Joined the club April 7

mikey51
mikey51 Member Posts: 17
edited March 2014 in Prostate Cancer #1
Hi all. These sites are wonderful to those of us dealing with this issue. I had Da Vinci robot radical prostatectomy on April 7. Catheter came out 4 days ago on 14th. I had virtually no pain after surgery - just some discomfort - I have a moderate tolerance for pain. Anyway, walked with cath, still walking lots each day. But going through the pads like crazy. I know that every man is different and regains continence on vastly different schedules, God willing, on different time tables, but this is the most disheartening time for me. If I sit with legs up, I can hold it pretty good. But if I am standing, I am peeing. Can't seem to do anything about that. I am doing the Kegels as prescribed.

I developed a killer yeast infection on Thursday because I have never stayed this wet for this long a time before. I got a prescription and it is better now. But how do you deal with wetness going forward? I have only 3 more weeks and have to get back to work and I can't imagine being in a fast paced business environment up and down all day without a better strategy for handling the wetness short term.

Any suggestions? I am going through about 4 pads a day now. And, I realize that this is early on in this phase for me.

Sorry to have had to join the club but honored to be in such good company!

Comments

  • bdhilton
    bdhilton Member Posts: 846 Member
    Look at William Catalona's
    Look at William Catalona's web site about his recommendations how to do kegels plus other answers about bladder control after surgery… He is one of the best surgeons and subject matter experts on this in the world. ... http://www.drcatalona.com/qa/faq_continence.asp

    I was lucky and blessed I had open process preformed by Catalona and was dry as soon as the cath came out ...best of luck

    1. Q: Is frequent urination normal after a radical prostatectomy?
    A: Yes, but it’s usually only a matter of time before urination returns to normal.

    Bladder capacity is usually reduced somewhat by the surgery, but the main cause is that, after surgery; the bladder wall is swollen and thickened and irritable. Normally, the bladder wall is thin and elastic and maintains a low pressure until it has stored 8 to 10 ounces of urine.

    After surgery, the swollen bladder does not store much urine at a low pressure. As soon as it starts to fill, the pressure goes up and you feel the need to urinate. In the great majority of cases, this situation gradually improves with time, but it can take more than a year in some cases.

    Some patients are left with a smaller capacity bladder because scar tissue limits the elasticity of the bladder. Medications that sometimes help are Ditropan and Detral, but since these medicines work by “quieting” the bladder’s irritability, they do not solve the underlying problem: It takes time for swelling to subside and for scar tissue to stretch.

    Avoiding diuretics such as alcohol and caffeine diminishes the symptoms. The situation is worse at night, because after surgery, some fluid that is retained in the lower half of the body during the day gets redistributed at night and is excreted by the kidneys at night. This phenomenon of making more urine at night is called “nocturnal polyuria.”

    2. Q: I understand that scar tissue can form after a radical prostatectomy and cause urinary flow problems. What are the symptoms of such scar tissue formation and what are the possible treatments?
    A: Scar tissue can form between the bladder and urethra. The symptoms usually include a slow urinary stream, increased urinary frequency, painful urination, or urinary retention.

    Treatment includes dilation (stretching the tissue under anesthesia with an instrument that is passed up the urethra). In severe cases, it may require cutting the scar tissue away (under anesthesia) and injection of a cortisone-like drug.

    3. Q: How do injections work to make the sphincter muscle stronger after a RRP? And are there medications which do the same thing?
    A: The sphincter muscle produces continence after a radical prostatectomy. When the walls of the urethra are drawn together by the sphincter muscle, a watertight seal is created.

    Kegel exercises work by strengthening the muscle and increasing its bulk. Sometimes, injections of a liquid protein called collagen can provide the necessary bulk to approximate the walls of the urethra (about 25 % chance). For men whose incontinence is due to an overactive bladder, bladder-relaxing medications can help in most instances.

    4. Q: Please describe the proper way to do kegel exercises after a RRP?
    A: Kegel exercises work by increasing the bulk and strength of the one remaining sphincter muscle. There are disagreements about what is the “proper” way.

    I like to have patients do Kegel exercises by imagining that they are urinating and then contracting the muscles to “cut off” the stream. They should hold for only a second or two. Then they should let the muscle rest for 5-10 seconds and repeat the contraction.

    I advise patients to do a set of 10 contractions four times a day – usually at breakfast, lunch, dinner, and bedtime. This schedule allows the muscles to rest between exercise periods so the muscles do not remain in a fatigued state.

