incontinence

The Nev
The Nev Member Posts: 50
edited March 2014 in Prostate Cancer #1
I know this subject has been posted many times but mine seems a bit different and I really need to know how abnormal it is. I had RP DaVinci at M.D. Anderson cancer center in Houston on Sept 29th my Dr has done well over 1000 of these. I hear and read men talking about incontinence and saying they use 3 or 4 pads a day. I use pads per hour; in fact I can't use pads. The first day I used 5 pads in four hours soaked through pads underwear and shorts. My wife had to go buy the briefs and I soak these in a few hours. Over night I soak several. I have almost no control at all. I have problems when walking, standing, all the stress stuff, even a deep breath will cause a flow. Have any of you had problems like this? Does it get better? If anyone has any help idea's it would be greatly appreciated.

Comments

  • gkoper
    gkoper Member Posts: 173
    incontenance
    Patience & exercise should prevail. I had the davinci in May and was wet for almost a month. Kegels...start & stop the stream...will help. As you know, you lost a bladder control muscle...so the other has to be stronger. Stay strong & good luck
    George
  • lewvino
    lewvino Member Posts: 1,010
    Every one is SO DIFFERENT.
    Every one is SO DIFFERENT. Hang in there give it a few weeks Hopefully not months and see what happens. Exercise those Kegels, Walk and of course talk to your Doctor.
    It should get better in time.

    Larry
  • txbarton
    txbarton Member Posts: 89 Member
    Incontinence
    My surgeon had to reconstruct the neck of my bladder told me to expect 1-2 months of incontinence.

    As Larry said, everyone is different both in the details of the procedure performed and their reaction to the procedure.

    I've already decided that some incontinence is preferable to the alternative of not having caught the disease.

    VB
  • tpelle
    tpelle Member Posts: 184
    Kegels, Kegels and More Kegels
    It seems to me that you must be consuming large quantities of liquids to fill five pads in four hours. I am using two DEPENDS pads per day, seven years after radical prostatectomy. One at bedtime which carries me through late afternoon; one about 4 P.M. which carries me to bedtime. I'm slowly dripping anytime I'm standing. I tried several other pad brands but they didn't compare with DEPENDS. Contrary to what I've seen posted here, I was advised to limit my liquid intake to about 32 ounces per day, and particularly during the several hours before bedtime. I started out with DEPENDS briefs too, but after several weeks was able switch to jockey shorts and pads. My urologist/surgeon advised doing several Kegels during urination INITIALLY, only to learn how they are done. If you can fully cut off or even reduce the stream, you're exercizing the correct muscle. He advised NOT doing Kegels during urination regularly or when sitting on the toilet -- only when standing. He also said to do 200 - 300, gradually building up from sets of 10 to sets of no more than 30, several times per day. Hang in there, Nev. It will improve.
  • The Nev
    The Nev Member Posts: 50
    Thanks guys I expected some
    Thanks guys I expected some problems but I guess this caught me by surprise. I do the Kegels and did them before surgery but really didn't have a lot of time between my decision to have surgery and the actual surgery date only a couple of weeks. I do drink a lot mostly water and crystal lite, but I wouldn't say too much. I'll hang in there and keep trying and see how it goes. I know my pain/problems are no greater then the rest of you have/had so Good luck to all of you and thanks again for the reply’s it does help
  • lewvino
    lewvino Member Posts: 1,010
    The Nev said:

    Thanks guys I expected some
    Thanks guys I expected some problems but I guess this caught me by surprise. I do the Kegels and did them before surgery but really didn't have a lot of time between my decision to have surgery and the actual surgery date only a couple of weeks. I do drink a lot mostly water and crystal lite, but I wouldn't say too much. I'll hang in there and keep trying and see how it goes. I know my pain/problems are no greater then the rest of you have/had so Good luck to all of you and thanks again for the reply’s it does help

    You probably do but cut back
    You probably do but cut back your water late afternoon/early evening. Also I found out the hard way that I had to stay away from lemonade and apple juice. Also watch out for the caffeine since those will all make you flow.

