Hey everyone. I've been reading this forum regarding the same topic. I figured I need to explain my personal situation, and hopefully get some wise/kind words of advice from you.
I'm 22. I was born with right hemiplegia Cerebral Palsy. I'm not wheelchair bound, I don't use any sort of walking aids. Totally "normal."
Here's the situation. I've been getting UTIs since I was 6- always had many "accidents" as a child. No one really knew why, no one ever had answers. I was hospitalized for a kidney infection back in 2008. Finally decided I needed to talk to someone different about it. I've had 2 urodynamics tests done. Found out I have high bladder pressure, low bladder capacity, and kidney reflux (3rd degree).
They have done 2 kidney function tests - about 56/44% is what we found out. So not the greatest, not the worst.
Urologist has suggested self-cathing. I have to lay on the floor in order to cath, and it's just terribly difficult for me, so I've kind of thrown in the towel on that. They have suggested Botox, but my insurance probably won't cover it. I'm not sure if it would be the best solution anyhow.
The last thing she suggested was this bladder augmentation surgery with stoma. Also, the MACE procedure w/ a stoma because I have bowel movements 1x a week (colon is about the size of an apple)- Miralax doesn't seem to do the trick.
I've done a lot of research on it, but I would love to hear personal stories.
I canceled my initial appt (Jan 3, 2011) to discuss this because, in my mind, I really didn't want this... but the urologist personally called me a few weeks ago and told me I should really consider this... My appointment was rescheduled for Jan 24th.
So, my question is to you guys, who have had this done/know anything about it:
Was it worth it?
ANYTHING else you want to add would be very appreciated!