Pad Diary II

Trew
Trew Member Posts: 931 Member
edited March 2014 in Prostate Cancer #1
Guards, the Pad Dairy thread is getting too heavy for this server- it takes forever to post on it any more. I am now starting the 2nd volume.

I read your last post. You and I have so much in common. I hadn't gotten a stint yet- and that hasn't been discussed with me the Ileal Conduit bag has been discussed with me. I have actually come to the place I find it preferrable to leaking all the time.

We are running on the same schedule almost. I have been scoped more times than I can keep straight this summer. And right now, the point where the cath is about to enter the bladder is hurting me more and more every day. I hum, breath heavy, sing songs, etc, while I am trying to get past that one spot of resistence- and it has only been 29 days since my OR procedure at U of MI to open it up. I see another OR visit coming up in Nov when I see the doc again- if I can hold up to then.

Guards- I wish you the very best in all this.

All this from a little think like prostate cancer- bah humbug!!
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Comments

  • Trew
    Trew Member Posts: 931 Member
    Ileal Conduit- One of the possible side effects of PC
    If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:



    I have come to the place where i think this would be better than leaking.

    I am still hoping the AUS solution will work out.

    Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

    If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.
  • hightide
    hightide Member Posts: 26
    Trew said:

    Ileal Conduit- One of the possible side effects of PC
    If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:



    I have come to the place where i think this would be better than leaking.

    I am still hoping the AUS solution will work out.

    Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

    If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.

    Ileal Conduit ?-- intresting vidio
    Hey Trew, I have been off the board for awhile, please tell me things are going well with the cath's. I am still pulling for you to get the AUS !! I had to get another computer so I could get back in touch. Regards, hightide
  • Trew
    Trew Member Posts: 931 Member
    hightide said:

    Ileal Conduit ?-- intresting vidio
    Hey Trew, I have been off the board for awhile, please tell me things are going well with the cath's. I am still pulling for you to get the AUS !! I had to get another computer so I could get back in touch. Regards, hightide

    I wish those caths had a
    I wish those caths had a monitor in them so you could see inside. I do know that resistence is gradually increasing and I am getting concerned. I do not return to the U of MI until Nov. 1. then I get scoped again and then I will find out what comes next.
    Dum-dee-dum-dum...

    Yes, a little sound effects to highlight the drama of all this.
  • hightide
    hightide Member Posts: 26
    Trew said:

    I wish those caths had a
    I wish those caths had a monitor in them so you could see inside. I do know that resistence is gradually increasing and I am getting concerned. I do not return to the U of MI until Nov. 1. then I get scoped again and then I will find out what comes next.
    Dum-dee-dum-dum...

    Yes, a little sound effects to highlight the drama of all this.

    Cath's with a camera
    Thanks for the reply, do not like that the resistance is increasing. Was it ever discussed to have an indwelling catheter to stay in place and let the healing take place around the catheter ? I don't know if that is a possibility or not . Anyway, hope you get good news Nov. 1.
  • Trew
    Trew Member Posts: 931 Member
    hightide said:

    Cath's with a camera
    Thanks for the reply, do not like that the resistance is increasing. Was it ever discussed to have an indwelling catheter to stay in place and let the healing take place around the catheter ? I don't know if that is a possibility or not . Anyway, hope you get good news Nov. 1.

    Hightide- ah feedback! I
    Hightide- ah feedback! I have not heard of an indwelling cath before, but when I get to UofM I'll ask about it. I'm open to just about anything anymore.

    The good nes is I am still getting 2xs a day. Resistence is gradually increasing but its not so developed that it is keeping me out. It just takes longer and longer to get in.

    And the pain spot! what a contest of wills this is becoming!!
  • guards
    guards Member Posts: 72
    Trew said:

    Ileal Conduit- One of the possible side effects of PC
    If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:



    I have come to the place where i think this would be better than leaking.

    I am still hoping the AUS solution will work out.

    Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

    If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.

    our paths added to the board for general info
    Trew ,the stent or stint not sure of the spelling is to replace the catheter and permently open the spincter muscle, its a wire frame kinda that opens up and then the tissue grows into it holding it in place and then you are incontinent forever and the AUS better work cause there is no going back. I like you cannot imagine having to stay like this forever as I have been TOTALLY incontinant for 9 months now. I use at least 12 pads a day. The indwelling catheter is the foley, you've had in before. They stretched my spincther leaving a foley in for 1 week each after the problem doing the scope first a 16,18,20,22 for 1 week at a time. When you get to a 20/22 they are a bit uncomfortable! but not unbearable. Then let it heal for a week before surgery to insert the stent. I've had the stent for a couple of weeks now and I'm getting used to it. I just hope it doesn't move as that or infection are the only things the doctor told me could go wrong at this stage. I like this doctor a lot more than my first one. I go back and see him next week just for a how ya feeling visit. I think those that haven't been in our shoes can't imagine the discomfort and humility we go through daily! I know the problems your having with catheters. Are you using a straight cath or one with the funny tip? I found that rochester medical 16fr #63316 a straight clear(think its silacon?}worked best for me. Has a bullet like tip with some holes in it. none are great thats for sure. Hope things improve for you my friend.
  • guards
    guards Member Posts: 72
    Trew said:

    Ileal Conduit- One of the possible side effects of PC
    If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:



    I have come to the place where i think this would be better than leaking.

    I am still hoping the AUS solution will work out.

    Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

    If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.

    Whoa
    Well now that I have researched and seen the ileal conduit on the videos I sure am praying that I can get an AUS. That seems like pretty major stuff for life but like you said It may be better than the leak and at least allow some form of normal life. I have a nephew in law ? that has had one for years and I never even knew it till recently. Very active young man.
  • Trew
    Trew Member Posts: 931 Member
    guards said:

    our paths added to the board for general info
    Trew ,the stent or stint not sure of the spelling is to replace the catheter and permently open the spincter muscle, its a wire frame kinda that opens up and then the tissue grows into it holding it in place and then you are incontinent forever and the AUS better work cause there is no going back. I like you cannot imagine having to stay like this forever as I have been TOTALLY incontinant for 9 months now. I use at least 12 pads a day. The indwelling catheter is the foley, you've had in before. They stretched my spincther leaving a foley in for 1 week each after the problem doing the scope first a 16,18,20,22 for 1 week at a time. When you get to a 20/22 they are a bit uncomfortable! but not unbearable. Then let it heal for a week before surgery to insert the stent. I've had the stent for a couple of weeks now and I'm getting used to it. I just hope it doesn't move as that or infection are the only things the doctor told me could go wrong at this stage. I like this doctor a lot more than my first one. I go back and see him next week just for a how ya feeling visit. I think those that haven't been in our shoes can't imagine the discomfort and humility we go through daily! I know the problems your having with catheters. Are you using a straight cath or one with the funny tip? I found that rochester medical 16fr #63316 a straight clear(think its silacon?}worked best for me. Has a bullet like tip with some holes in it. none are great thats for sure. Hope things improve for you my friend.

    Talking Caths here...
    I'm using an 18 fr, clear with the blue guide line down the length, with a hard tip with a slip bend upward at the business end of it.

    guards, how much blood did you get from your cath procedures? I get some blood in the urine often after the cath is done. There is an "ouch!" point that brings the whle cath procedure to a stop for a minute or two, but with very slow gradual pressure I am finally able to slip past that point and into the bladder. But I can sense the resistence is gradually increasing. Did you get that same kind of resistence and if so, did if clear up or get worse on you?

    I can hardly wait for this part of my life to be over. 2Xs a day is getting way past the routine for me.
  • guards
    guards Member Posts: 72
    Trew said:

    Talking Caths here...
    I'm using an 18 fr, clear with the blue guide line down the length, with a hard tip with a slip bend upward at the business end of it.

    guards, how much blood did you get from your cath procedures? I get some blood in the urine often after the cath is done. There is an "ouch!" point that brings the whle cath procedure to a stop for a minute or two, but with very slow gradual pressure I am finally able to slip past that point and into the bladder. But I can sense the resistence is gradually increasing. Did you get that same kind of resistence and if so, did if clear up or get worse on you?