    In addition, I like patients to actually stop the urinary stream once or twice when urinating to determine whether they are contracting the right muscles. If the stream stops, they are contracting the right muscles. Taken together, this schedule leads to about 50 contractions per day.

    The exercise will strengthen the muscles if done faithfully. More than 50 contractions may be too much and may leave the muscles fatigued – resulting in worse continence.

    5. Q: Is there any benefit beginning Kegel exercises prior to radical prostatectomy?
    A: The short answer is “yes.” I believe that it will pay dividends to strengthen the muscles before surgery.

    6. Q: How much bladder control can I expect to have after a RRP and is it going to change with time?
    A: With an experienced surgeon, about 92% of patients regain normal control.

    Although some patients continue to have improvement in continence for up to 18 months after surgery, if a man has not gained any control whatever after 6 months, it is unlikely that he will spontaneously achieve complete control.

    The actual recovery time varies from immediately after the catheter is removed to about 18 months, at which point it is about as good as it is going to be. Sometimes it can take months for the sphincter muscle to become strong enough to control urination.

    Kegel/sphincter exercises are important for restoring continence. Of the remaining 8% of men who have not regained normal control, most have mild stress incontinence that requires minimal protection (a pad). Only 1-2% have severe incontinence that a procedure to tighten the sphincter or artificial sphincter implantation.

    7. Q: What is the recommended time period for removal of the catheter after a RRP?
    A: Different surgeons have different recommended times. In my practice, if the bladder and urethra come together nicely, without any tension, the catheter can be removed after one full week. If some tension is pulling the bladder down to the urethral stump, the catheter remains in place for 10 days.

    If it is difficult to approximate the bladder neck to the urethra, the catheter must remain for two weeks or more. The main concern about early removal is that there could be edema (swelling) at the junction of the bladder and urethra that obstructs the flow of urine, and it might be necessary to replace the catheter. Another possible concern would be that if the anastomosis (junction between the bladder and urethra) is not healed, there could be leakage of urine at the time of urination.

    8. Q: What is your opinion on the polypropylene sling of the bulbar urethra for post-radical prostatectomy incontinence and erectile dysfunction? And which specialist performs this procedure?
    A: It works in some cases to correct urinary incontinence, but the result is not always durable. It does not correct sexual dysfunction.

    A urologist who specializes in post-prostatectomy incontinence usually performs this procedure. As a policy, I do not recommend individual doctors, but there is substantial experience with this procedure at Northwestern University and the University of Michigan.

    9. Q: Please provide me with literature available regarding the implantation of an artificial urinary sphincter
    A: I would recommend that you search on the internet for American Medical Systems, the company that manufactures the artificial sphincters (http://www.visitams.com/).

    The artificial sphincter consists of: a cuff that wraps around the urethra, a pressurized reservoir that holds the hydrolic fluid and a pump that allows the cuff to inflate and deflate so the urine can start and stop.

    I think it is a great solution for men with severe urinary incontinence, but I would advise this procedure be performed by a doctor who specializes in incontinence surgery.

    10. Q: Could you please explain how injections work to make the sphincter muscle stronger after a RRP? And are there medications which do the same thing?
    A:The sphincter muscle produces continence after radical prostatectomy. When the walls of the urethral are drawn together by the sphincter muscle, a water-tight seal is created. Kegel exercises (see the Post-Op Advice page - Pelvic Floor Muscle Exercises for more information) work by strengthening the muscle and increasing its bulk.

    Sometimes, injections of a liquid protein called collagen can provide the necessary bulk to approximate the walls of the urethra (about 25% chance).

    For men whose incontinence is due to an overactive bladder, bladder relaxing medications can help in most instances.

    11. Q: After my RRP, I have had problems with urine blockage. I have had my catheter replaced four times. Each time I could urinate on my own for a couple of days, and then the blockage started again. What are the possible causes of this problem?
    A:One of the complications that can occur after radical prostatectomy is the formation of scar tissue between the bladder and the urethra. (When the prostate is removed, the bladder and the urethra must be connected, sewn together, to fill the empty space.)

    Mild scarring can be treated by simply replacing the catheter for a few more days to allow the healing to become more complete.

    Slightly more severe cases can be treated by the doctor dilating the stricture or scars with a dilating instrument.

    More severe cases require the patient to perform intermittent self catheterization to keep the stricture open. Even more severe cases require the scar tissue to be incised by a procedure that is performed through a scope with the patient under anesthesia. Usually, a catheter is left in place for several days after this procedure.

