THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2020 SO THERE IS NO UPDATE.

Surgery followed by adjunct radiation. Currently experience rectal and urinary bleeding. Both result in blood clots that are difficult to pass. Have been catheterized 30+ times, now I self catheterize. Have gone through three hyperbaric oxygen regimes - first 40 treatments, second 33 treatments, third 60 treatments. Still suffering.

My first post would show I had surgery, then radiation. The radiation left me with very detrimental side affects. After over 100 hyperbaric oxygen treatments I decided to go back to Loma Linda Hospital and see a urologist there. What a find. Dr Ko knew what I was going through before I ever told him. He has seen 100's of men who are 10 and 20 years post radiation. He prescribed Elmiron, which cleared up my bleeding in about 6 weeks, and has kept it under control for almost 2 years. I've had a few instances of bleeding, and still have mild incontinence, but things are better.

Unfortunately, the positive results from Elmiron did not last. Bleeding has returned as well as the need to catheterize when the blood clots up. The frequent catheterizing has led to incontinence so I now wear diapers and pads. The local urologist suggested I have my bladder removed, but a second consultation at UCSF the doctor recommended otherwise. Well, at least I am alive and enjoying my three Granddaughters.

My quality of life is suffering from the radiation treatment. I almost died in November from loss of blood through my radiation damaged bladder. I had complete bladder failure, permanent loss of 10%, blood sepsis and brain encephalitis. I continue to suffer with brain fog and dizziness and have to walk with a cane and cannot drive. I have muscle tremors in my arms and hands. I don't recommend radiation treatment for anybody.

The radiation treatment has been a nightmare. Because of it I suffer from rectal and bladder bleeding. I'm told I will most likely end up with bladder cancer. The blood in the bladder coagulates and blocks the passage of urine, which backs up to the kidneys and has twice caused kidney failure, the last time almost fatal.

The Loma Linda urologists admits they gave me too much radiation, but it was the prescribed amount at that time. My quality of life is sharply downgraded because of this. I have no ability to have sex (last time February 2002) and will not have sex again in my life. Had the doctors told me this ahead of time I still would have chosen to live despite the side effects.

Paul's e-mail address is: paul_b_white AT yahoo.com (replace "AT" with "@")

NOTE: Paul has not updated his story for more than 15 months, so you may not receive any response from him.