The Pad Diaries

Trew
Trew Member Posts: 931 Member
edited March 2014 in Prostate Cancer #1
Exciting topic, I'm sure. For me, I have started a daily pad diary noting time of change, activity, and saturation level. I have been at it now for a full 24 hrs.

Hey, you!! Stay out of my Diary!! as a totally different kind of meaning now.

I hope this will help in the evaluation process as I get more serious about getting a AUS installed.

I hate PC! I do, I do, I do!

Overall I am trying to stay very positive. :)
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Comments

  • fathersson
    fathersson Member Posts: 121
    Hang in the bros
    Good luck with that.. as for me, slow improvementafter surgery almost 3 weeks ago.. 1-2 pads a day.
  • Trew
    Trew Member Posts: 931 Member
    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.)
  • JR1949
    JR1949 Member Posts: 230
    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.)

    Scoping Friday
    Hi Trew,
    I had my (cystoscopy, urethal dilation, transurethal neck contracture), in our terms scoping and removal of scar tissue last Friday 5/21. Of course because of the scar tissue removal by laser, I had the "pleasure" of a catheter until this morning. Well when the nurse removed the catheter, whoosh came a minor flood of urine. This took place around 9:30 am. It is now 3:50 pm and I have not had the urge to urinate, yet I have a drip going on constantly and cannot even force a good pee. Just called uro's office and they told me, "we usually tell our patients to drink 8 oz. glass every 2 hours". Gee thanks, did not tell me. So am hoping that things down there will return to normal sometime this evening or later. I have hope that my situation will be better soon. Before Friday doc confirmed that I was not emptying my bladder which would explain the drips in the pad/diaper. Uro told my wife after the procedure that it should makes things better, just not sure how much better.
    Did you have any problems after removal of the catheter?

    I'll let you know how it goes for me during the next few days. I hope my incontinence will be better or gone, whatever.
  • Trew
    Trew Member Posts: 931 Member
    JR1949 said:

    Scoping Friday
    Hi Trew,
    I had my (cystoscopy, urethal dilation, transurethal neck contracture), in our terms scoping and removal of scar tissue last Friday 5/21. Of course because of the scar tissue removal by laser, I had the "pleasure" of a catheter until this morning. Well when the nurse removed the catheter, whoosh came a minor flood of urine. This took place around 9:30 am. It is now 3:50 pm and I have not had the urge to urinate, yet I have a drip going on constantly and cannot even force a good pee. Just called uro's office and they told me, "we usually tell our patients to drink 8 oz. glass every 2 hours". Gee thanks, did not tell me. So am hoping that things down there will return to normal sometime this evening or later. I have hope that my situation will be better soon. Before Friday doc confirmed that I was not emptying my bladder which would explain the drips in the pad/diaper. Uro told my wife after the procedure that it should makes things better, just not sure how much better.
    Did you have any problems after removal of the catheter?

    I'll let you know how it goes for me during the next few days. I hope my incontinence will be better or gone, whatever.

    My doc didn't use the laser-
    My doc didn't use the laser- he had another method perfected, I was told by another poster here, behind the Iron Curtain- I think his words were "in some Eastern European countyr."

    And I have been dripping a LOT more since the procedure which was two weeks ago.

    so it goes. I wonder what "they" will do to me next?
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    My doc didn't use the laser-
    My doc didn't use the laser- he had another method perfected, I was told by another poster here, behind the Iron Curtain- I think his words were "in some Eastern European countyr."

    And I have been dripping a LOT more since the procedure which was two weeks ago.

    so it goes. I wonder what "they" will do to me next?

    Dripping a LOT more too
    So far today I have had to change pads on the average every 2 hours and sometimes the diaper too due to leakage on the sides. I even set the alarm so I would wake up last night and not leak on the bed. I am sleeping with a pee pad from my grandchildrens days sleeping here. Only good thing is that I am now able to pee sometimes when I go to bathroom. Before the scope and procedure I was averaging 3-4 pads per day and usually one diaper per day. My Uro suggested scoping and removal of any scar tissue because I was not emptying my bladder. Like you said what will "they" do to me next?

    Of course doc told my wife after procedure that he thought this might help, did not know how much. Perhaps after the area of my uretha he lasered heals I will have some control of my bladder. Plan to call uro's office and ask what I should do, what I should expect.
  • Trew
    Trew Member Posts: 931 Member
    JR1949 said:

    Dripping a LOT more too
    So far today I have had to change pads on the average every 2 hours and sometimes the diaper too due to leakage on the sides. I even set the alarm so I would wake up last night and not leak on the bed. I am sleeping with a pee pad from my grandchildrens days sleeping here. Only good thing is that I am now able to pee sometimes when I go to bathroom. Before the scope and procedure I was averaging 3-4 pads per day and usually one diaper per day. My Uro suggested scoping and removal of any scar tissue because I was not emptying my bladder. Like you said what will "they" do to me next?

