The Pad Diaries

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  • muttsrule
    muttsrule Member Posts: 52
    Trew said:

    Two Roads...
    Diary for 5/21/2010

    I see I woke up with a pad on- exercised in it and then made 6 pad changes during the day.
    Most of my activity was very lite and the pad was generally more than 50% saturated.

    Typical day since the scoping and removal of scare tissue 2 weeks ago, close to that before I had that done.

    So it is seen there are two roads after surgery, one is dry, and the other goes into the lowlands or swamp.

    Everyone, enjoy the day the Lord has given.

    (Note: I posted this because there are so many dry stories posted I did not want anyone feeling they were the only ones wet. Being wet can be so discouraging, so overwhelming. One of the potential side effects of any PC surgery is incontinence. That's just how it is for some of us.)

    woke up with a pad on...
    I so hope this is a double-entendre, and, after reading your subsequent posts, suspect it is. John in Seattle.
  • Trew
    Trew Member Posts: 932 Member
    muttsrule said:

    laugh it up!
    Trew, the sense of humor you and Skid Row Tom show is the strongest medicine in your cabinet. Still, I'll pray for your miseries to cease, even though that means less reading pleasure for me. John in Seattle, whose arsenal of smart remarks and wisecracks made 5 weeks on the catheter bearable.

    tomorrow is another visit
    tomorrow is another visit with the uro/surgeon. the self cath is impossible, no way I can get that 16 french in. I leak all the lime and urinate very little. I have my diary all ready to give him and then I will see what humorus thought comes to mind as the exam develops......

    Pardon me, I do get excitable when I'm off Xanax.
  • Trew
    Trew Member Posts: 932 Member
    Diary for June 16, 2010
    Back to see Dr. Bour this morning. The stricture has grown back. Common with radiation patients. No problem, just lie back on the table and we'll widen the stricture for you! he does smile nicely. laughs at me weak jokes and no, he does not pay dividends to "share" holders- that would be me.

    So, that is over with. Back to the self cath. I could end up having surgery if the stricture comes back. And then the AUS.

    Anyone remember the song, "You know it don't come easy?"

    So much for this day. I think the pipe is a bit swollen- this afternoon I can hardly get anything out.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    Diary for June 16, 2010
    Back to see Dr. Bour this morning. The stricture has grown back. Common with radiation patients. No problem, just lie back on the table and we'll widen the stricture for you! he does smile nicely. laughs at me weak jokes and no, he does not pay dividends to "share" holders- that would be me.

    So, that is over with. Back to the self cath. I could end up having surgery if the stricture comes back. And then the AUS.

    Anyone remember the song, "You know it don't come easy?"

    So much for this day. I think the pipe is a bit swollen- this afternoon I can hardly get anything out.

    Hang In There
    Hang in there my friend, I believe it will get better. You've got the positive attitude and you are keeping your sense of humor. You are in my thoughts and prayers.
    Remember, Doctors treat, GOD HEALS

    JR
  • Trew
    Trew Member Posts: 932 Member
    Trew said:

    Diary for June 16, 2010
    Back to see Dr. Bour this morning. The stricture has grown back. Common with radiation patients. No problem, just lie back on the table and we'll widen the stricture for you! he does smile nicely. laughs at me weak jokes and no, he does not pay dividends to "share" holders- that would be me.

    So, that is over with. Back to the self cath. I could end up having surgery if the stricture comes back. And then the AUS.

    Anyone remember the song, "You know it don't come easy?"

    So much for this day. I think the pipe is a bit swollen- this afternoon I can hardly get anything out.

    Here is the funniest thing ever!!
    I tried a self cath this afternoon- no go. Very discoraging. However, I had another self catheter to try (and a 3rd one now, too) so I reserved a bit of personal time this evening just for that purpose and, with the new cath- the stiffest of the three- yes, it was a bit painful, but after slwoly working the cath in for about ten minutes, or was it 50 minutes? I got the cath into paydirt!! Urine came out- I was a success!! 75cc's of success!

    Now tell me, how could anyone in their right mind be happy about THAT? What in the world has happened to me?

    Its all beyond me now.

