Permanent nephrostomy tubes due to radiation damage

New to this site.  I am desperate for answers!!!!! According to the doctors patients like me don't exist and basically have been doing my own medical care (awareness) since.  My damage started two months after treatment had an emergency colostomy then two months later my bladder startEd to pass huge blood clots so they went in and sprayed something which damaged my bladder and ended up with bilateral nephrostomy tubes of course I was told this was all temporary and now two years later is obviously permanent.  My major problem is my nephrostomy tubes constant infections and pain from the infections.  Does anyone out there have this issue ?? my other question is after treatment what type of Doctor is best to take care of us ? It is obviously way too much for my Primary . Any suggestions would be great.