    Of course doc told my wife after procedure that he thought this might help, did not know how much. Perhaps after the area of my uretha he lasered heals I will have some control of my bladder. Plan to call uro's office and ask what I should do, what I should expect.

    JR, It is a very challenging
    JR, It is a very challenging condition to live with. I went down to Wall Mart and picked up 3 pads- something like 3 x 5 or something like that I always have under my sheet. Most nights I do not leak but once in awhile I'm happy to have had the protection.

    When the hormone shots were in full bore the combination of the emotional side effects of the shot combined with the dribbling were almost too much for me at times. I confess- I broke down and cried many times when I was alone. I'm just in a state of surrender right now- resigned this is my fate- I picked the wrong doctor of something.

    I see the uro in the morning for a pee volumne test but I don't think the stream is much better since the first roto router job he did on me.

    You do have my sympathies, JR. This is no easy affliction to bear.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    JR, It is a very challenging
    JR, It is a very challenging condition to live with. I went down to Wall Mart and picked up 3 pads- something like 3 x 5 or something like that I always have under my sheet. Most nights I do not leak but once in awhile I'm happy to have had the protection.

    When the hormone shots were in full bore the combination of the emotional side effects of the shot combined with the dribbling were almost too much for me at times. I confess- I broke down and cried many times when I was alone. I'm just in a state of surrender right now- resigned this is my fate- I picked the wrong doctor of something.

    I see the uro in the morning for a pee volumne test but I don't think the stream is much better since the first roto router job he did on me.

    You do have my sympathies, JR. This is no easy affliction to bear.

    Have you asked your urologist about PT
    Trew, yes agreed, this is a very challenging condition to live with and you have my sympathy too.
    Have you asked your urologist about Physical Therapy? I just read in subject REHAB posting today that two guys had PT and it helped. Now they did this preop and postop.
    I recently asked my uro about PT and the said it did not help. Well obviously it does. I intend to ask my uro again and/or ask for a second opinion.
  • Trew
    Trew Member Posts: 931 Member
    JR1949 said:

    Have you asked your urologist about PT
    Trew, yes agreed, this is a very challenging condition to live with and you have my sympathy too.
    Have you asked your urologist about Physical Therapy? I just read in subject REHAB posting today that two guys had PT and it helped. Now they did this preop and postop.
    I recently asked my uro about PT and the said it did not help. Well obviously it does. I intend to ask my uro again and/or ask for a second opinion.

    Uro Update
    I was in to see the uro this morning. The Urine flow looks fine. He took my diary away from me for his records. this is what he said:

    We can try PT and bladder control therapy but it probably will not do much good.

    That I am to do a self cath 1x a day for a month, the 3x a week for a month and then 1x a week for month to keep scar tissue from reforming. (Why does this have to be done to me?)

    He has done over 200 AMS 800 surgeries and he showed me the device. so very nice.

    After radiation he likes to wait at least 6 months before installing one to let tissue settle down. I am looking at having the AUS done the end of October, early November.

    His observations from watching patients is that the more nerve bundles are spared, the less drip afterwards. That those important male nerves do more than just provide erections but no one really understands the relationship there yet between those nerves and bladder control. I lost all the nerves on one side.

    At the time of the roto router procedure my uretha was a 7 and he opened it to a 21 in french units. He wants to keep it open- thus the self cath for awhile. The bladder looked good.

    The greatest risk of tissue failure after installation is to those patients who have had radiation. That is me.

    I know I am rather upset about the self cath procedure. In fact I just took a xanax to let things settle down for the day. I am upset that the need for the AUS is now finalized and in the works for this year- one of those good/bad things in life.

    Notice that my uro agreed with yours about the effectiveness of PT. He will have me try it anyway. Maybe between now and the end of October a miracle will happen.

    I see him again in 6 weeks.

    I do hate PC.

    JR, I know pretty much what you are going through. What a fellowship to share.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    Uro Update
    I was in to see the uro this morning. The Urine flow looks fine. He took my diary away from me for his records. this is what he said:

    We can try PT and bladder control therapy but it probably will not do much good.

    That I am to do a self cath 1x a day for a month, the 3x a week for a month and then 1x a week for month to keep scar tissue from reforming. (Why does this have to be done to me?)