    I can hardly wait for this part of my life to be over. 2Xs a day is getting way past the routine for me.

    caths
    Trew,mine was straight, no bend at all they just seemed to work better with out that little bend. I used a LOT of the lub and kind of spiraled the cath in. Yes I found that pressure place where I had to push a bit harder. At this time I was going into complete urine shutdown and 100 percent retention so I was cathing 2-5 times a day to relieve the pressure. Yes I had bleeding regulary probably 70 percent of the time as I withdrew the cath or when I passed the urine. What happened to me next was I quit shutting down and went totally incontinent, no idea why and my Doc didn't either just gave me a marine salute and said for about the 3rd time in a year "guess we have to wait and see what happens" AGAIN and did not have me continue cath's. After about 6 months my GP who has been my Doc for about 18 years told me it was time to see a different Doc and sent me to the one I am seeing now. I had not had to cath for over 9 months when he tried to go in with a scope--- no anesthesia --- and it would not go ---period. Now we got some pain coming on this one as it was in his office and nothing but the lidocane? to help. I knew he had to get the cath in because if I shut down again I was back in the hosp. So after about 40 minutes of trying the nurse got my attention about something and he literaly used a stiffened unit (think he stuck a knitting needle in the cath LOL) and hit it firmly with his palm --- got in and got my attention!!! He grabbed me for fear it would pop out so i would be still and not pull it out. Set the first foley catheter to stretch the spincter. Went in with the scope four weeks later and found scaring etc. from the radiation and the turp and we discussed my options. A week later he had me in surgery and inserted the stent. The first day I saw him he had commented the worst thing to do on someone with bracky is a turp. Hope spelling don't count I'm a terrible typist and a worse speller.
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Trew said:

    Ileal Conduit- One of the possible side effects of PC
    If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:



    I have come to the place where i think this would be better than leaking.

    I am still hoping the AUS solution will work out.

    Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

    If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.

    Excuse the intrusion
    Trew, I have followed your ordeal and my heart truly goes out to you. You are a man of endurance. I can't say I know how you feel because I have not been there, but I do have a dear friend (female) who has an ileal ostomy. She suffered for many years with a bladder disease called interstitial cystitis. Finally she had the bladder removed and now wears the bag. I must tell you she is happy to not have the pain she had before. It has been over 20 years now and she has developed some other problems. But this has given her a much better life. I am looking forward to hearing from you that the doctors have found a way for you to live without this pain of self-cath. I know this is a guy thing but pain is pain. And I just wanted to let you know she has never been sorry she had this done.
  • Trew
    Trew Member Posts: 931 Member

    Excuse the intrusion
    Trew, I have followed your ordeal and my heart truly goes out to you. You are a man of endurance. I can't say I know how you feel because I have not been there, but I do have a dear friend (female) who has an ileal ostomy. She suffered for many years with a bladder disease called interstitial cystitis. Finally she had the bladder removed and now wears the bag. I must tell you she is happy to not have the pain she had before. It has been over 20 years now and she has developed some other problems. But this has given her a much better life. I am looking forward to hearing from you that the doctors have found a way for you to live without this pain of self-cath. I know this is a guy thing but pain is pain. And I just wanted to let you know she has never been sorry she had this done.

    Great Support- I love you guys!!
    HillBilly, just the kind of info I am interested in. Thanks for your interest. And Guards- you are a big help, too. I certainly have no idea how this is all going to turn out, but I am not surprised by any of it. I need to find out if one can be out backpacking for 8- 10 days straight with an ileal conduit in. If so, I will start relaxing a bit. I am always hopeing for the best outcome- I have all along the way. I'm sure I'll start getting a few breaks soon. I do not want to be the Detorit Lions of prostate cancer. Try thinking of that one for awhile! LOL!
  • Trew
    Trew Member Posts: 931 Member
    guards said:

    Whoa
    Well now that I have researched and seen the ileal conduit on the videos I sure am praying that I can get an AUS. That seems like pretty major stuff for life but like you said It may be better than the leak and at least allow some form of normal life. I have a nephew in law ? that has had one for years and I never even knew it till recently. Very active young man.

    I am praying for the same
    I am praying for the same end result- a good old fashioned AUS like all the other guys on the block have!!