    Larry
  • tpelle
    tpelle Member Posts: 184
    The Nev said:

    Thanks guys I expected some
    Thanks guys I expected some problems but I guess this caught me by surprise. I do the Kegels and did them before surgery but really didn't have a lot of time between my decision to have surgery and the actual surgery date only a couple of weeks. I do drink a lot mostly water and crystal lite, but I wouldn't say too much. I'll hang in there and keep trying and see how it goes. I know my pain/problems are no greater then the rest of you have/had so Good luck to all of you and thanks again for the reply’s it does help

    Artificial Sweetners
    Nev: My very worst intake is red wine, followed by coffee and artificial sweetners such as in Crystal Lite (aspartame). Remember, liquid in; liquid out unless we sweat heavily. But, as they say, we all have different reactions. Good Luck
  • lion1
    lion1 Member Posts: 241
    tpelle said:

    Artificial Sweetners
    Nev: My very worst intake is red wine, followed by coffee and artificial sweetners such as in Crystal Lite (aspartame). Remember, liquid in; liquid out unless we sweat heavily. But, as they say, we all have different reactions. Good Luck

    Nev.it's early in the game for you
    Nev,

    It's early in the game for you and the above posts have given you some excellent advice. Once you gain a measure of control and get back alot of what you lost continence wise, ensure you follow your URO's advice and he will give you aftercare, that for most will help.

    In my case--incontinent 3 1/2 years steadily seeking a cure but not doing anything drastic.

    3-4 pads a day. But let me give you some quality of life advice that noone above has mentioned. You'll find out what irriates your bladder soon enough and what makes you leak. But, it's early you're still recovering. Some may say lemonade, some may say wine, and yes I know what makes me pee/leak more. And at times that's everything.But you can't avoid liquids.

    So my advice to you is be smart about your incontinence but eventually make sure you live life to the fullest----what I mean by that is have a beer with your buddies, drink that cup of coffee if you feel like it, have a glass of wine with your significant other--Live Life. And be prepared when you go out to have contingency measures.

    You will find that you cannot avoid everything---trust me after 3 1/2 yrs of this incotninence-Water yes-water--at times will be just as bad as alcohol--it purely depends on you. Some of the folks who responded above have are also experiencing what you have, they are completely different from those who have been leaking for years. There's no guarantees on what will be the fix for you and if others say they know---they don't -- you are unique and an individual and I pray that your continent real soon. Incontinence stinks and I am qualified to say it-------------so live life and get better along the way.

    Those who regain continence quickly make everything sound like a walk in the park---a no brainer---but for those of us that are leaking years later---it's not a walk in the park----it's a curse!!! And further treatment is risky but probably inevitable for me. See the further you get along the less people are willing to discuss things with you.

    I had one reply to my request for Sling Recipients--seems like most people just want to report good news------------but that doesn't help us who are still fighting! And yes I am frustrated, but at least I am sharing my story ---the truth and reality of living with incontinence. And if my posts bothers anyone, then they are on this website for the wrong reasons.

    It is so great to VENT!!!!!!!!!!I love CSN!!!!!!!

    Thanks-----------Makes sense doesn't it----------I can't stand up in the middle of my office and do this--------Life is so Great!!!!!!!!!!!!!!!!!!!!

    Lion1
  • The Nev
    The Nev Member Posts: 50
    lion1 said:

    Nev.it's early in the game for you
    Nev,

    It's early in the game for you and the above posts have given you some excellent advice. Once you gain a measure of control and get back alot of what you lost continence wise, ensure you follow your URO's advice and he will give you aftercare, that for most will help.

    In my case--incontinent 3 1/2 years steadily seeking a cure but not doing anything drastic.

    3-4 pads a day. But let me give you some quality of life advice that noone above has mentioned. You'll find out what irriates your bladder soon enough and what makes you leak. But, it's early you're still recovering. Some may say lemonade, some may say wine, and yes I know what makes me pee/leak more. And at times that's everything.But you can't avoid liquids.

    So my advice to you is be smart about your incontinence but eventually make sure you live life to the fullest----what I mean by that is have a beer with your buddies, drink that cup of coffee if you feel like it, have a glass of wine with your significant other--Live Life. And be prepared when you go out to have contingency measures.

    You will find that you cannot avoid everything---trust me after 3 1/2 yrs of this incotninence-Water yes-water--at times will be just as bad as alcohol--it purely depends on you. Some of the folks who responded above have are also experiencing what you have, they are completely different from those who have been leaking for years. There's no guarantees on what will be the fix for you and if others say they know---they don't -- you are unique and an individual and I pray that your continent real soon. Incontinence stinks and I am qualified to say it-------------so live life and get better along the way.

