I've been Googling Mitrofanoffs and this forum keeps coming up so I figured I would ask a few questions, if y'all don't mind.

On July 17th of this year I had the surgery to make it able for me to cath through a stoma, my doctor also tightened my bladder neck, made a sling for it and re-implanted my ureters.

Everything was going great, I was sent home with a supra pubic catheter and about 2.5 weeks later I had it removed. This is where my problems started. When we got home from that appointment I went to cath myself and I noticed that I was soaking wet. I had noticed a hole in my incision about 1" below my stoma but my doctor looked at it and we both agreed that it was probably just on the surface, I was told to watch it but that it would probably heal. Come to find out, that hole went all the way to my bladder and I was leaking urine out of it. Fast forward to today and it's got a piece of tissue coming through it (my doctor thinks it may be the fascia (sp?) that he used to make my stoma coming through.) It's not leaking as much now, but it's still leaking a little bit. My doctor wants to give it a chance to close before we resort to more drastic measures like going back to the operating room. For now I'm leaving the catheter in and hooking it to a bag, but it keeps getting clogged and won't work half the time.

Have any of you experienced anything like this? It's such a small hole but when it leaks, it soaks everything.

Also, When my doctor taught me how to cath when he had me do it in front of him as soon as I hit the bottom of my bladder I had a sudden burning feeling, nothing major just a quick sort of sting. That's how I knew I was all the way in. I haven't had that feeling again but maybe 2 or 3 times. I'm really worried that I'm not pushing it in far enough. When I push it in I push it far enough that the catheter starts to bend, I don't know if I'm hitting the valve or if that's the bottom of my bladder. I just don't feel like it's draining properly and I'm so confused.

Occasionally I will leak out of my urethra, is this normal?

I just feel like this is not what I signed up for, I know that sh.t happens but I just feel like I didn't sign up for this. Please tell me it gets better, I hear all of these stories from people that say the mitrofanoff was a life saver and they would never go back but I'm just having a hard time right now and I need some words of encouragement, if you can.

Thank you if you read this entire post and a BIG thank you if you can offer some words of wisdom. Please know it is more than appreciated.