The Pad Diaries

JR1949

Trew said:

Progress Notes, Tuesday, Aug 31, 2010
I am greatly encouraged by the progress of two good forum buddies. They give me hope.

Tomorrow, Sept. 1 I return to U of MI to get my cath pulled. I have been warned: "You will run a lot when the cath comes out." that is the nature of the beast I am dealing with.

Looking at my U of MI papers I an scheduled for my next appointment with Dr Latini on Nov. 1 to have another cystoscopy. I am losing count of the number I have had this year already. The last one was done in the OR on Friday along with extensive cutting. I think this will be my 2nd or 3rd in the examine room in Nov.

IF no scar tissue reforms I can get scheduled for an AUS.

On top of all this I have a friend in Lansing who has just gone on hospice care. His ca (not prostate) has invaded his bones and other body tissues. He is sinking fast now.

Very sobering, all of this.

Skid Row and Hightide- thanks for hanging with this forum and sharing. I can hardly wait for my turn.

News
Trew, I am glad hear about your good news. Sounds like you are on your way toward healing.
I hope everything works out for you. I feel your pain, but glad to hear that things are looking up for you. Hope you too can join Skid Row and Hightide in rejoicing soon.

So sorry to hear about your friend in Lansing.

JR

muttsrule

Trew said:

Progress Notes, Tuesday, Aug 31, 2010
I am greatly encouraged by the progress of two good forum buddies. They give me hope.

Tomorrow, Sept. 1 I return to U of MI to get my cath pulled. I have been warned: "You will run a lot when the cath comes out." that is the nature of the beast I am dealing with.

Looking at my U of MI papers I an scheduled for my next appointment with Dr Latini on Nov. 1 to have another cystoscopy. I am losing count of the number I have had this year already. The last one was done in the OR on Friday along with extensive cutting. I think this will be my 2nd or 3rd in the examine room in Nov.

IF no scar tissue reforms I can get scheduled for an AUS.

On top of all this I have a friend in Lansing who has just gone on hospice care. His ca (not prostate) has invaded his bones and other body tissues. He is sinking fast now.

Very sobering, all of this.

Skid Row and Hightide- thanks for hanging with this forum and sharing. I can hardly wait for my turn.

Progress Notes
It's so good to check in and find progress, improving moods, high hopes and a funny, oh-so-true poem. As I sign off I think this is the first time I've left this page without feeling depressed and inspired and blessed all at the same time. Today I move on feeling inspired, blessed, and full of hope for all of us. Trew, may your friend sink swiftly and without pain. John in Seattle

ob66

Skid Row Tom said:

Hospitals
I've been in the hospital so damn much because of PC and its related problems, the nurses refer to me as a "frequent flyer".

Plunking my magic twanger Froggie
Activated at 10:00am today. Had somewhat of a difficult time squeezing hard enough initially. Doctor had me do it a couple of times to verify my performance. Came home and filled up with liquid. It works. Diapers and pads gone. Am using a Tena slender, ultra thin pad in underpants. So far, after 3 hours, NO dripping.

One thing that Skid Row Tom mentioned, and I will continue to evaluate is the positioning of the activator. Mine was placed in right testicle because I am right handed. The way you hold it is on the tubing right above the activator with your left hand and then activate with your right index finger/thumb. It might have been easier were it in my left testicle, but I will evaluate and report if there is any interest. Trew, I am thinking of you today, and hope it is available for you soon. So far, so good.

Trew

ob66 said:

Plunking my magic twanger Froggie
Activated at 10:00am today. Had somewhat of a difficult time squeezing hard enough initially. Doctor had me do it a couple of times to verify my performance. Came home and filled up with liquid. It works. Diapers and pads gone. Am using a Tena slender, ultra thin pad in underpants. So far, after 3 hours, NO dripping.

One thing that Skid Row Tom mentioned, and I will continue to evaluate is the positioning of the activator. Mine was placed in right testicle because I am right handed. The way you hold it is on the tubing right above the activator with your left hand and then activate with your right index finger/thumb. It might have been easier were it in my left testicle, but I will evaluate and report if there is any interest. Trew, I am thinking of you today, and hope it is available for you soon. So far, so good.

Good description of how to
Good description of how to opperate the device, Ob.

My next appointment in Ann Arbor U of MI is Nov. 1. Dr Latini wants to see how much scar tissue builds back up. So no word an when I can get mine installed.

Dry sounds so very nice. Most summers I go out to the public beach or use a pool a few times, but not once this summer.

Skid Row Tom

ob66 said:

Plunking my magic twanger Froggie
Activated at 10:00am today. Had somewhat of a difficult time squeezing hard enough initially. Doctor had me do it a couple of times to verify my performance. Came home and filled up with liquid. It works. Diapers and pads gone. Am using a Tena slender, ultra thin pad in underpants. So far, after 3 hours, NO dripping.

One thing that Skid Row Tom mentioned, and I will continue to evaluate is the positioning of the activator. Mine was placed in right testicle because I am right handed. The way you hold it is on the tubing right above the activator with your left hand and then activate with your right index finger/thumb. It might have been easier were it in my left testicle, but I will evaluate and report if there is any interest. Trew, I am thinking of you today, and hope it is available for you soon. So far, so good.

