Post op Incontinence

mkd51
mkd51 Member Posts: 9
edited March 2014 in Prostate Cancer #1
I'm 51 and I was diagnosed on 1/23/09. I had the robotic procedure on 3/03/09. I had the staples and catheter removed on 3/10/09. Only issue since has been with incontinence. Can anybody offer insight?
Thanks!

Comments

  • lion1
    lion1 Member Posts: 241
    #2
    Post op Incontinence
    MKD51,

    Way too early to be concerned about incontinence. It's expected for most for just a short while. Kegel, follow doctor's orders on lifting and exertion, and be patient.

    I have been incontinent for 3yrs since my surgery. Chnaces are that within the first 6 to 12 months after your surgery, your incontinence will be an after thought. The best thing I could tell you is if you are still incontinent after the next two months, go see your urologist and begin the regiment of urodynamics,biomedtric treatments to teach you how to kegel correctly, and watch your intake of caffiene and alcohol. This is just for starters, but like I said there is a good chance that you won't fall into the 3 yr club, like me.

    I am just being straight forward, so don't even begin to think about a sling or AUS,way to early for that, My surgeon, a very good one, told me not to take any drastic steps until two yrs had passed. It's been three yrs and after collagen injections and all the pre-stuff, I am headed in May to Duke University to visit with Dr Webster, one of the premier doctor's in this field. Even at that point, I will smartly consider, if doing any of these extreme surgeries are worth it. Incontinence is tough and inconvenient and I'm using about 4-5 pads a day, but I don't let anything slow me down. I don't have cancer---I don't have pain---and I have a great wife and family. I'm in no hurry about any other surgery----I am only 49 and very active-------------I would like to hear from others whether they are running, playing softball, etc with the sling or AUS---------------THIS MAY HELP ME MAKE A DECISION SOONER, RAHTER THAN LATER ABOUT ADDITIONAL TREATMENT.

    Didn't mean to get to detailed since you just had surgery,but it's good to hear what others are going through and realize that there's plenty you can do and good to know that your probably won't experience any of this. But, if you do, just stay optimistic and keep a great attitude. So don't let too much time go by and take action with the kegeling and all steps that will get you on you way to being 100% dry.

    Finally,remember this forget about statistics---every one is an individual and everyone's experience is different.

    Good Luck-----------Lion1
  • marteau
    marteau Member Posts: 27
    #3
    incontinence
    like the other post has said, patience is the key here, from what i understand. i had my robotic procedure on Feb 9,---use about 3 pads a day.

    at night, i am dry, but have to get up 2 to 3 times to pee.

    my age is 69---and, i suspect the younger you are, the faster you will get back to normal.
  • ismetals
    ismetals Member Posts: 69
    #4
    I'm 60 and lucky. my
    I'm 60 and lucky. my opperation and post op was a mirror of yours. I have been dry every night since then ( 5+months ) The first few weeks i needed a pad and after a the first week I remained relatively dry. Excersize and vigilance is the key. Alcohol is the enemy. Now things are quite normal with the next battle being ed. Things are improving on that front, although the VA doesn't seem to be any help.
  • Bing
    Bing Member Posts: 10
    #5
    Post - op incontinence.
    As everyone is saying, patience is the key. I had my robotics on January 21st, and the cath out 14 days later. First week was like a faucet you could not turn off, maybe slow down, but not turn off. I just kept doing my kegels, and kept getting better and better. My job is physical, so I am still using a day pad, just in case. I found that caffine was causing me most of my leakage problems, so I am restricting it to one or two caffine drinks a day. After returning to work, I am still finding different movements that cause the occasional drip, but not bad. I am learning to flex the required muscles before I do some jobs that require alot of exertion. Just be patient, and do the exercises. I also found that if I did too many kegels, it seemed to make the leakage begin again. Stressed the muscles, I guess. What worked for me was about 5 or 6 sets a day. Another exercise I came across is to use a 5 or 6 inch rubber ball, placed between my knees, exerting pressure on the ball by rolling my knees in, holding light pressure for 5 seconds, and release. I did these along with the kegels, again 5 or 6 sets a day. It seemed to help for me.Mine got better with time, and now I am just about to what I can call dry. I hope this helps. I can relate to where you are at, as at two weeks after I removed the cath, I felt like I would never get dry again. Keep a positive attitude, as we are still above ground, and have another day to tackle what life throws at us! Good luck, Larry.
  • whubbs
    whubbs Member Posts: 77
    #6
    Incontinence
    I'm 4 months outside of my prostatectomy and doing well.
    One thing I should suggest, based on an experience I had this week, is to never 'hold it' too long after surgery.
    I held it during a meeting this week, until it hurt, you know that pain when driving on the highway waiting for the next rest stop, reclining your seat with each pang of pain, rest stop seemingly miles and hours away...
    After the meeting, I rushed to the restroom, but apparently my bladder, or rather the sphincter below it, had spasmed so bad that I couldn't go. Talk about pain.
    After about 2 hours of back and forth to the restroom, it finally relieved, but since then I've been dealing with some returned incontinence.
    Consequently, I have a new Urologist appt next week. (Surgeon who did the robotic is in NYC concentrates only on the surgery, and the Urologist I had when I determined I had PC had dropped me for all care when I chose a surgeon in NYC for the procedure)
    So, take care of the bladder and drink lots of water.
  • Olee
    Olee Member Posts: 97
    #7
    whubbs said:

