sore so I found a two-piece worked far better; it’s easier to only replace the bag rather than take the whole thing off. I also found that the eakin freeseal® was a game-changer as it fills in any uneven skin surface and gives me more wear time for the baseplate. I have had the opportunity to trial several new products and I have learned that there is usually a great solution to all stoma problems so don’t give up.
Of course, being an ostomate requires a fair bit of forward planning if you’re going to on a day out, for example. But I have learned that if you’re prepared in advance it’s not problem at all. By that I mean that if you ensure you have some basic supplies in your car, your work bag, a safe place in work, or as is the case with me, your wife’s handbag, you can feel confident that if you should have an emergency or just routine bag emptying, everything you need is to hand. At this point I would like to express my feelings about the provision of accessible toilets or should I say, lack of them. Having travelled up to North Wales in March, I was very annoyed and a little bemused to find that the accessible toilet in Aberaeron was only open from April to October. But a huge shout out to Morrisons in Aberystwyth for having one of the best accessible toilets I’ve visited. I have learned that if you’re on a road trip, planning also includes allowing for toilet stops along the way.
Having a stoma after years of illness has certainly given me a new outlook on life. I have always celebrated my stoma life as the biggest contrast to what life was like with ulcerative colitis – positivity is the best attribute people can associate me with. I have spoken before about my social media where I strive to spread awareness about living with a stoma, but also to spread the joy of being alive. I have been able to take up new hobbies and interests such as photography and running via Couch to 5K. I have learned not to worry about things that are out of my control and to concentrate on what is really important for me and my family. I belong to the most fantastic network of like-minded people in the Respond ambassador family and have discovered the I have the ability to speak in public, give presentations, appear in podcasts and participate confidently in training events. I never thought I would ever have the opportunity to do any of those things let alone experience success and a real buzz when I know I am making a difference to people.
Overall I think I can say that I have learned many things since having my stoma, but most importantly I would emphasise these points:
- There are worse things in life than living with a stoma; it has been a life saver for me.
- If you are having issues, don’t give up looking for a solution.
- A stoma does not hold you back; it doesn’t limit what goals you want to reach.
- Support is out there – a wonderful community of ostomates can be found on Instagram if you want to connect with any of the Eakin Healthcare and Respond ambassadors, including me of course.
- Staying positive brings about confidence.
It is important and helpful to find out information from professionals, to read, and to talk to other people with stomas, but my message would be find out by doing things for yourself then you will know what suits you and what fits in with your lifestyle. When you discover these things you could always share your experiences to help others, just like I try to do!