    But tonight I am a happy man and that sure should seem funny to someone.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    Here is the funniest thing ever!!
    I tried a self cath this afternoon- no go. Very discoraging. However, I had another self catheter to try (and a 3rd one now, too) so I reserved a bit of personal time this evening just for that purpose and, with the new cath- the stiffest of the three- yes, it was a bit painful, but after slwoly working the cath in for about ten minutes, or was it 50 minutes? I got the cath into paydirt!! Urine came out- I was a success!! 75cc's of success!

    Now tell me, how could anyone in their right mind be happy about THAT? What in the world has happened to me?

    Its all beyond me now.

    But tonight I am a happy man and that sure should seem funny to someone.

    Funny How Your Perspective Changes
    It's funny how your perspective changes such as what you are happy about. I am happy when I void in the toilet and it's a good stream, or those times when I use less pads in one day.

    Let's just hope for better days like when we don't need diapers and pads. I am working on kegels daily and trying to increase the number of reps. I believe there is a light at the end of the tunnel and someday I will be dry and only void in the toilet when I need to.

    Have a wonderful weekend and a happy fathers day!

    JR
  • Trew
    Trew Member Posts: 932 Member
    JR1949 said:

    Funny How Your Perspective Changes
    It's funny how your perspective changes such as what you are happy about. I am happy when I void in the toilet and it's a good stream, or those times when I use less pads in one day.

    Let's just hope for better days like when we don't need diapers and pads. I am working on kegels daily and trying to increase the number of reps. I believe there is a light at the end of the tunnel and someday I will be dry and only void in the toilet when I need to.

    Have a wonderful weekend and a happy fathers day!

    JR

    half full/ half empty thing, I guess
    I can go all day and not void- just a constant dripping now. and then the self cath at the end of the day to top off the experience. It was a bit dificult tonight. If the stricture closes off the opening again I think I get surgery. I have to gt the stricture problem solved before I can get the AUS installed.

    So this was day 2 of self cath, 28 to go. Yes, pun intended!
  • Trew
    Trew Member Posts: 932 Member
    Help!! I'm Drowning!
    Diary Entry, June 21, 2010

    Ever since the 2nd widening of strictures last week I am running almost continually. No longer do I wear a pad in my underwear though. Now I am waring a pad in my depends. I can soak through in two hours- pad and depends. I can't find my kegel muscles, let alone do them. The self cath is somewhat painful, but at least I am getting in now since last week's procedure #2. From the time I get up until I go to bed I have no urge to urinate it is dripping (running) so much.

    Now, you ask, what is the cause of the strictures in the bladder neck? Radiation. And why did I have radiation? Because I caught a cold, I guess.

    I see the uro again in early July to see how the self cath is going. There is a surgery that can be done to stop strictures. And then, maybe, I can get on to having the AUS installed.

    But right now, this week, I am drowning in my own urine. My, that does sound sickening, doesn't it.

    So it goes.....
  • aguylikeyou
    aguylikeyou Member Posts: 10
    Trew said:

    Help!! I'm Drowning!
    Diary Entry, June 21, 2010

    Ever since the 2nd widening of strictures last week I am running almost continually. No longer do I wear a pad in my underwear though. Now I am waring a pad in my depends. I can soak through in two hours- pad and depends. I can't find my kegel muscles, let alone do them. The self cath is somewhat painful, but at least I am getting in now since last week's procedure #2. From the time I get up until I go to bed I have no urge to urinate it is dripping (running) so much.

    Now, you ask, what is the cause of the strictures in the bladder neck? Radiation. And why did I have radiation? Because I caught a cold, I guess.

    I see the uro again in early July to see how the self cath is going. There is a surgery that can be done to stop strictures. And then, maybe, I can get on to having the AUS installed.

    But right now, this week, I am drowning in my own urine. My, that does sound sickening, doesn't it.

    So it goes.....

    I feel bad for you. Although
    I feel bad for you. Although I am not having as bad problem as you are I seem to get the urge to go and then can't really stop it. Leaks pretty good during the night. Will be 3weeks post op on Thursday. Have call to uro and waiting for his sage advice. This really is frustrating. Hope you can get your situation corrected. Joe
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    Help!! I'm Drowning!
    Diary Entry, June 21, 2010

    Ever since the 2nd widening of strictures last week I am running almost continually. No longer do I wear a pad in my underwear though. Now I am waring a pad in my depends. I can soak through in two hours- pad and depends. I can't find my kegel muscles, let alone do them. The self cath is somewhat painful, but at least I am getting in now since last week's procedure #2. From the time I get up until I go to bed I have no urge to urinate it is dripping (running) so much.