    Incontinence
    I'm 4 months outside of my prostatectomy and doing well.
    One thing I should suggest, based on an experience I had this week, is to never 'hold it' too long after surgery.
    I held it during a meeting this week, until it hurt, you know that pain when driving on the highway waiting for the next rest stop, reclining your seat with each pang of pain, rest stop seemingly miles and hours away...
    After the meeting, I rushed to the restroom, but apparently my bladder, or rather the sphincter below it, had spasmed so bad that I couldn't go. Talk about pain.
    After about 2 hours of back and forth to the restroom, it finally relieved, but since then I've been dealing with some returned incontinence.
    Consequently, I have a new Urologist appt next week. (Surgeon who did the robotic is in NYC concentrates only on the surgery, and the Urologist I had when I determined I had PC had dropped me for all care when I chose a surgeon in NYC for the procedure)
    So, take care of the bladder and drink lots of water.

    Incontinence
    I had my surgery on February 19th and had my catheter out on February 27th. The first week was horrible and I felt no control. I am still using about three pads per day and for the most part have the most leakage during stress,sneezing,getting up,coughing etc. The past two days I have had more than usual, which I can't attribute to anything in particular. I went out last night to a hockey game with my family which proved to be a test of patience. I had to refrain from having a beer, which I knew would make things worse, and was very aware of my situation. The walking and standing always creates the most leakage, which was not a problem when exercising near home, but another issue when out in public. My doctor did explain to me that leakage was perfectly natural and the muscles might need to heal before I could even see the slightest improvement. I have had some frustrating times to say the least. I go back to work on April 2nd and although I don't have a very physical job, I still find myself in meetings for long periods of time or even standing and walking around construction sites for an hour or so at a time. I am learning to live with this issue and hope I will see it dissipate over time. The worst thing to do I have found, is to seek out that magic date, six days, six weeks, six months, six years, never. I share the frustration with my fellow survivors, this takes patience.
  • marteau
    marteau Member Posts: 27
    #8
    incontinence proportional to fluid intake unfortunately
    All the docs say to dring up to 2 liters of water a day. Fine, but the down side is a lot of leakage for most of us recent patients, primarily when we are not sitting or walking.

    others of you agree?
  • lion1
    lion1 Member Posts: 241
    #9
    marteau said:

    incontinence proportional to fluid intake unfortunately
    All the docs say to dring up to 2 liters of water a day. Fine, but the down side is a lot of leakage for most of us recent patients, primarily when we are not sitting or walking.

    others of you agree?

    FLUID INTAKE
    Marteau,

    After being incontinent for 3yrs, it doesn't seem to matter whether I drink water, beer or coffee-------------------------I seem to leak the same. Now, I do believe if you drink in excess, the liquid has to go somewhere faster, but regardless of what I drink I leak.

    What I find amazing is I could go to work not drink all morning and still urinate my brains out on some days. My urologist has tried Detrol La and Vesicare because he believed my bladder was low-capacity and contracting, but it did not help a lick.

    Finally, I could tell you this if I didn't have a sitting job, I would be in big trouble and probably would already have an AUS in me by now, but I'm not rushing anything.


    Lion1
  • kreinholt
    kreinholt Member Posts: 35
    #10
    Post Op Incontinence
    I had my procedure on 5 March and had that horrible catheter removed on 13 March. I have been dealing with the urinary incontinence ever since. I have started my kegals and am determined to get this thing under control. I try not to get discouraged. As long as I am laying down or sitting down, I am fine. As soon as I get up and gravity takes over, I am heading for the bathroom. I seem to be able to hold it somewhat until I release it at the toilet, so I guess that is a positive, but it has definitely limited the activities that I feel up to doing. I will go out occasionally, if I need to, but for the most part I feel limited. I am trying to break out of that shell though. I go back to work the first or second week of April so that will be a challenge. Let's face it, it is not a good or natural feeling. At least I personally don't think so. I read about other's experiences and some give me a glimmer of hope. I am trying to condition my mind to not expect a lot for maybe six months, but keep on doing the kegal exercises and hope for better. I am 48 yo so I hope that my age and the fact that I am physically active (take karate and snowboard) is on my side. Please keep me posted on how you progress through this. As you can see, you're not alone. So far, my experiences have seemed somewhat typical of what others are going through, so I value other's stories.
  • kreinholt
    kreinholt Member Posts: 35
    #11
    Olee said:

    Incontinence
    I had my surgery on February 19th and had my catheter out on February 27th. The first week was horrible and I felt no control. I am still using about three pads per day and for the most part have the most leakage during stress,sneezing,getting up,coughing etc. The past two days I have had more than usual, which I can't attribute to anything in particular. I went out last night to a hockey game with my family which proved to be a test of patience. I had to refrain from having a beer, which I knew would make things worse, and was very aware of my situation. The walking and standing always creates the most leakage, which was not a problem when exercising near home, but another issue when out in public. My doctor did explain to me that leakage was perfectly natural and the muscles might need to heal before I could even see the slightest improvement. I have had some frustrating times to say the least. I go back to work on April 2nd and although I don't have a very physical job, I still find myself in meetings for long periods of time or even standing and walking around construction sites for an hour or so at a time. I am learning to live with this issue and hope I will see it dissipate over time. The worst thing to do I have found, is to seek out that magic date, six days, six weeks, six months, six years, never. I share the frustration with my fellow survivors, this takes patience.

