Thank you for responding. My dad had his RC in Aug 2007...just made 3 years. The burning started a little over 1 year ago. He has been on and off antibiotics for about 2 years for one reason or another. It seems as though the doctors are quick to prescribe those antibiotics when the colonization reaches over 100,000. We have been to the ER 3 times this year with severe burning that he has not been able to manage. The rest of the time he has mild burning which he handles with Tylenol Codeine (which I wish he didn't have to take so often!). After we went for a 3rd opinion in July he had the antibiotic shots and he got much better for about 2 weeks. He was well enough to go to a beach vacation and went swimming in the ocean and had a great time. Right after that...the burning started again and has been back with a vengeance since. Could the salt water have aggravated things?? I wonder....
The original surgeon did think that it was some type of nerve damage but that is not confirmed with any test so he prescribed Neurontin..that was back in January. He got better from the burning but his mind started to deteriorate so we stopped it........a major side effect from that drug.
He is going to see a Pain Management team on Tuesday to check on the nerves from the spine that may be triggering this burning. We don't know what else to do.......we are overwhelmed by all this and have run into so many walls. It's so hard to keep him positive and motivated to keep searching for a solution.
Do you think I should seek a infectious disease doctor? What is nerve specialist doctor? Is that the same as the Pain Management group?
Thank you for your feedback....I appreciate anything you can offer that might help. My dad is 78 and other than this issue has no other major medical condition. I feel terrible that my dad is having to live like this and is so depressed about it. He is running out of steam.
I'm not sure if this could be related at all but I had burning that felt like urethral prior to getting my RC. My urologist checked everything out and thought that it was referred pain. That can happen with the urethra.
One thing you mentioned about this on the other thread was that it seemed to be better after he was getting antibiotic injections for a while. That may be a clue. It sure sounds like they need to do additional cultures to see if he hasn't wound up with some sort of antibiotic resistant bug.
When did the burning start and how long has it lasted (except for that two week break where it seemed liket the antibiotics worked)? Have they been doing white blood cell count blood tests?
After an RC, just because they can grow something in culture dish, doesn't necessarily mean there is an infection. The intestine used to create the new bladder is not a bladder. Any time I get tested it looks like world war 3 is going on in my urine but there is a difference between colonization and infection.
If it was immediately after the RC surgery, it may be nerve damage somewhere else that is feeling like it is urethral pain. There is often some nerve damage when removing lymph nodes in the RC surgery. I had pins and needles and numbness with occasional burning on the inside of my upper thigh from the lymph node removal. Lasted a long time, but clearly was not as severe as you father has. My way just a nuisance for the most part. It's a a year and 10 months since my surgery and it's still a bit numb there.
If infection gets rules out, you might want to see about nerves. It could be this is beyond a urologist (even top surgeons at this point) and a specialist in infection followed by a nerve specialist. Just thought. I'm no expert in this stuff but it might be worth checking out.
I previously posted about my Dad's Continual Burning Issues but have not found anyone with the same or similar symptoms. The Uro's have not been succesful in finding the cause of the burning flare-ups. Ocasionally he does get a nasty bacteria and takes some Levanquin/Bactrin/Cipro etc and that subsides but the burning recurs. To clarify....the burning is not when he urinates....it is constant (while sitting, standing, walking, sleeping, etc). I am looking for any answers/solutions/suggestios...whatever...to help my dad. He is losing his will to live and other than this nasty burning problem.....he is in good health. The bladder seems to be working properly with no issues.
PLEASE HELP.....I need someone out there that has had this or is going through this now.