    The most severe cases require the scar tissue to be trimmed out with a resectoscope (a scope designed to remove tissue). When this procedure is performed, it is often helpful to inject a cortisone-like medication into the scar tissue to prevent another stricture from re-forming.

    The bottom line is that this problem can be fixed, but it sometimes takes patience on the part of the patient and the doctor alike.

    12. Q: My Husband had a radical prostectomey 6 months ago. He has not gained any control of his bladder. Are there specialists who could help?
    A:Although some patients continue to have improvement in continence for up to 18 months after surgery, if he has no control whatever 6 months after surgery, it is unlikely that he will spontaneously achieve complete control. I would recommend that he have another operation for the implantation of an artificial urinary sphincter. It will dramatically improve his life. Your husband should go to an expert who specializes in this type of reconstructive surgery.
  • mikey51
    mikey51 Member Posts: 17
    bdhilton said:

    Look at William Catalona's
    Look at William Catalona's web site about his recommendations how to do kegels plus other answers about bladder control after surgery… He is one of the best surgeons and subject matter experts on this in the world. ... http://www.drcatalona.com/qa/faq_continence.asp

    I was lucky and blessed I had open process preformed by Catalona and was dry as soon as the cath came out ...best of luck

    1. Q: Is frequent urination normal after a radical prostatectomy?
    A: Yes, but it’s usually only a matter of time before urination returns to normal.

    Bladder capacity is usually reduced somewhat by the surgery, but the main cause is that, after surgery; the bladder wall is swollen and thickened and irritable. Normally, the bladder wall is thin and elastic and maintains a low pressure until it has stored 8 to 10 ounces of urine.

    After surgery, the swollen bladder does not store much urine at a low pressure. As soon as it starts to fill, the pressure goes up and you feel the need to urinate. In the great majority of cases, this situation gradually improves with time, but it can take more than a year in some cases.

    Some patients are left with a smaller capacity bladder because scar tissue limits the elasticity of the bladder. Medications that sometimes help are Ditropan and Detral, but since these medicines work by “quieting” the bladder’s irritability, they do not solve the underlying problem: It takes time for swelling to subside and for scar tissue to stretch.

    Avoiding diuretics such as alcohol and caffeine diminishes the symptoms. The situation is worse at night, because after surgery, some fluid that is retained in the lower half of the body during the day gets redistributed at night and is excreted by the kidneys at night. This phenomenon of making more urine at night is called “nocturnal polyuria.”

    2. Q: I understand that scar tissue can form after a radical prostatectomy and cause urinary flow problems. What are the symptoms of such scar tissue formation and what are the possible treatments?
    A: Scar tissue can form between the bladder and urethra. The symptoms usually include a slow urinary stream, increased urinary frequency, painful urination, or urinary retention.

    Treatment includes dilation (stretching the tissue under anesthesia with an instrument that is passed up the urethra). In severe cases, it may require cutting the scar tissue away (under anesthesia) and injection of a cortisone-like drug.

    3. Q: How do injections work to make the sphincter muscle stronger after a RRP? And are there medications which do the same thing?
    A: The sphincter muscle produces continence after a radical prostatectomy. When the walls of the urethra are drawn together by the sphincter muscle, a watertight seal is created.

    Kegel exercises work by strengthening the muscle and increasing its bulk. Sometimes, injections of a liquid protein called collagen can provide the necessary bulk to approximate the walls of the urethra (about 25 % chance). For men whose incontinence is due to an overactive bladder, bladder-relaxing medications can help in most instances.

    4. Q: Please describe the proper way to do kegel exercises after a RRP?
    A: Kegel exercises work by increasing the bulk and strength of the one remaining sphincter muscle. There are disagreements about what is the “proper” way.

    I like to have patients do Kegel exercises by imagining that they are urinating and then contracting the muscles to “cut off” the stream. They should hold for only a second or two. Then they should let the muscle rest for 5-10 seconds and repeat the contraction.

    I advise patients to do a set of 10 contractions four times a day – usually at breakfast, lunch, dinner, and bedtime. This schedule allows the muscles to rest between exercise periods so the muscles do not remain in a fatigued state.

    In addition, I like patients to actually stop the urinary stream once or twice when urinating to determine whether they are contracting the right muscles. If the stream stops, they are contracting the right muscles. Taken together, this schedule leads to about 50 contractions per day.

    The exercise will strengthen the muscles if done faithfully. More than 50 contractions may be too much and may leave the muscles fatigued – resulting in worse continence.

