so sorry to hear of your husband's post radiation problems.
I had lots of stricture problems post surgery, and spent a total of 1/2 year on various catheters, and underwent 6 stricture operations to keep my bladder neck
open. All of them failed, in some cases, my bladder neck scarred closed within a month.
Then, after my surgery failed to stop the cancer, I underwent salvage radiation (39 treatments totally 72 gys of IMRT). Because I had so much stricture problems, the uro and the RO decided it was best to have a Suprapubic catheter in place for the duration of the radiation. So I had the operation to have it installed.
My radiation was administered on a dry bladder, due to the catheter in place. Huge mistake on the part of the RO. My bladder and bladder neck was burned badly by the radiation.
To make a long story short, I had to keep the Suprapubic catheter in place for 51 weeks. I was never able to urinate naturally again, or when it was attempted, the pain was too much to bear.
After nearly a year of hoping for natural healing which never happened, I consented to the Ileal Conduit Surgery, a very major thing. My bladder was bypassed, a conduit (tube) was formed, and I ended up with a stoma (Urostomy). Since then, I urinate from a hole in my side into a plastic bag. It will be this way for the rest of my life.
I was on Ditropan for the bladder spasms for nearly 2 years. It helped some, but never eliminated them, I estimate I have endured 4,000-5,000 bladder spasms. Even though my bladder was bypassed, and non-functional for almost 3 years, I still have bladder spasms.
For the burning, they tried pyridium tablets, again, they helped a little bit, but never eliminated the burning feeling when they had me attempt to urinate naturally.
A Suprapubic catheter is a good solution as opposed to foley catheters if your husband is going to continue to have these issues. As the Suprapubic will exit his body to the left and below his belly button area, and will not pass through this bladder neck or urethra, giving it extra time to heal.
Most uro's will want to change out the tube every 4 weeks or so due to sanitary reasons. The hole can seal closed in as little as 3-5 minutes, so the doctor has to be able to change them out really fast. Because of all my radiation damage to my bladder, these change outs were some of the most painful things I ever underwent, there were times that it took 2 people to hold me down while the doctor pulled out the old tube and put in the new. Hopefully your husband will never have to go through that.
If there is anyway I can help you, I will be glad to. If you want to talk to me or e-mail, just let me know and I will arrange it immediately. I am probably the only person here that remotely underwent anything close to what your husband is experiencing, so I feel for both him, and you for having to watch him suffer.
Hoping his doctors can get to the bottom of it fast. BTW, the Suprapubic catheter was much easier to live with (except for the change outs) on a daily basis, then having a foley catheter coming through his penis irritating him all the time.
My wife is a nurse, and she was allowed to flush out the catheters when they clogged (not hard to do).
Please let me know if I can help you. I absolutely understand.
david in sc
Post Edited (Purgatory) : 6/29/2013 10:08:43 PM (GMT-6)