    Now, you ask, what is the cause of the strictures in the bladder neck? Radiation. And why did I have radiation? Because I caught a cold, I guess.

    I see the uro again in early July to see how the self cath is going. There is a surgery that can be done to stop strictures. And then, maybe, I can get on to having the AUS installed.

    But right now, this week, I am drowning in my own urine. My, that does sound sickening, doesn't it.

    So it goes.....

    Kegels
    If you are interested, go to www.kegelsformen.com. You use the same the same muscles that you use when you have to urinate, but cannot get to the restroom right away, you "hold it".
    This website tells you the way and how many reps, etc. I admit I was told to practice my kegels before my surgery and really did not very often. Now I regret it. I think it's just like any muscle, you have to work out and get it strong again. You can do your kegels while you are driving or sitting watching TV or whatever. I believe my leaking is getting better, but I am nowhere back to normal yet.

    You are in my thoughts and prayers, TREW. Wish you better days with the cath and the day when you do not need it or pads or Depends. As the Beach Boys song says, "Wouldn't It Be Nice"
  • Trew
    Trew Member Posts: 932 Member

    I feel bad for you. Although
    I feel bad for you. Although I am not having as bad problem as you are I seem to get the urge to go and then can't really stop it. Leaks pretty good during the night. Will be 3weeks post op on Thursday. Have call to uro and waiting for his sage advice. This really is frustrating. Hope you can get your situation corrected. Joe

    I had surgery on march 23,
    I had surgery on march 23, 2009. Radiation between Nov 15, 2009- Jan 15, 2010.

    this is more than a few weeks post-op. I soak a pad every hour now.

    I feel like, like, well, i am being washed away.....

    I am a bit discouraged today.
  • muttsrule
    muttsrule Member Posts: 52
    Trew said:

    Help!! I'm Drowning!
    Diary Entry, June 21, 2010

    Ever since the 2nd widening of strictures last week I am running almost continually. No longer do I wear a pad in my underwear though. Now I am waring a pad in my depends. I can soak through in two hours- pad and depends. I can't find my kegel muscles, let alone do them. The self cath is somewhat painful, but at least I am getting in now since last week's procedure #2. From the time I get up until I go to bed I have no urge to urinate it is dripping (running) so much.

    Now, you ask, what is the cause of the strictures in the bladder neck? Radiation. And why did I have radiation? Because I caught a cold, I guess.

    I see the uro again in early July to see how the self cath is going. There is a surgery that can be done to stop strictures. And then, maybe, I can get on to having the AUS installed.

    But right now, this week, I am drowning in my own urine. My, that does sound sickening, doesn't it.

    So it goes.....

    Persevere!
    Trew, I have nothing useful to say. Your situation is so depressing. I'm just tuning in to offer support, best wishes, prayers, good vibes, and whatever else I can think of. I hope this tiny bit of encouragement helps somehow. Why did you choose radiation? With all the options out there, all of them sure of success, why NOT choose radiation?! I hope you're not "blaming" yourself for making a supposedly bad choice. My thumb is up for you! Persevere! Keep on seeking out the 'funny' in your plight. John in Seattle
  • Trew
    Trew Member Posts: 932 Member
    muttsrule said:

    Persevere!
    Trew, I have nothing useful to say. Your situation is so depressing. I'm just tuning in to offer support, best wishes, prayers, good vibes, and whatever else I can think of. I hope this tiny bit of encouragement helps somehow. Why did you choose radiation? With all the options out there, all of them sure of success, why NOT choose radiation?! I hope you're not "blaming" yourself for making a supposedly bad choice. My thumb is up for you! Persevere! Keep on seeking out the 'funny' in your plight. John in Seattle

    Choose?
    I had surgery with positive margins. Was placed on hormone shots for one year- stopped that the end of April- hot flashes are worse than ever right now.

    Radiation was for bladder neck invasion- no choice there. Sometimes this is just a spectator sport.

    I'll take a xanax tonight- maybe tomorrow will be better. I am just so wet right now I can hardly stand it.