    Those who regain continence quickly make everything sound like a walk in the park---a no brainer---but for those of us that are leaking years later---it's not a walk in the park----it's a curse!!! And further treatment is risky but probably inevitable for me. See the further you get along the less people are willing to discuss things with you.

    I had one reply to my request for Sling Recipients--seems like most people just want to report good news------------but that doesn't help us who are still fighting! And yes I am frustrated, but at least I am sharing my story ---the truth and reality of living with incontinence. And if my posts bothers anyone, then they are on this website for the wrong reasons.

    It is so great to VENT!!!!!!!!!!I love CSN!!!!!!!

    Thanks-----------Makes sense doesn't it----------I can't stand up in the middle of my office and do this--------Life is so Great!!!!!!!!!!!!!!!!!!!!

    Lion1

    Thanks Lion1 a lot of good
    Thanks Lion1 a lot of good advice, I really don't blame you for being frustrated and you’re right it is a curse. I'm glad you posted, and I did also for the same reason it's great to hear the success stories but it's necessary to hear the not so successful stories also. With all I had read and heard I thought I was an exception just really unlucky but it’s obvious that many have problems to deal with. Hope you find some help with your problem glad you got to vent. Again thanks to all for posting!
  • lewvino
    lewvino Member Posts: 1,010
    lion1 said:

    Nev.it's early in the game for you
    Nev,

    It's early in the game for you and the above posts have given you some excellent advice. Once you gain a measure of control and get back alot of what you lost continence wise, ensure you follow your URO's advice and he will give you aftercare, that for most will help.

    In my case--incontinent 3 1/2 years steadily seeking a cure but not doing anything drastic.

    3-4 pads a day. But let me give you some quality of life advice that noone above has mentioned. You'll find out what irriates your bladder soon enough and what makes you leak. But, it's early you're still recovering. Some may say lemonade, some may say wine, and yes I know what makes me pee/leak more. And at times that's everything.But you can't avoid liquids.

    So my advice to you is be smart about your incontinence but eventually make sure you live life to the fullest----what I mean by that is have a beer with your buddies, drink that cup of coffee if you feel like it, have a glass of wine with your significant other--Live Life. And be prepared when you go out to have contingency measures.

    You will find that you cannot avoid everything---trust me after 3 1/2 yrs of this incotninence-Water yes-water--at times will be just as bad as alcohol--it purely depends on you. Some of the folks who responded above have are also experiencing what you have, they are completely different from those who have been leaking for years. There's no guarantees on what will be the fix for you and if others say they know---they don't -- you are unique and an individual and I pray that your continent real soon. Incontinence stinks and I am qualified to say it-------------so live life and get better along the way.

    Those who regain continence quickly make everything sound like a walk in the park---a no brainer---but for those of us that are leaking years later---it's not a walk in the park----it's a curse!!! And further treatment is risky but probably inevitable for me. See the further you get along the less people are willing to discuss things with you.

    I had one reply to my request for Sling Recipients--seems like most people just want to report good news------------but that doesn't help us who are still fighting! And yes I am frustrated, but at least I am sharing my story ---the truth and reality of living with incontinence. And if my posts bothers anyone, then they are on this website for the wrong reasons.

    It is so great to VENT!!!!!!!!!!I love CSN!!!!!!!

    Thanks-----------Makes sense doesn't it----------I can't stand up in the middle of my office and do this--------Life is so Great!!!!!!!!!!!!!!!!!!!!

    Lion1

    At the local prostate cancer
    At the local prostate cancer support group I attend there was a man there last night. He talked about having a cuff put in after 4 years of continuous leakage. He is 84 years young.
    He was very happy with the cuff. He has had the cuff for 10 years now and only had to have one 'tuneup' on the equipment. Basically some type of clamp is inserted around the urethra which is in an off position. Some type of device is placed in one testicle. He gets normal urge that the bladder is full and then pushes on the testicle which opens the valve for 90 seconds. I believe he said it shuts back by itself after 90 seconds.

    I do not know if the device always has to be put in the testicle but he was OK with that since he had testicular cancer before he had prostate cancer.

    Larry