Hello! I'm new to this blog but not new to this disease. My dad, 77, had an RC in August 2007 and a good candidate for a Neobladder. His cancer was a T2 that had not gone beyond the muscle into other areas. The surgery was a success and he recovered nicely after his stay of almost 2 weeks in ICU. His home care was good too and soon he was pretty continent during the day with only small accidents during the night (this is because he refuses to use a pad or depends out of pure stubborness and male ego)! He was NOT instructed to continue the self-cath after about 3 months when his test results showed he had good outflow and was emptying the bladder completely at the doctors office. (Don't remenber the name of this test). His follow-up exam and check-ups were increasaed from 1 month to 3 months as a result of the great results. He was even able to get up to 3 1/2 hours of sleep by an alarm to empty the bladder. This lasted for about 1 year and a half before he started having some complications with recurring infections.
About a year ago he began to have what he describes as a sense of urgency that would soon turn into an excrutiating burning sensation as he states "on fire". This prompted the doctor to order urine cultures that would frequently not show any bacteria or infection. Nevertheless, he would get prescribed antibiotics and pyridium to take away the burning. More tests would be done, CT Scans, urine cultures and cystoscopy only to reveal everythng looks good. The urine culture has some times revealed bacteria but not always. There is always traces of blood found in the urine but nothing that has alarmed his PCP nor his urologist. These issues have affected his mental state to the point that he wishes he would have never had the surgery and he has no great desire to continue on the fight. He has pretty much given up on enjoying life and talks about wanting to end his life (which I am sure is the depression setting in).
The reason for my post after all this time is to find someone that has had or is currently having this very same problen and any possible solution or diagnosis. We just had a 5 day stay in the hospital after going in through ER because he began to have blood "visible" in the urine at home. This was followed by intense burning which is too much for him to handle. It intensifies if he does nothing so typically he will start right away on Pyridium and some antibiotic and this does help. The urologist requested that he be taken through ER and admitted so they could run more tests and try to find the problem. All the tests done at the hospital came back negative. The only small item was a slightly enlarged right ureter.
What are his symptoms? He begins to get this urgency or spasm type feeling to go to the bathroom. It could be to defacate or urinate but he says he doesn't know for sure where it is coming from. This begins to escalate to the point where the burning sets in. Typically, if he does a sits-bath (sp??) this is relieved. When he passes some thick skin looking mucous, the burning is reduced. At the hospital he had an occurence of this intense burning and when the doctor requested a foley be put in, within minutes the burning stopped! He then passed some clots of blood and skin/mucous matter and the burning stopped. This is the mystery. The doctor has had no other case like my dad's after performing over 500 of these operations.
HELP! If anyone out there can lend some good advice or solution, it would be greatly appreciated. We don't know what else to do and my dad's desire to live is going down fast. We have considered a 2nd opinion from another expert doctor on these cases. Any recommendations for someone in the South Florida would also be greatly appreciated.
One concerned daughter,