Could we have a conversation about incontience?

I had a catheter in for over 2 months myself, post surgery, why did your husband need to have one in for so long? Mine had to do with difficulties with the bladder neck to urethra connection, and I needed much more healing time.

Yes, I did, and still have lots of problems with bladder spasms. Since your husband still has a working bladder (mine had to be by-passed), the best med for the spasms is Ditropan. It's a cheap generic med that works fairly well for most men.

Most urologists will not want him on it for long, if prescribed, because it can make the bladder "lazy", and make it even harder to learn to be continent again. But it does work well for most common bladder spasms.

For many men, continence returns in small steps. Is he doing the kegal exercises that most do?
If not, its important that he learn how to do them, and to do them on a regular basis.

Not a diabetic, so can't answer that part of your post.

David in SC

P.S. It will take some more patience in your husband's case, its only been 4 1/2 months ago, some don't see great results til 6 months to a year out. It's very different person by person.

Don't give up!

Sorry, you did ask if anyone had severe bladder spasms, so I thought you were looking for a solution.

Yeah, that bladder neck connection area is considered one of the most complex and problematic parts of any prostate removal surgery. I had open surgery, and it was still difficult for my surgeon, because, as it was stated in my surgical report, "a deep and narrow prostate bed", the surgeon had a difficult time doing anything on the right side of me. Because of this, my right nerve bundle was left (but noted damaged), and because of this, I ended up with a positive margin, which for me, quickly turned to recurrence of the cancer.

And I can honestly say, I never had incontinence issues, but not in a good way. I had endless stricture problems, I had the opposite problem, I couldn't go on my own due to excessive scarring, it took 6 other ops in an attempt to keep my bladder neck open. None of them worked, so I spent a total of 1 1/2 years on 21 different catheters.

Hopefully your husband will see small steps, but steady steps, in getting dry. I hope so.

And when you see his doctor, hope you take notes with you, I find that very important, so that you get all your questions answered, and less prone to get nervous and forget something important.

let us know how he is doing.

david

The first 6 months of catheter time was broken into being on different ones for 1-3 weeks at the time. That was bad enough. The worse was one that had to be put in at the ER. The ER nurses refused to listen to my Uro, and tried to insert the wrong size and type. He was very angry about this as they could have serious damaged me.

After I had Salvage Radiation for my failed surgery, I had a Suprapubic catheter in place for 51 consecutive weeks, until I had my bladder by-pass surgery. The Suprapubic type do not exit the penis as does a foley catheter. They have to be surgically inserted, and exited to the left of my belly button, but lower down. Other than that, they work the same way as a regular catheter.

The worse part, because of all the radiation damage that was done to me, it was very painful for my doctor to change out the catheters every 4 weeks for sanitary reasons. He only had 2-3 minutes to swap them out, because the hole in my bladder would try to close up, that fast. The bladder is one of the most powerful muscles in the human body. Sometimes, it took 2 people to hold me down when he swapped out the catheters, they felt just like someone twisting a hot, ragged knife into me, it would hurt so bad, but it had to be done. At the end of those 51 weeks, I was pretty traumatized by the whole thing, and was glad to have my bladder by-passed.

Sorry to hear about you losing a family member to cancer, no such thing as a good cancer in my books.

I hope your husband's doctor is right on all those points, and that he has a great recovery ahead of him.

David

Purg,

I saw the pain my hubby went through and I can tell you went through so much more than he. I always wonder why some have to endure so much. Do know that your life stories touch my heart and I am grateful for the work you do on this forum. I asked my hubby's doctor to share with his patients this forum- he said he had and will.

In the six months since surgery I have gone from several pads a day to one pad a day. From nearly 16 ounces of urine, by weight, to about .2 ounces. Two months after surgery Uro put me on 4 mg Toviaz and I noticed a near immediate decrease in leakage which allowed me to go to one pad. At last visit, a couple of weeks ago, Uro said he was pleased with progress and continued the Toviaz and believed I should be totally continent within a year if not sooner. Most times I don't even know I have leaked but it is noticeable when I sneeze or cough. I have tried my best to "hold it" when I sneeze but I haven't gotten that good at it yet. And if you have ever heard the adage, "don't trust a fart" well for me that also includes possible urine leakage as well. Still having trouble telling those muscles I want to pass gas, not pee! I did have bladder spasms the first couple of months....nothing like Purg however. Don't have diabetes so I can't offer any advice.

MrsJC,

Your husband might want to ask his doctor about biofeedback/pelvic floor physical therapy. It is helpful in a lot of cases. Most of the value comes from coaching a man on his exercises to strengthen the muscles that support the bladder and the urethra. Some of the muscles he used to hold back his urine before surgery are gone now and there is a learning process to finding out what still works. The biofeedback training can tell him when he is doing things right.

Questioanoutit,
We listen around here and I am a good listener, I can understand the need to vent after 3 years. Please promise you will seek help and evaluate the dangers and make a wise and informed decision. We care about you here. These guys on the forum can help answer your questions from personal experiences.

Mrs clamp, I'm no expert but just from the experiences I have read about, 18 weeks is where I would start to be concerned. It might still be a bit early to prognosticate one way or the other if he will eventually get where he wants to be but it might be time to "up the game". As others have pointed out, pelvic floor strengthening could be considered. I and others have gone to physical therapist's that are trained in treating incontinence. If kegels will fix him, they will probably have a good chance of improvement and if when prescribed by your uro it should be covered by insurance, at least for a while. I my case the therapist thoroughly trained me in kegels in many positions, abdominal exercises, electro- stim ( don't ask!!) accompanied by ocean sounds to, what? relax me, then the bio feedback. When done he will for sure be doing the kegels right.