Welcome to another #UroStories and today we have a great guy called Jeff Kamm joining us who originally I connected with on twitter when I started my blog. Jeff is 48 from Iowa, USA and has had his stoma for 45 years! I will let Jeff explain what that was like...
- Can you tell me a little about how you got your urostomy?
I was born with a series of birth defects but for today's topic I will talk about bladder exstrophy. My bladder was on the outside of my body when I was born and when I was almost 3 years old I was given an ileal conduit/urostomy.
I had to learn to change my bag by myself at 5 years old. I needed to be able to once I started school because no one else would be able to change the pouch if I leaked at school. I tried not to tell anyone because the kids that found out would either tease, make fun of me or think I was contagious and would not speak to me anymore. Once I got into high school I asked my doctor to write a letter excusing me from gym classes so I didn’t have to change in front of other kids.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
The hardest thing about living with a urostomy for me is the fear of leaks. The best way for me to deal with this fear is by having spare appliances nearby.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
My advice for new ostomates is to find as many support systems as possible. I will explain in detail in the next question.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I think local ostomy groups and support groups on social media can be very helpful. I never knew there were others like me!! Finding others who understand what I have been through and share our experiences has made a tremendous difference to my life.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
I definitely feel there is a lack of understanding of urostomies by medical professionals. I have had to educate many nurses, doctors and ostomy nurses about function and care for my urostomy. However, most have been willing to learn.
- How do you feel we can raise awareness for urostomies within the general public?
I think the best way to raise awareness in a positive way is for blogs like this that show we are everyday people who do everyday things!
- When you are having a down day what one thing do you do to keep positive that you find helps?
For those days when I’m feeling down, I tend to bring myself back up by playing some 80’s rock and reminding myself just how much I have overcome. I also use social media so if you would like to follow me on Facebook – Jeff kamm, Twitter - @makfej and Instagram - jeff_kamm.
Wow, thank you, Jeff, for sharing your story and what it was like going to school with a urostomy. I know you help support a lot of people and spreading awareness on twitter. Please join us next where we have the amazing Heather Taylor joining us!