    I want to say a word about my cath. Mine is actually tipped with a sand burr, and has barbed wire and broken glass imbedded up and down the length of the cath to distract from the sand burr. But fortunately, it only hurts while I"m inside. I keep telling myself, my wife had 3 babies about a 1000xs bigger than this cath-ITS GOING IN!! And then I get my new AUS to play with. Life is so simple at times. My I get the AUS for Xmas- that would be nice. when people start showing their gifts around......

    Well, I've written enough. Reader, you can finish this story anyway you want.

    Good nite. PS. I bet my dreams, guards dreams, are a bit different than the dreams the rest of you have. LOL I have my Life is Good T-shirt on. I always wear it after the night cath and sleep in it.
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Trew said:

    Great Support- I love you guys!!
    HillBilly, just the kind of info I am interested in. Thanks for your interest. And Guards- you are a big help, too. I certainly have no idea how this is all going to turn out, but I am not surprised by any of it. I need to find out if one can be out backpacking for 8- 10 days straight with an ileal conduit in. If so, I will start relaxing a bit. I am always hopeing for the best outcome- I have all along the way. I'm sure I'll start getting a few breaks soon. I do not want to be the Detorit Lions of prostate cancer. Try thinking of that one for awhile! LOL!

    Football and cancer?
    I thought about that last comment for about 30 seconds and then asked my husband "do you know who the Detroit Lions are". A football team!! So that is all the thinking I am going to do about that. But I do want to tell you that my friend who had her bladder removed has a very active life. It has been over 20 years and she has had some other problems. A couple of stints in her heart a few years ago. Before that she was walking 2 miles or more a day. She is still quite active. So I am thinking YES, you could go backpacking for 8 - 10 days. Of course there are certain supplies you would have to pack along with you!! Nobody would ever guess she has had this thing for 20 years unless she tells them.
  • Trew
    Trew Member Posts: 931 Member

    Football and cancer?
    I thought about that last comment for about 30 seconds and then asked my husband "do you know who the Detroit Lions are". A football team!! So that is all the thinking I am going to do about that. But I do want to tell you that my friend who had her bladder removed has a very active life. It has been over 20 years and she has had some other problems. A couple of stints in her heart a few years ago. Before that she was walking 2 miles or more a day. She is still quite active. So I am thinking YES, you could go backpacking for 8 - 10 days. Of course there are certain supplies you would have to pack along with you!! Nobody would ever guess she has had this thing for 20 years unless she tells them.

    The Detroit Lions
    Yes, they are a football team of sorts. sunday's loss at Green Bay was their 24th road loss in a row. And they don't do much better at home. No matter what the Lions are to do to win, they come up 1 score short, usually, in the end. With the Lions it sometimes even looks hopeful in th emiddle of the game, but in the end, they lose. they alwats lose.

    So now you know.
  • Trew
    Trew Member Posts: 931 Member
    Trew said:

    I am praying for the same
    I am praying for the same end result- a good old fashioned AUS like all the other guys on the block have!!

    I want to say a word about my cath. Mine is actually tipped with a sand burr, and has barbed wire and broken glass imbedded up and down the length of the cath to distract from the sand burr. But fortunately, it only hurts while I"m inside. I keep telling myself, my wife had 3 babies about a 1000xs bigger than this cath-ITS GOING IN!! And then I get my new AUS to play with. Life is so simple at times. My I get the AUS for Xmas- that would be nice. when people start showing their gifts around......

    Well, I've written enough. Reader, you can finish this story anyway you want.

    Good nite. PS. I bet my dreams, guards dreams, are a bit different than the dreams the rest of you have. LOL I have my Life is Good T-shirt on. I always wear it after the night cath and sleep in it.

    slight Correction needed
    Rereading my post above I may have exaggerated the sand burr, barbed wire and glass just a bit. I don't want anyone to misunderatand my running discriptions.....

    Also, I had a good talk with the U of MI accounts depart about my bill with them. Very nice department- set up a payment plan and I was told not to worry about future treatments. So life, as I know it, goes on.

    I filed the sand burr down this morning and the cath procedure went pretty well. I tell you, those who have never tired this just don't know what they are missing. But without a nice seciton of scar tissue you just wouldn't get the same impact, anyway, so yo might as well just forget it. for all you guys who had your prostates out, and are back to full urinary control and sex- you just don't know what you have missed out on. Better luck next time around.
  • marc1957
    marc1957 Member Posts: 79
    Trew said:

    The Detroit Lions
    Yes, they are a football team of sorts. sunday's loss at Green Bay was their 24th road loss in a row. And they don't do much better at home. No matter what the Lions are to do to win, they come up 1 score short, usually, in the end. With the Lions it sometimes even looks hopeful in th emiddle of the game, but in the end, they lose. they alwats lose.