    5. Q: Is there any benefit beginning Kegel exercises prior to radical prostatectomy?
    A: The short answer is “yes.” I believe that it will pay dividends to strengthen the muscles before surgery.

    6. Q: How much bladder control can I expect to have after a RRP and is it going to change with time?
    A: With an experienced surgeon, about 92% of patients regain normal control.

    Although some patients continue to have improvement in continence for up to 18 months after surgery, if a man has not gained any control whatever after 6 months, it is unlikely that he will spontaneously achieve complete control.

    The actual recovery time varies from immediately after the catheter is removed to about 18 months, at which point it is about as good as it is going to be. Sometimes it can take months for the sphincter muscle to become strong enough to control urination.

    Kegel/sphincter exercises are important for restoring continence. Of the remaining 8% of men who have not regained normal control, most have mild stress incontinence that requires minimal protection (a pad). Only 1-2% have severe incontinence that a procedure to tighten the sphincter or artificial sphincter implantation.

    7. Q: What is the recommended time period for removal of the catheter after a RRP?
    A: Different surgeons have different recommended times. In my practice, if the bladder and urethra come together nicely, without any tension, the catheter can be removed after one full week. If some tension is pulling the bladder down to the urethral stump, the catheter remains in place for 10 days.

    If it is difficult to approximate the bladder neck to the urethra, the catheter must remain for two weeks or more. The main concern about early removal is that there could be edema (swelling) at the junction of the bladder and urethra that obstructs the flow of urine, and it might be necessary to replace the catheter. Another possible concern would be that if the anastomosis (junction between the bladder and urethra) is not healed, there could be leakage of urine at the time of urination.

    8. Q: What is your opinion on the polypropylene sling of the bulbar urethra for post-radical prostatectomy incontinence and erectile dysfunction? And which specialist performs this procedure?
    A: It works in some cases to correct urinary incontinence, but the result is not always durable. It does not correct sexual dysfunction.

    A urologist who specializes in post-prostatectomy incontinence usually performs this procedure. As a policy, I do not recommend individual doctors, but there is substantial experience with this procedure at Northwestern University and the University of Michigan.

    9. Q: Please provide me with literature available regarding the implantation of an artificial urinary sphincter
    A: I would recommend that you search on the internet for American Medical Systems, the company that manufactures the artificial sphincters (http://www.visitams.com/).

    The artificial sphincter consists of: a cuff that wraps around the urethra, a pressurized reservoir that holds the hydrolic fluid and a pump that allows the cuff to inflate and deflate so the urine can start and stop.

    I think it is a great solution for men with severe urinary incontinence, but I would advise this procedure be performed by a doctor who specializes in incontinence surgery.

    10. Q: Could you please explain how injections work to make the sphincter muscle stronger after a RRP? And are there medications which do the same thing?
    A:The sphincter muscle produces continence after radical prostatectomy. When the walls of the urethral are drawn together by the sphincter muscle, a water-tight seal is created. Kegel exercises (see the Post-Op Advice page - Pelvic Floor Muscle Exercises for more information) work by strengthening the muscle and increasing its bulk.

    Sometimes, injections of a liquid protein called collagen can provide the necessary bulk to approximate the walls of the urethra (about 25% chance).

    For men whose incontinence is due to an overactive bladder, bladder relaxing medications can help in most instances.

    11. Q: After my RRP, I have had problems with urine blockage. I have had my catheter replaced four times. Each time I could urinate on my own for a couple of days, and then the blockage started again. What are the possible causes of this problem?
    A:One of the complications that can occur after radical prostatectomy is the formation of scar tissue between the bladder and the urethra. (When the prostate is removed, the bladder and the urethra must be connected, sewn together, to fill the empty space.)

    Mild scarring can be treated by simply replacing the catheter for a few more days to allow the healing to become more complete.

    Slightly more severe cases can be treated by the doctor dilating the stricture or scars with a dilating instrument.

    More severe cases require the patient to perform intermittent self catheterization to keep the stricture open. Even more severe cases require the scar tissue to be incised by a procedure that is performed through a scope with the patient under anesthesia. Usually, a catheter is left in place for several days after this procedure.

    The most severe cases require the scar tissue to be trimmed out with a resectoscope (a scope designed to remove tissue). When this procedure is performed, it is often helpful to inject a cortisone-like medication into the scar tissue to prevent another stricture from re-forming.