    He has done over 200 AMS 800 surgeries and he showed me the device. so very nice.

    After radiation he likes to wait at least 6 months before installing one to let tissue settle down. I am looking at having the AUS done the end of October, early November.

    His observations from watching patients is that the more nerve bundles are spared, the less drip afterwards. That those important male nerves do more than just provide erections but no one really understands the relationship there yet between those nerves and bladder control. I lost all the nerves on one side.

    At the time of the roto router procedure my uretha was a 7 and he opened it to a 21 in french units. He wants to keep it open- thus the self cath for awhile. The bladder looked good.

    The greatest risk of tissue failure after installation is to those patients who have had radiation. That is me.

    I know I am rather upset about the self cath procedure. In fact I just took a xanax to let things settle down for the day. I am upset that the need for the AUS is now finalized and in the works for this year- one of those good/bad things in life.

    Notice that my uro agreed with yours about the effectiveness of PT. He will have me try it anyway. Maybe between now and the end of October a miracle will happen.

    I see him again in 6 weeks.

    I do hate PC.

    JR, I know pretty much what you are going through. What a fellowship to share.

    A fellowship to share
    We do have a fellowship to share.

    Thanks for the information, a lot of great valuable stuff.

    Here's my history:
    PSA preop 22, PSA postop 0.008 (not even measurable :-)
    radical prostatectomy March 1, 2009
    cath approx 14 days following surgery
    pads per day 5-8 first five months
    pads per day 3-4 up to 5/21/10
    scope & roto rooter May 21, 2010, left w/cath
    cath out May 24, 2010
    pads per day 10 5/24-25/10
    pads per day 5 as of 5:30 pm 5/26/10 :-)

    I think I hate catheters more than I hate incontinence.

    Looking promising now maybe and I am now able to pee a strong stream for the first time since prior to my surgery. Uro told me to drink 8 oz. of water every 2 hours. WON'T drink anything after 7:00 pm.....almost had bad accident early am today. I plan to give this procedure some time before I do anything else. I need to do more kegels per day. It's hard for me to remember.

    I am not going to have any slings or artificial sphincter at least for another six or more months. But I still want to get second opinion about physical therapy. Let me know how the PT works for you. Maybe a miracle will happen for you between now and end of October. You never know, miracles do happen. We just have to have faith and believe.
  • Trew
    Trew Member Posts: 931 Member
    JR1949 said:

    A fellowship to share
    We do have a fellowship to share.

    Thanks for the information, a lot of great valuable stuff.

    Here's my history:
    PSA preop 22, PSA postop 0.008 (not even measurable :-)
    radical prostatectomy March 1, 2009
    cath approx 14 days following surgery
    pads per day 5-8 first five months
    pads per day 3-4 up to 5/21/10
    scope & roto rooter May 21, 2010, left w/cath
    cath out May 24, 2010
    pads per day 10 5/24-25/10
    pads per day 5 as of 5:30 pm 5/26/10 :-)

    I think I hate catheters more than I hate incontinence.

    Looking promising now maybe and I am now able to pee a strong stream for the first time since prior to my surgery. Uro told me to drink 8 oz. of water every 2 hours. WON'T drink anything after 7:00 pm.....almost had bad accident early am today. I plan to give this procedure some time before I do anything else. I need to do more kegels per day. It's hard for me to remember.

    I am not going to have any slings or artificial sphincter at least for another six or more months. But I still want to get second opinion about physical therapy. Let me know how the PT works for you. Maybe a miracle will happen for you between now and end of October. You never know, miracles do happen. We just have to have faith and believe.

    You are very hopeful-
    You are very hopeful- thank-you. I was not expecting the self cath stuff- just another emotional slam/dunk for me. I took the xanax and slept this afternoon 2- 3 hours. I"m more relaxed right now than before the xanax. Your pad count looks like its turning in the right direction- I do hope it continues.

    And here is to No More Surprises!

    for both of us.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Trew said:

    Uro Update
    I was in to see the uro this morning. The Urine flow looks fine. He took my diary away from me for his records. this is what he said:

    We can try PT and bladder control therapy but it probably will not do much good.

    That I am to do a self cath 1x a day for a month, the 3x a week for a month and then 1x a week for month to keep scar tissue from reforming. (Why does this have to be done to me?)

    He has done over 200 AMS 800 surgeries and he showed me the device. so very nice.

    After radiation he likes to wait at least 6 months before installing one to let tissue settle down. I am looking at having the AUS done the end of October, early November.