    How wet? I think I have had only one urge to void all day and that wasn't much. It just leaks out.

    Maybe I need to eat more dry creakers? :)
  • Trew
    Trew Member Posts: 932 Member
    June 23, 2010. 11:10 pm.
    I

    June 23, 2010. 11:10 pm.

    I drip so much it scares me to go out any more. I can soak a pad through in an hour sometimes.
    My wife picked up more pads today- there was a sale somewhere. I wonder if she ever feels embrassed about buying pads? I do- like people are looking at me and thinking..... Well, they are.

    In the morning at 8:30 I have to be at the Continence Center to see if they can rehabilate me. 61 years old and basicly in diapers. It is a humilating position to be in. "Hi Trew, how you doing?" I answer, "Fine." So it goes.

    The self cath was hard tonight. Last night I had some blood with it, but that was witrh the stiffer cath. I need to use the stiffer cath, that is all there is to it. I just can not get the softer one to go in. When it goes in, I feel excited- like I have accomplished something. What I am trying to avoid is another cleaning of the plumbing by the doc or surgery if the strictures grow back again.

    "And," I ask myself, "Just how did we get into this predictament?" Yes, we knows, we knows.

    Another day in. Maybe tomorrow.......
  • Trew
    Trew Member Posts: 932 Member
    June 24, 2010
    This morning I was in to the Continence Center.
    The visit began with a series of questions.
    I then dropped my pants and a probe was inserted into my rectum.
    It measured the strength of my kegels. They were excellent.

    Then the tech used a new setting that activated an electrical pulse and the stregth of the pulse was increased until it began uncomfortable, then backed down a bit and I began 15 minutes of intermitant stimulation and then a pause, like 15 sec on, 10- 15 sec off.

    While sitting in the chair I soaked the pad under me. She recognized I have a difficult problem. One of the worst she has seen, she said. It is complicated by the radiation.

    So today I learned that radiation is serious stuff. It is not just an injection or something- it has side effects and complications. I have complication. Treatment is to continue weekly for at least the next 3 weeks, then evaluate the benefit.

    Most guys with PC miss all this. I am getting so much more out of my PC. Truely, this is an adventure.

    I can't wait to see what tomorrow brings.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    June 24, 2010
    This morning I was in to the Continence Center.
    The visit began with a series of questions.
    I then dropped my pants and a probe was inserted into my rectum.
    It measured the strength of my kegels. They were excellent.

    Then the tech used a new setting that activated an electrical pulse and the stregth of the pulse was increased until it began uncomfortable, then backed down a bit and I began 15 minutes of intermitant stimulation and then a pause, like 15 sec on, 10- 15 sec off.

    While sitting in the chair I soaked the pad under me. She recognized I have a difficult problem. One of the worst she has seen, she said. It is complicated by the radiation.

    So today I learned that radiation is serious stuff. It is not just an injection or something- it has side effects and complications. I have complication. Treatment is to continue weekly for at least the next 3 weeks, then evaluate the benefit.

    Most guys with PC miss all this. I am getting so much more out of my PC. Truely, this is an adventure.

    I can't wait to see what tomorrow brings.

    I Can Relate
    Trew
    I too am 61 and I can relate to being this age and wearing diapers and pads. I hope the Continence Center can help you. I am wearing diaper and pads and going through average of 3-5 pads per day. I really sympathize with your condition soaking a pad in an hour.
    I know it seems rough now, but keep a positive attitude and beat this continence thing.
    Remember you beat PC, so just say "D**n the torpedoes, full speed ahead" and beat this continence roadblock.

    You are in my thoughts and prayers.

    JR
  • Trew
    Trew Member Posts: 932 Member
    JR1949 said:

    I Can Relate
    Trew
    I too am 61 and I can relate to being this age and wearing diapers and pads. I hope the Continence Center can help you. I am wearing diaper and pads and going through average of 3-5 pads per day. I really sympathize with your condition soaking a pad in an hour.
    I know it seems rough now, but keep a positive attitude and beat this continence thing.
    Remember you beat PC, so just say "D**n the torpedoes, full speed ahead" and beat this continence roadblock.

    You are in my thoughts and prayers.

