Reason for my continued incontinence: "Stricture"

I'm interested in Jefnef's comments here that a stricture is keeping the sphincter from completely closing in its relaxed state.

A recent udodynamic study concluded that I have "possible bladder neck stenosis". This was based upon an obstruction when attempting to insert the catheter, and also on my weak urine flow. I have suspected for some time that my lack of progress on regaining continence is related to the fact that urine came out of the drain tube following surgery rather than out of the catheter. Clearly there was a leak at the anastimosis, and it took several days for them to control it. I suspect this is the cause of scaring.

My urologist/surgeon says that this could not affect the operation of the sphincter because they are too far apart. I am sceptical about this conclusion, as something has to be causing me to be incontinent (8 pads a day) after nearly 8 months, and if not this, then what?

I am very interested in any responses to Jefnef's question.

Berb

  Berb, KW, Jeffnef, Gene, and others here with extended incontinence,

  I admire your efforts and ability to help others on this topic.

Jeffnef,  Concerning going back to work fully incontinent:
I am a Produce manger in a large grocery store and "manage" 10 to 20 pallets of 10 to 60 pound boxes every day.  I went back to work at Week 4 fully incontinent as I worked on my feet 12+ hours a day around customers and co-workers that never knew anything except that I had "some kind of hernia surgery that I don't want to talk about" and stooped and lifted (light things at first) and remained fully incontinent through week 10 and more.

My main strategy was to hydrate (1/2 gallon+ liquid) after work before bedtime and then limit fluids throughout the day to minimize pad change.  Then, the first 4+ hours at work, I would change out my pad every two hours and then about every four hours as I ran lower on fluids.
My "pad" was actually two pads:  The men's brief liner that holds 8 ounces and then at 90 degrees, under the penis, I would wear a womens incontinence 12 ounce liner that was very easy to switch out.  If I remembered to switch the female liner out after two hours, I could leave the men's liner all day as it would not get wet.
If I got thirsty and drank a Sprite, I would soon change out the women's liner again....
To be honest, I would forget to change out the women's liner soon enough at least once a day as I dealt with the demands of business and people.  I carried a couple of both kinds of pads in my pockets.

My main advice is to use a barrier cream daily (e.g., petroleum jelly) and a fungicide ointment (I found generic Tinactin effective & cheap.) weekly.  Also, every night I would dust the entire area with baby powder (or fungicide Tinactin powder) and sleep nude on a disposable incontinence sheet/pad.

A comment about the powder and sleeping (or watching TV) nude:  The sensation of dryness was unbelievably comforting to me when I was totally incontinent - and for six+ weeks had no reason to believe it would not last forever.

While most of us only have an inkling of your battle, still, let us encourage you to be strong and like Berb, KW, and Gene - don't let it keep you from living the life you choose.
Please express the victories you have by smiling at your friends - especially if they have no clue that a lot of us are still "in diapers..." for the long-haul.

Sincerely,

C^Cedar
ICTHUS

Jeffnet....

I think you are only #3 whom on the forum I have heard of having a stricture.  I am #1.  It is indeed the "pits".  I had my stricture dialated... stretched if you please.  I am approaching month # 7 for post-op radical open surgery.  Every time I think I may be getting better, I have a terrible setback.  I would like to blame my surgeon for a sloppy job, but I am not sure that is correct to do.  I may be just one of those guys who, regardless as to who cut on me, I would be incontinent.  We must do our very best in trying to gain continence and face any "music" when the time comes to do something else.  I get very frustrated until I read of someone else who is much worse off than I.  I just read one of those posts and I feel ashamed for whinning over peeing in my pad all the time.  At least I pee and at least I have a pad.  I am still praying that someday I can gain control.  I pray the same for you.

Gene

Oh, one more thing, Gene. I asked my local uro doc about the bio feedback, and he said that I had very strong sphincter muscles, and he didn't think the biofeedback would help me much.

Jefnet & Puget,

Puget, I think you are right that some of these surgeons conveniently forget to tell you "the rest of the story".  That was my experience with my former uro/surgeon.  It was after the fact of my dialation that I discovered on my own the increased incontinence and also the fact that strictures often come back after they are removed.  But, Puget, will the scar tissue contineue to grow and do you suppose it will have to be removed?  Couldn't it completely block your urine flow?  I would like to know the answer to this question.  So what the stream is slowed... if it does not stop completely, isn't a slow stream better than a constant leak?  In my case, something had to be done with my stricture.  It suffered irritation and subsequent bleeding... so I didn't have a choice, ... I think.

Gene <><

Hi Gene and Puget,

Sorry for the long delay in posting. I visited another doc today for another opinion. He seemed to think that I should try dilation and see what happens. He admitted there was a risk of making the incontinence worse, but there was an equal chance of the dilation improving my incontinence. I asked him if there was any way to evaluate the risk, and he said, "not really."

He said that even with a cystoscope there are so many anatomical variables that it is almost impossible to know what is really going on or causing the incontinence. He said that if it were him he would try dilation, if that didn't work, then find a doctor who specialized in strictures and possibly have surgery to correct it. Worse case scenario he said, would be to implant an artificial sphincter.