    His observations from watching patients is that the more nerve bundles are spared, the less drip afterwards. That those important male nerves do more than just provide erections but no one really understands the relationship there yet between those nerves and bladder control. I lost all the nerves on one side.

    At the time of the roto router procedure my uretha was a 7 and he opened it to a 21 in french units. He wants to keep it open- thus the self cath for awhile. The bladder looked good.

    The greatest risk of tissue failure after installation is to those patients who have had radiation. That is me.

    I know I am rather upset about the self cath procedure. In fact I just took a xanax to let things settle down for the day. I am upset that the need for the AUS is now finalized and in the works for this year- one of those good/bad things in life.

    Notice that my uro agreed with yours about the effectiveness of PT. He will have me try it anyway. Maybe between now and the end of October a miracle will happen.

    I see him again in 6 weeks.

    I do hate PC.

    JR, I know pretty much what you are going through. What a fellowship to share.

    Self-catheterization
    This self-cath stuff sounds familiar. It's the same road I traveled. Did the doctor give you advice as to what gel to use and caths to use? They gave shaped weird on the end. I ordered some off the Internet and was much more successful. The self-cath thing is no picnic, but it's do-able. The decision to get an AUS is agonizing, but the end of your incontinent hell is in sight.
  • Trew
    Trew Member Posts: 931 Member

    Self-catheterization
    This self-cath stuff sounds familiar. It's the same road I traveled. Did the doctor give you advice as to what gel to use and caths to use? They gave shaped weird on the end. I ordered some off the Internet and was much more successful. The self-cath thing is no picnic, but it's do-able. The decision to get an AUS is agonizing, but the end of your incontinent hell is in sight.

    The Uro's office is in a
    The Uro's office is in a hospital complex and very close to the Continence Center. There I will receive personalized hands on instruction and a self cath kit. So I am not the only one that has had to do this? It all seems a little bit de-humanizing to me. Well, if others have done this and gotten past it- so can I.

    Certainly nothing to look forward to, but I will be able to do it. "I think I can."

    The doctor was so kind to me today. I was touched by his compassion.

    I am so glad I changed doctor's. Looking back, what a difference in approach between the two offices and doctors.
  • BRONX52
    BRONX52 Member Posts: 156
    Trew said:

    The Uro's office is in a
    The Uro's office is in a hospital complex and very close to the Continence Center. There I will receive personalized hands on instruction and a self cath kit. So I am not the only one that has had to do this? It all seems a little bit de-humanizing to me. Well, if others have done this and gotten past it- so can I.

    Certainly nothing to look forward to, but I will be able to do it. "I think I can."

    The doctor was so kind to me today. I was touched by his compassion.

    I am so glad I changed doctor's. Looking back, what a difference in approach between the two offices and doctors.

    DOCTORS
    HAVING A DOCTOR THAT TREATS YOU LIKE A HUMAN BEING RATHER THAN A STATISTIC MAKES A WORLD OF DIFFERENCE. GOOD LUCK TREW AND I HOPE THINGS GET BETTER FOR YOU--DAN
  • Trew
    Trew Member Posts: 931 Member
    BRONX52 said:

    DOCTORS
    HAVING A DOCTOR THAT TREATS YOU LIKE A HUMAN BEING RATHER THAN A STATISTIC MAKES A WORLD OF DIFFERENCE. GOOD LUCK TREW AND I HOPE THINGS GET BETTER FOR YOU--DAN

    Dan, thanks. And compassion
    Dan, thanks. And compassion may not make a doctor more skillful at his trade, but he does make me feel more comfortable about the doctor.

    Xanax is powerful stuff. That helps, too.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Trew said:

    The Uro's office is in a
    The Uro's office is in a hospital complex and very close to the Continence Center. There I will receive personalized hands on instruction and a self cath kit. So I am not the only one that has had to do this? It all seems a little bit de-humanizing to me. Well, if others have done this and gotten past it- so can I.

    Certainly nothing to look forward to, but I will be able to do it. "I think I can."

    The doctor was so kind to me today. I was touched by his compassion.

    I am so glad I changed doctor's. Looking back, what a difference in approach between the two offices and doctors.

