Today for #UroStories we have Richard Cornell who is 80 from Cambridge sharing his story! Richard is active on social media by commenting on posts and helps others adjust to their stoma or stomas!
So, take it away Richard...
- Could you tell me a little about how you got your urostomy?
I was diagnosed with Stage 4 bowel cancer in September 2014. I had surgery in October 2014 to have a colostomy bag put in place to make my life easier while I had my radiotherapy and chemotherapy. In March 2015, I had pelvic exenteration surgery, this is where they remove all organs from the pelvic cavity. I had this surgery because they were worried that if they did not remove these organs, there was a chance the cancer would spread. This was when I had the urostomy bag put in place because part of the surgery involves removing the bladder.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I feel that the toughest thing to deal with when living with a urostomy is the worry. The worry that your bag is going to fill up and burst while you are out and about doing your day to day activities. I overcome by making sure I always empty the stoma just before I leave the house. I also like to make sure that wherever I am going I have access to a toilet in case I get worried that it is getting to full. I am always less worried going out and getting on with day to day life when my stoma is empty than if I leave the house with liquid in my stoma. This can sometimes involve not drinking for a period of time before I leave but I always make sure that I stay hydrated when I am out and about & I drink a lot during the periods I am at home to keep hydrated.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
The piece of advice I would give to people who are starting out on this journey is to carry on being the person you were before the surgery. A urostomy does not change the person you are, it just changes the way your body works. I also believe that you should carry on doing your day to day tasks without considering the fact you have a urostomy. If your brain is always on the thought that you have a urostomy then little things like a bit of sweat, will send you into panic and you will worry that you are leaking (trust me, I should know because I have done that many times) which will then stop you in your tracks and you won’t feel like doing anything else for the day. This will make you feel awful the day after because you did not get done what you wanted the day before.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
My biggest support for the first few years of having my urostomy was my family. I also had a lot of support from my local hospital. They have a team of stoma nurses who are always on call if you have any troubles and I always have a checkup with them once a year. I have only recently found a few groups on Facebook which have helped find out new tips and tricks to try and it has allowed me to give to support to others when they are in need.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
I don’t feel that there is a different level of awareness. I always feel that when I have my hospital appointments/doctors’ appointments that they have a look at my urostomy equally as much to my colostomy. I have a yearly appointment with the hospital which just focuses on my urostomy and making sure it is still working okay and that my kidneys are still working okay.
- How do you feel we can raise awareness for urostomies within the general public?
I think we could help raise awareness for urostomies by teaching children who are at school age how a urostomy works and how to deal with one. Stomas are becoming more common, so I think this would help in two ways. It would help prepare them in case they needed to have one later in life and they would not panic as much if they knew about them before having the surgery. I also think it would help because they would know how to deal with and help family members/friends if they had to have stomas.
- When you are having a down day what one thing do you do to keep positive that you find helps?
The main thing I do to keep positive when I am having a bad day is to do the things that I love doing such as gardening. I feel that if you allow yourself to get down and stop doing what you love then you are more likely to have problems.
Thank you Richard so much for taking the time to answer these questions! Your positivity shines through and you have given some brilliant advice!
Join us next week when we have Wilma Gray sharing her story!