** This thread discusses the content article:
Dad's Continual Burning Issues
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Hello! I'm new to this blog but not new to this disease. My father, 77, was diagnosed in 2007 was T2 invasive BC and had an RC (with prostate and nerve) with neobladder in Aug 2007. Thankfully, the operation was a success and he did very well considering his age and speed of recovery. He managed almost complete continence during the day with slight mishaps during the night and got up to 3 1/2 hours of sleep intervals with an alarm clock! All follow-up checks, tests, scans were very good.
Things changed some time last year when he began to have a strange feeling of urgency or spasm of some sort followed shortly by an intense burning. The burning does not always happen just when urinating. He knows when it is coming on and he describes it as a "fire" sensation that he cannot tolerate. He has been on and off antibiotics of various types for over 1 year and also pyridium. This seems to help but eventually it recurs. He has many urine cultures done and typically they are negative. There have been a few occasions where there is over 100,000 colony (which the urosurgeon describes as over the normal) which triggers a change of antibiotic.
He is very frustrated and upset that the doctor has not been able to find the problem and has checked for strictures, tumors, growths, bacteria, etc and everything is negative. He has continually had microscopic blood in the urine cultures but that has never alarmed the doctors. Just last week he began to urinate blood and this started him on antiobiotic again followed by the pyridium for the burning. We took him to ER when the blood did not stop completely and he spend 5 days in the hospital having more cultures, tests, scans, etc to find no bacteria, no viral infection, no stones, nothing else! He is a mystery to the doctors as the burning comes and goes but usually always followed by thick mucus and small blood clots with the urine. He has been tested for urine flow and proper emptying of the neobladder and it is always perfect.
I need to know if anyone else has had this happen or something similar and a possible diagnosis/solution. He was not instructed to self-cath other than initially following operation for about 3 months. After that, never again. I have read here and other blogs that most patients have to self-cath at least once per week. Could his problem (the intense burning preceeded always by a sense or urgency or other similar feeling that he can't describe completely) be caused by some slight blockage that is not enough to completely close the urine but affecting something else? Could it non-related to any UTI, infection or other bacteria in the urethra, bladder, etc??
HELP....I need some answers as this is taking a toll on my father and his state of mind is quickly deteriorating and affecting his desire to enjoy life and live happy!
Thanks for any help!
Jackie