    Self-catheterization II
    Maybe this will make you feel better. I've told people, if you're going to have surgery at Johns Hopkins, you'd better be a "real man". Immediately after my dilation procedure (for scar tissue) -- the procedure where I was awake and under no medication (other than Lidacane which they squirted up my pee pee) -- they took me into an examination room where I was given instructions on how to self-cath. To make sure I had it down, I had to perform the procedure in front of them. Remember, I had just had an ungodly painful procedure 5 minutes beforehand. I managed to do it once. And then they said, "We'd like to see you do it again just to make sure." I told them "No way" - hell, I was about ready to pass out. Then, my wife drive me 450 miles back home.
  • Trew
    Trew Member Posts: 931 Member

    Self-catheterization II
    Maybe this will make you feel better. I've told people, if you're going to have surgery at Johns Hopkins, you'd better be a "real man". Immediately after my dilation procedure (for scar tissue) -- the procedure where I was awake and under no medication (other than Lidacane which they squirted up my pee pee) -- they took me into an examination room where I was given instructions on how to self-cath. To make sure I had it down, I had to perform the procedure in front of them. Remember, I had just had an ungodly painful procedure 5 minutes beforehand. I managed to do it once. And then they said, "We'd like to see you do it again just to make sure." I told them "No way" - hell, I was about ready to pass out. Then, my wife drive me 450 miles back home.

    OUCH! OUCH! OUCH!
    That is one painful memory! At least my doc is giving me 4 weeks between procedures. I guess I now have something to be thankful for today.

    OUCH!!!

    You talk about every man's nightmare- OUCH!
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    You are very hopeful-
    You are very hopeful- thank-you. I was not expecting the self cath stuff- just another emotional slam/dunk for me. I took the xanax and slept this afternoon 2- 3 hours. I"m more relaxed right now than before the xanax. Your pad count looks like its turning in the right direction- I do hope it continues.

    And here is to No More Surprises!

    for both of us.

    No More Surprises
    I was out of town yesterday for funeral of my wife's relatives.

    Yes I agree, drink a toast to no more surprises. PC was one of most awful surprises I have experienced in my 61 years. Of course I beat it, PSA now 0.008, can't get much better than that.

    When are you scheduled for the self cath? You will be in my thoughts.
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    Dan, thanks. And compassion
    Dan, thanks. And compassion may not make a doctor more skillful at his trade, but he does make me feel more comfortable about the doctor.

    Xanax is powerful stuff. That helps, too.

    Compassionate doctors
    I agree, compassion goes a long way in your relation with a doctor. I've been fortunate that my uro cares. He even asked my wife how she was doing after the recurrent metatastic melonoma cancer. I had told him in June 09 when she was diagnosed and he told her he would pray for her.

    To update about my wife, she was diagnosed June 09 after 18 years, had four rounds of IL2 chemotherapy which consist of as many as 14 treatments, every 8 hours. She underwent the treatments starting in August and completed day before Thanksgiving. PET and CT scans March 5, results were all 3 tumors gone, in remission. Praise God! She went back to work December 14 and you never know she had the cancer by looking at her. Her energy level is back up. See my story by clicking on the blue box with JR1949.

    My wife and I have truly been blessed to have found out about our cancers early enough to be cured. To God be the glory.
  • Trew
    Trew Member Posts: 931 Member

    Self-catheterization II
    Maybe this will make you feel better. I've told people, if you're going to have surgery at Johns Hopkins, you'd better be a "real man". Immediately after my dilation procedure (for scar tissue) -- the procedure where I was awake and under no medication (other than Lidacane which they squirted up my pee pee) -- they took me into an examination room where I was given instructions on how to self-cath. To make sure I had it down, I had to perform the procedure in front of them. Remember, I had just had an ungodly painful procedure 5 minutes beforehand. I managed to do it once. And then they said, "We'd like to see you do it again just to make sure." I told them "No way" - hell, I was about ready to pass out. Then, my wife drive me 450 miles back home.

    Today is Day 1
    Today is the day I begin the self, er, well, see above. I can hardly wait. Training is at 2 this afternoon.

    And after reading the new post about being dry, I could almost cry. Sounds like the stuff 60s rock n roll songs are made of.

    Well, I will count this as day 1, that leaves only 29 left for this month.
  • lewvino
    lewvino Member Posts: 1,010
    Trew said:

    Today is Day 1
    Today is the day I begin the self, er, well, see above. I can hardly wait. Training is at 2 this afternoon.

    And after reading the new post about being dry, I could almost cry. Sounds like the stuff 60s rock n roll songs are made of.

    Well, I will count this as day 1, that leaves only 29 left for this month.

    Trew,
    Perhaps you could

    Trew,
    Perhaps you could start a new career writing country songs. This sounds like a real painful song and dance routine that you are starting down! Number 1 country song out of Nashville, Tn. The Pad Diaries. I remember back in 1973 the first trip down from Indiana to Tennessee the big hit on the radio was Dead Skunk in the middle of the road!

    Larry