    So now you know.

    Lions....
    Trew

    WHat do you call a Detroit Lion with a superbowl ring ?

    Yep, A Thief ! :-)

    Hang in there bud, you are an inspiration to all of us Michiganders !

    -marc
  • Trew
    Trew Member Posts: 931 Member
    marc1957 said:

    Lions....
    Trew

    WHat do you call a Detroit Lion with a superbowl ring ?

    Yep, A Thief ! :-)

    Hang in there bud, you are an inspiration to all of us Michiganders !

    -marc

    Lions!
    Marc- that was funny- and one I never heard before. However, i just asked my wife the question and she responded without hesitation: "A thief." I asked her if she had heard that line before and she said, "No, but how else could a Lion's player get one?" And sh eis hardly a sports fans at all.

    Like I told someone who is a Vikings' fan, Lions' fans are never disappointed- but from time to time they are mildly surprised. We have never been surprised by a road game for years now.

    Now, why did I bring up the Detroit Lions for anyway, and what does it have to do with my problems?
  • guards
    guards Member Posts: 72
    Trew said:

    Lions!
    Marc- that was funny- and one I never heard before. However, i just asked my wife the question and she responded without hesitation: "A thief." I asked her if she had heard that line before and she said, "No, but how else could a Lion's player get one?" And sh eis hardly a sports fans at all.

    Like I told someone who is a Vikings' fan, Lions' fans are never disappointed- but from time to time they are mildly surprised. We have never been surprised by a road game for years now.

    Now, why did I bring up the Detroit Lions for anyway, and what does it have to do with my problems?

    Trade
    Wanna trade your Lions For my Cubbies!!!!!

    Don't think I ever told you I used to live in Fenton and then moved to Saline before we moved back here to the Chicago area.

    I'm having a great day only 9 pads so far, the bad part is I sometimes get my underwear damp and they have to go in the laundry then the wife makes me do the laundry! Glad I bought 20 pair. LOL
  • Trew
    Trew Member Posts: 931 Member
    Pad Diary Update
    Wed nite.

    Cath done at 8: 30 pm.

    Passed the biggest clot to date at 10: 15. I am hoping that clot would have been scar tissue but it is now in the toilet. Does it work that way? Quite a bit of resistence tonight but I did get in.

    Wife says my bladder doens't hold any urine any more so it isprobably shrinking in size. Well, everything else in that area is, so why not the bladder, too? LOL!

    I know I get into the bladder every time by the flow in the tube, but there is never enough to push the urine out the end. Just a few cc's at the most. Always.
  • Trew
    Trew Member Posts: 931 Member
    guards said:

    Trade
    Wanna trade your Lions For my Cubbies!!!!!

    Don't think I ever told you I used to live in Fenton and then moved to Saline before we moved back here to the Chicago area.

    I'm having a great day only 9 pads so far, the bad part is I sometimes get my underwear damp and they have to go in the laundry then the wife makes me do the laundry! Glad I bought 20 pair. LOL

    Pads Calore!
    guards, you and I could support the industry.

    I purchsed a postal scale so I could keep track of pad weight/oz. Here is my daily total from the real pad diary as of 9:45 p.m. ET:

    8:10a.m. -- 2.1 oz
    10:30 -- 8.1 oz- vigorous 3-4 mile walk
    11:50 -- 2.7
    1:35p.m. -- 2.7 oz
    2:55 -- 2.0 oz
    4:17 -- 1.7
    6:30 -- 2.7
    9:45 -- 3.5 oz
    total- 26.7oz

    Note- so far today, also 9 pads. Very typical day. I often have one really wet pad like the one above when Iam out exercising, but sometimes it just happens when I am out. Just not the kind of conditon that lends itself to a storng social self-confidence.

    Some days I am almost overwhelmed. Must be something like how the Detorit Lions feel every Sunday night. I would trade places with any one of them.