Today for #UroStories we have the inspiring Leigh Weaver 49 from Mobile, Alabama sharing his story and his hints and tips.
Take it away Leigh...
- Can you tell me a little about how you got your urostomy?
I was born with Bladder Exstrophy - my bladder was on the outside of my body. I had my urostomy when I was 18 months old. Growing up with a urostomy felt limited. My mom watched my every move but then again I didn’t understand that I was ‘different’. I wasn’t allowed to play tackle football with the kids in the neighbourhood, I could only play touch football. My mom kept a close eye on me all the time until I was about 12 or so and she finally let me do normal kid stuff. After my parents and I understood that I wasn’t going to end up in the hospital after every little bump, I had a normal childhood. I rode and jumped bikes, had crashes on my go-cart and all that. The only thing I wasn’t allowed to do was take karate…my urologist wouldn’t clear me to take the classes. I have not let my urostomy slow me down! I have been a volunteer firefighter, Emergency Medical Technician (EMT) worked in a steel mill and on a jet aircraft…just have to watch crawling around more than most. The one thing my urostomy had prevented me from doing and it was something I really want to do and that was to join the Army! I took Reserve Officers Training Corp in high school but wasn’t allowed to go into the service.
- 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 is leaks and the cost of supplies. The leaks I deal with as they happen but the cost I just have to grin and bear it.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Don't get frustrated. Think of how much better your life is going to be! Leaks happen......waking up wet happens......there's not a whole lot you can do to prevent it, just don't let it get you down or upset. A few drops of coconut oil in your pouch can prevent it from sticking together from wafer residue. There are plenty of differing opinions out there.....listen to all and then decide which one works best for your situation.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I'm a member of a few Facebook pages and they have helped answer some questions I had.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Unless the person is familiar with ostomies of any sort I have found not many are knowledgeable.
- How do you feel we can raise awareness for urostomies within the general public?
That relies on the individual. There are people, myself included, that have yet to publically admit to having a urostomy because of the "stigma" of being different. It would be helpful if the general public would realize that 99% of us didn't have a choice in getting a urostomy.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I read (sci-fi, fantasy, WWII) and enjoy watch TV.
Thank you, Leigh, for sharing your story and some tips that help you! I found it very interesting reading what it was like growing up as a child with a urostomy and I am sure the readers would feel the same!
Please join us next week when we have the awesome Anita Brown sharing her story!