    JR

    The lady tech at the CC told
    The lady tech at the CC told me i was one of the worst cases she has seen. I asked her if anyone like me has come back to gaining control. She told me one man- but he never had radiation. I think the radiation is the bane in all this.

    I am using 7- 10 pads a day- they are about saturated when I change- it is just getting to be too much. I need to talk to my uro about skipping the self cath and doing the surgical fix so I can get on and have the AUS installed. The bladder is holding nothing back right now. I self cath and get 5 cc. There is nothing in there.

    But then I get really scared- what if that doesn't work and this is the rest of my life? If that is the case, I am not so sure surgery and treatment was the best option for me. Quality of life is beginning to appear more important to me than just life in any condition.

    Such a strange thing to say.....

    I'm not sure I even understand it. I just know what I am not living is not exceptable.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    The lady tech at the CC told
    The lady tech at the CC told me i was one of the worst cases she has seen. I asked her if anyone like me has come back to gaining control. She told me one man- but he never had radiation. I think the radiation is the bane in all this.

    I am using 7- 10 pads a day- they are about saturated when I change- it is just getting to be too much. I need to talk to my uro about skipping the self cath and doing the surgical fix so I can get on and have the AUS installed. The bladder is holding nothing back right now. I self cath and get 5 cc. There is nothing in there.

    But then I get really scared- what if that doesn't work and this is the rest of my life? If that is the case, I am not so sure surgery and treatment was the best option for me. Quality of life is beginning to appear more important to me than just life in any condition.

    Such a strange thing to say.....

    I'm not sure I even understand it. I just know what I am not living is not exceptable.

    HANG IN THERE
    Hang in there, God doesn't give you something that he knows you cannot handle. I know your troubles look insurmountable, but remember, behind every cloud there is a silver lining.
    I feel your pain and wish I could make all of the bad go away.

    I know it was last year about this time last when my wife was given the diagnosis that she had stage four recurrent metatastic melanoma after 18 years. I remember the day the doctor called her after after the biopsy that she was stage 4. She was crying and told me, "You know the only way I can survive this is through the grace of God." (she was right)
    I admit that I was not sure if last year's 4th of July was going to be her last.
    Well she endured the IL2 chemotherapy from August to the day before Thanksgiving. She has had three CT/PET scans since then. The last was June 14 and she is in remission and scans are all clear, all 3 tumors are gone. PRAISE GOD! As someone said, stage 4 is just a number that I am gonna beat.

    First thing Monday, call your urologist and just tell him what you want to do about the self cath and getting the AUS installed.

    You will continue to be in my thoughts and prayers.
    JR
  • Trew
    Trew Member Posts: 932 Member
    JR1949 said:

    HANG IN THERE
    Hang in there, God doesn't give you something that he knows you cannot handle. I know your troubles look insurmountable, but remember, behind every cloud there is a silver lining.
    I feel your pain and wish I could make all of the bad go away.

    I know it was last year about this time last when my wife was given the diagnosis that she had stage four recurrent metatastic melanoma after 18 years. I remember the day the doctor called her after after the biopsy that she was stage 4. She was crying and told me, "You know the only way I can survive this is through the grace of God." (she was right)
    I admit that I was not sure if last year's 4th of July was going to be her last.
    Well she endured the IL2 chemotherapy from August to the day before Thanksgiving. She has had three CT/PET scans since then. The last was June 14 and she is in remission and scans are all clear, all 3 tumors are gone. PRAISE GOD! As someone said, stage 4 is just a number that I am gonna beat.

    First thing Monday, call your urologist and just tell him what you want to do about the self cath and getting the AUS installed.

    You will continue to be in my thoughts and prayers.
    JR

    JR, that is a great story-
    JR, that is a great story- thanks for sharing.

    Today- update.

    Maybe the electric stimulation helped- I am using less pads todays- less than I have used for some time which is very promising.

    I am still getting the Eligard mood kick in the evenings a lot. yesterday was one of those days. Today is not so gloomy.
  • Trew
    Trew Member Posts: 932 Member
    The Continence Center has me
    The Continence Center has me recording input, output (very little) and number of pad changes.

    Friday- day after treatment: 5 pads
    Saturday: 10 pads
    Sunday (today): I'm on my 8th pad right now.


    So it goes.