    The bottom line is that this problem can be fixed, but it sometimes takes patience on the part of the patient and the doctor alike.

    12. Q: My Husband had a radical prostectomey 6 months ago. He has not gained any control of his bladder. Are there specialists who could help?
    A:Although some patients continue to have improvement in continence for up to 18 months after surgery, if he has no control whatever 6 months after surgery, it is unlikely that he will spontaneously achieve complete control. I would recommend that he have another operation for the implantation of an artificial urinary sphincter. It will dramatically improve his life. Your husband should go to an expert who specializes in this type of reconstructive surgery.

    Many thanks....
    This is excellent. Thanks for sharing. I have a long way to go but have a good attitude about it.

    Mikey
  • Trew
    Trew Member Posts: 932 Member
    Pads and Wet and Crying and...
    mikey, I know the feelings you are going through, only I am on hormone shots that really magnify the problem. After 4 weeks I was back to work, too. Meetings, lots of car travel, in and of the car- frequent trips home for changes- sometimes wetting all the way through the pad and getting my pants wet. Just plan on having a back up change with you, and lots of extra pads. Nothing like being wet through for making yo feel like the world is crashing down on you, but somehow, I got through it. I have one more year of shots- and I am still leaking one year later.

    4 pads a day? Not bad. Some days I used 8- 10 those first 2 months.

    I wish you the very best.
  • gumbyrun
    gumbyrun Member Posts: 58 Member
    Trew said:

    Pads and Wet and Crying and...
    mikey, I know the feelings you are going through, only I am on hormone shots that really magnify the problem. After 4 weeks I was back to work, too. Meetings, lots of car travel, in and of the car- frequent trips home for changes- sometimes wetting all the way through the pad and getting my pants wet. Just plan on having a back up change with you, and lots of extra pads. Nothing like being wet through for making yo feel like the world is crashing down on you, but somehow, I got through it. I have one more year of shots- and I am still leaking one year later.

    4 pads a day? Not bad. Some days I used 8- 10 those first 2 months.

    I wish you the very best.

    Pads, kegels
    BD - thanks for the post from Catalalona's site. The PA I saw a when I had the cath removed told me to do 200 a day! No way have I done that but I will say when I first started doing them I couldn't hold the Kegel for more than 1 second or so and now usually count to 10. I will change that based on your post.

    Mikey - I have slowed down on my leakage but was a steady trickle for a week or so (if not longer) after the cath was removed. My wife gave me some skin protectant and I applied it everytime I changed the pad. It is from ConvaTec and is called Skin Conditioner 2 - Aloe Vesta. I think it was part of a 3 stage skin treatment or something. Also, I ran a wash cloth under warm water and washed myself with every pad. The hotter I could stand it the better it felt...then soaped it up and rinsed it again with the wash cloth. It was a highpoint of my day! A little pampering is in order you know!
  • shane59
    shane59 Member Posts: 86
    hope this helps mikey
    Hi mikey we all have leaks after the catheter is out . took me a week or 3 to slow down the water works. I had a month of work and returning was a challendge . I found firm fitting underware that gave me good support really helped I also wore shorts with a lining insert like quick dry swimming pants helped still with a padd.I know its not easy I started trying to hold on a little longer between visits to the toilet, 4 months on and yes it is getting a lot better 1 padd a day and dry ,but still get the ocasional squirt when sneezing coughing or farting but life is getting better .hope this helps a bit ,best wishes mate
    shane59
  • bdhilton
    bdhilton Member Posts: 846 Member
    gumbyrun said:

    Pads, kegels
    BD - thanks for the post from Catalalona's site. The PA I saw a when I had the cath removed told me to do 200 a day! No way have I done that but I will say when I first started doing them I couldn't hold the Kegel for more than 1 second or so and now usually count to 10. I will change that based on your post.

    Mikey - I have slowed down on my leakage but was a steady trickle for a week or so (if not longer) after the cath was removed. My wife gave me some skin protectant and I applied it everytime I changed the pad. It is from ConvaTec and is called Skin Conditioner 2 - Aloe Vesta. I think it was part of a 3 stage skin treatment or something. Also, I ran a wash cloth under warm water and washed myself with every pad. The hotter I could stand it the better it felt...then soaped it up and rinsed it again with the wash cloth. It was a highpoint of my day! A little pampering is in order you know!

    I would give Catalona's way
    I would give Catalona's way a try for awhile...I did it prior to surgery (per his requirments) and I have done so after per his requirements and I have been dry from day one...cannot not hurt