Today's #UroStories we have the lovely and inspiring Lani Chester joining us who is 24 from Haywards Heath, Sussex.
Take it away Lani...
- Can you tell me a little about how you got your urostomy?
I was born with a condition called Spina Bifida which effect your nerves to the bladder and bowel as well as walking. When I was just 4 years old I had a mitrofanoff formed. I was the youngest person to have this done in the UK and I also had an ACE performed at the same time. My surgery in total was 18 hours! The mitrofanoff kept on failing so I had to have this redone but it never worked so I had to have an SPC for a number of years which was hell! I had to have it changed every month under GA for around 6/7 years until I got a urostomy. This was the best thing that could have happened and I even have an ileostomy due to the ACE failing as well. In total, I have had over 76 operations.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I found the toughest thing was worrying about it failing or not draining which it has happened once before.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Try and understand the surgery and speak to as many people with a urostomy as possible. PI am always here if anybody wants to talk to me.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I found joining Facebook groups have helped me understand I am not the only one.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Yes, a lot of doctors where I live think the urostomy is a catheter.
- How do you feel we can raise awareness for urostomies within the general public?
I feel talking to hospitals, local community's friend and family
- When you are having a down day what one thing do you do to keep positive that you find helps?
When I am feeling down I think that there are always other people worse off than myself.
Thank Lani for sharing your story!