Welcome back to #UroStories and today we have the lovely and supportive Ros, 50 from Suffolk sharing her story...
- Hi Ros, can you tell me a little about how you got your urostomy?
I ended up with a urostomy after having my bladder removed due to bladder cancer. Before this I had never heard of a urostomy before.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
The toughest thing to deal with at the beginning is the operation and recovery and then slowly getting back to normal. Also, I found it takes a while to find a pouch that suits because leaking is probably the worst. Over time you learn to adapt and learn signs of when a leak is about to start.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Advice for a newbie is to take it easy, contact their stoma nurse as much as they need to, build up confidence with your urostomy and don’t let it get in the way of your life.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
The last place I thought of looking once I knew I had bladder cancer and would need a urostomy was Facebook. It was a couple of months after my operation when I searched and wow, was I glad I did because before that I thought it was just me. Then I found a few bladder cancer groups. I sat in the background mostly until Fight Bladder Cancer Group was set up and changed my life! Without this group, I would not have challenged myself. I raise awareness and fundraise for the charity and recently I even did a skydive with The Red Devils. If I never had bladder cancer I would never have done this. Online support is amazing and best of all I can help someone else through it all.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Healthcare Professionals unless on the urology ward are not very well trained and educated on urostomies.
- How do you feel we can raise awareness for urostomies within the general public?
Raising awareness – I like the t-shirt 'This is where my ostomy is with' with an arrow pointing to it! I never heard of a urostomy until I needed one.
- When you are having a down day what one thing do you do to keep positive that you find helps?
We all get down days but that's where online support is good, you never feel alone. I knit every day if possible for charity and this gives me a positive feeling!
Wow, thank you so much, Ros, for sharing your story! You are an amazing person and I know you have helped many many people. It is an honour to know you!