If I had a weak stream, but was holding my water, I would be happy about it. As it is, I'm constantly dripping and I don't feel that doing nothing is an option.

I have an appointment with my surgeon on Oct. 17th. He's going to scope me and discuss with me whether or not dilation is an appropriate course of action at that time. I'll report back.

This is not fun. I feel like I'm just along for the ride.

Hey ~ Jefner...

I can hear the deep sigh in your message.  And I'm glad to see you posting... Stay closer okay!!!   I have some thoughts going through my mind and I'll get them down on paper in the next few days.  I have some questions... that may have already been asked and answered. 

I'll back track to some of the postings by you,

KW, Gene6163,  Puget,  Berb, and Hagrid... before I post again.

We really need to keep all of "THESE POSTINGS" together.  I've been working on it and will check with you guys before I post it.

Keeping you "all" extra close during this time.  In Friendship ~ Lee & Buddy

Jefnef, glad you checked back with us. I'm sorry you're still leaking. If I faced that, I might well make the same decision you are considering and your doctor is recommending. It could get worse, but right now it's not getting better. I dunno. It's a tough choice. Since you started your thread, Grover has also shared his experience. His post is just a few lines below yours. We are a very small minority, and it's good to make contact with guys who are facing the same problems. Stay in touch. My thoughts are with you -- and Grover, kw and Gene and all those who face continuing problems with incontinence and/or slow stream. I try to remember the good stuff -- no more cancer!

Hagrid, I have been a member of this forum since May of 2006. I am at 16 months now and am still having severe

incontinence problems. I had radical prostate surgery with Divinci Robotics in Memphis, Tn. and my life has been down hill ever since. I also have E.D. problems. I say problems, as there is nothing there. I have tried Viagra, Cialis, and all the other meds out there with no success,as they had to take my right nerves, due to the cancer. I am scheduled November 19th to have the sphincter 800 put in. Also, having the penile pump put in at the same time. I have been trying to find someone who has had these put in to get their response on success. I have not had much luck on finding anyone. You say your implant works for you. Any problems? How long did it take for you to get back on your feet after surgery? Any word would be of great help. Anyone else out there know anyone who has had either of these would be great!!

Thanks, Biff

Hi,

This is my first time in a chat room since my radical prostatectomy (robotics) on 8/15/07 and it's 7 weeks today and I'm still trying to figure out when continence will return. I have constant leakage during the day and every time I get up from sitting I need to race to the bathroom. The nights are getting better even though I'm up 8 - 10 times during the night but days are not improving. I'm doing the kegals and all the things the urologist tells me to do...Does anyone have  a magic formula that may work? The surgery went well and my PSA was 9.9 and the Gleeson was 3+4 = 7. I have friends that have had the same thing and they were 99% continient by 8 - 10 weeks. Maybe I need to be a little more patient.

Hello all.
Today I had an appointment with my surgeon to investigate my continence situation. He did a cystoscope and confirmed the findings of my regular urologist that I had a stricture that was hindering the normal function of my sphincter. He inserted several progressively larger dilation tools, I think these were inflatable. Finally he used a metal tool to break the stiffer part of the stricture. When this was done, he viewed the urethra and bladder neck again, and I could observe it as well on the video monitor, not that it revealed very much to me.

Afterwards we had a consult, and he explained that my stricture was not a bad one, but bad enough that I probably will not regain complete continence without more treatments. Since I am over 5 months post surgery, he recommended not waiting for it to get better on its own, but to aggressively pursue a course of treatment that might improve the situation.

He said I have two choices: Several more progressive dilation treatments similar to what I experienced today, or a procedure called a "bladder neck incision, where he goes in with a scope with a cutting tool on the end of it and makes some small incisions to release the stricture.

There are risks involved with both procedures.

With the Bladder Neck Incision, there is a higher risk of bleeding, which could require a transfusion. Also the procedure will be done under a general anesthetic, although as an outpatient, so the usual risks associated with a general would apply. And of course, the risk of infection. It's obviously a more aggressive and complex procedure than simply stretching the stricture.

The dilation procedure is less invasive, but may take 2, 3, or more treatments to produce results.

The doctor feels that the BNI is the way to go. He says it has a higher probability of being succesful, and of course, would most likely not require a follow up treatment-- IF IT WORKS. And there are no guarantees, but he said in his experience, he estimates that 90% of patients who have this treatment do not require any other treatment and fully recover continence.

Well, is it just a coincidence that I was told that 90% of patients that have a prostatectomy like the one I had experience no complications due to the surgery????

Maybe I am being too skeptical. I have a decision to make. I would appreciate any input that you, my fellow forum members might be able to provide.

Thank you.

One week post-dilation: My continence has not improved, but my stream is better.

Well I have made the decision to have the "bladder neck incision" done. I'll go in on October 30. I'm hoping that the doc's confidence is justified. I'm not excited about having a catheter again, doc said 5-7 days. But if it works, it will be worth it.