    I feel your pain Olee
    Olee, how did work go today? I too went back to work today. Wasn't sure what to expect. I am a Program Manager so my job is not as much physical, however, I do find the necessity to leave my desk and visit the assembly line on occasion to see how things are going, if not just to visit the folks down on the line to say hi. Today went fairly well. Like you, I have the most issues while I am standing or walking. I am fine as long as I am sitting or lying down, however, when you get up. gravity takes over. I have been able to somewhat hold it until I can reach the bathroom so I have made it a ritual to go straight to the restroom when I get up to relieve the buildup. That gives me a little more comfort to walk a little bit until it builds up again. When I stand for a prolonged period of time, however, and start to walk, I am not able to hold it until I reach the restroom, so that leakage seems to be unavoidable at this point. The good thing is that the men's dependables can hold a lot of fluid, but needless to say, I try to limit my walking around the plant for now until I can regain control.

    I have sensed some improvement in control by doing the kegals, but like you I am not trying to get wrapped up with a certain date that I will regain control. I am taking it day by day. I am trying very hard to not let it limit me too much so I have started to "test" my leakage control. I live in Salt Lake City and love to snowboard when I get the chance. It's easy to do when you're a local surrounded by the greatest ski resorts on earth. My doctors would have probably advised me against it by I went snowboarding yesterday, armed with multiple pads. Made 3 good runs and was tired so I called it a day, however, the leakage was not too bad. Certain moves would cause occasional leakage but for the most part it didn't bother me, at least not enough to discourage me from going again. I did visit the restroom after each run, as is my ritual. Overall the day was enjoyable and it was good to get back on the board since my surgery. Now if I can just get back to karate.

    I do feel more confident going to work tomorrow since I now know what to expect after today. I am traveling to Buffalo, NY on business at the end of April, so that will be a new challenge. I hope I can get an isle seat.
  • Olee
    Olee Member Posts: 97
    #12
    lion1 said:

    FLUID INTAKE
    Marteau,

    After being incontinent for 3yrs, it doesn't seem to matter whether I drink water, beer or coffee-------------------------I seem to leak the same. Now, I do believe if you drink in excess, the liquid has to go somewhere faster, but regardless of what I drink I leak.

    What I find amazing is I could go to work not drink all morning and still urinate my brains out on some days. My urologist has tried Detrol La and Vesicare because he believed my bladder was low-capacity and contracting, but it did not help a lick.

    Finally, I could tell you this if I didn't have a sitting job, I would be in big trouble and probably would already have an AUS in me by now, but I'm not rushing anything.


    Lion1

    Kreinholt, it sounds like
    Kreinholt, it sounds like you are doing exactly what i am doing, trying to figure out a system that allows us to handle this problem while at work. I went back April 2nd and I am an outside salesman in the construction industry. I'm fine while riding in the car but I quickly learned to pull into a fast food joint or gas station moments before an appointment. Going straight in to meet a customer, which sometimes involves walking around a site for an hour, without first stopping at a bathroom could prove disastrous. I had a meeting on Friday at a customer's office where we stood for the last 30 minutes talking. Good thing I had pulled into the McDonalds minutes before the appointment. I've got to at least work this problem in so I can concentrate on my job and not rushing a client so I can get to the bathroom. I went ahead packed a pack of pads in the trunk and keep more than enough in my brief case. Definitely use a few more pads during the day now that I am getting in and out of the car and standing more. Coincidentally I had my post-op visit on Friday and my doctor says this is all normal. He assured me that in the whole scope of things we're still in the early stages of healing. He sat with me for 30 minutes and discussed urinary control and ed. I felt better after the conversation. He encouraged me to do the kegel exercises and be patient. After hearing him tell me again in detail the cutting and rearranging of whole urinary system, and how I need more time to heal, I feel more confident. He told me that looking at me individually he expects improvement over the next 3 months with my incontinence, that I may never be dry but I will improve. It was interesting how he and his nurse knew what I was feeling when they said that it was around about this time after surgery that most men begin to really get discouraged with leakage but to not give up. At this point I will be happy to see a decrease just so I can resume normal activities without the interruption of rushing to make it to the bathroom to either urinate or participate in the "pad change relay" as I call it these days. It's going to be interesting when I get back on my mountain bike or start hiking again. I guess this is a work in progress. I wish all the men on this site who are dealing with this the very best and all my support. Like my wife says though,"You made it through to the other side, you're alive." "Let's celebrate."
  • Unknown
    Unknown
    #13
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