I am also right handed.
I am also right handed. Mine also is on my right side (right testicle). However, I grab the "activator" with my right hand and squeeze the magic twanger (bulb) with my left thumb and middle finger. It's my understanding that the doctor is supposed to ask you prior to surgery which side you prefer, but my doctor never asked. Again, I think it would be EXTREMELY beneficial if doctors had a model of an AUS for you to look at and fondle before implantation. It's hard to operate it if you don't know what you're feeling for. I still have a few drips during the day, but a Teena thin pad takes care of it. Prior to the AUS, I had no control and sympathize with Trew about a catheter being a blessing. I had to resolve a bladder cancer issue before they resolved the incontinence, and the catheter was a welcome relief (believe it or not) from heavy, urine soaked pads, "diaper" rash, and the smell. My urologist is a bit disappointed that I have any leaking at all. My theory is that he may not have put enough fluid in the apparatus. If you read about the installation of an AUS, it's a real crap shoot. The surgeon has to take his best shot at the length of tubing, amount of fluid (pressure), and cuff size. Any miscalculation can lead to further incontinence or tissue erosion. I'd rather have him error on the side of a drip or two rather than running the risk of tissue erosion.

Trew

September 3, 2010 Vocabulary Update
I was just thinking how much my vocabulary and knowledge has increased.

Once upon a time I was vaguely aware that some people had to practice self catheterization. It surely would never happen to me.

I know know there are a variety of cath tubes and sizes.

I currently am using an 18 fr (for french) 2x a day. I have tried 4 or 5 different sizes and shapes of caths. Tips vary.

I know more about an urethra than I ever wanted to know.

In other areas related to prostate cancer and side effects of radiaiton I have added other words to my vocabulary. And I thought algrabra made me sweat!! This is some of the most serious learning I have ever done.

The good news is I only have 57 1/2 days to go on the self-cath Rx and then I see the doctor who will do another scope to see if the scar tissue is checked. If not, another trip to OR.

I am getting so much for my buck out of this expereince.

hightide

ob66 said:

Plunking my magic twanger Froggie
Activated at 10:00am today. Had somewhat of a difficult time squeezing hard enough initially. Doctor had me do it a couple of times to verify my performance. Came home and filled up with liquid. It works. Diapers and pads gone. Am using a Tena slender, ultra thin pad in underpants. So far, after 3 hours, NO dripping.

One thing that Skid Row Tom mentioned, and I will continue to evaluate is the positioning of the activator. Mine was placed in right testicle because I am right handed. The way you hold it is on the tubing right above the activator with your left hand and then activate with your right index finger/thumb. It might have been easier were it in my left testicle, but I will evaluate and report if there is any interest. Trew, I am thinking of you today, and hope it is available for you soon. So far, so good.

Plunking the magic twanger
ob66 , Glad to hear you got your AUS activated!!! Sorry I am so late in responding to you about what Medi-Alert to use. I am still trying to figure that out myself. I am carring the card that was in the packet that the urol. gave to my wife while I was in the recovery room after mine was put in July 23rd. On one side is info about me, name,address,& ect. on the other side is a picture and instructions about the AUS. I am thinking about ordering a dog tag from Medi-Alert. The biggest problem I had was getting activated. Two urols tried to turn it on seven weeks post-op and could not get it to work. Waited two weeks and one of them and another urol. tried at nine weeks post-op with no luck!!!The new one said if we had him asleep I think we can get it to work. I spoke up and said I am being put to sleep next Mon. morning at 8:30 for a routine five year colonoscopy. He said that is my day off but I will come in to the G.E. lab and give it a try. It worked the first time he tried,THANK GOD !!!!! Hope everything is going well for you, mine could not be better.
Regards, hightide

ob66

hightide said:

Plunking the magic twanger
ob66 , Glad to hear you got your AUS activated!!! Sorry I am so late in responding to you about what Medi-Alert to use. I am still trying to figure that out myself. I am carring the card that was in the packet that the urol. gave to my wife while I was in the recovery room after mine was put in July 23rd. On one side is info about me, name,address,& ect. on the other side is a picture and instructions about the AUS. I am thinking about ordering a dog tag from Medi-Alert. The biggest problem I had was getting activated. Two urols tried to turn it on seven weeks post-op and could not get it to work. Waited two weeks and one of them and another urol. tried at nine weeks post-op with no luck!!!The new one said if we had him asleep I think we can get it to work. I spoke up and said I am being put to sleep next Mon. morning at 8:30 for a routine five year colonoscopy. He said that is my day off but I will come in to the G.E. lab and give it a try. It worked the first time he tried,THANK GOD !!!!! Hope everything is going well for you, mine could not be better.
Regards, hightide

Froggie
Thanks for the response. The more time I take, the more I decide I want engraved. I would prefer the dog tags too, but am afraid they won't be seen as well as a bracelet. Skid Row was real helpful. I think I will put
"Artificial Urninary Sphincter"
"Call Urologist"
"ICE (in case of emergency) XXX-XXX-XXXX"
"Blood Type B+"

Glad yours is working well. Four days out and it is heaven. Just like Skid Row said, it takes some time to learn to manipulate, but oh how heavenly. Thanks, Bob

Trew

Process for getting cleared for an AUS?
I was wondering if you guys with the AUS had to pass certain criteria before getting your AUS? Did any of you have to weigh your pads to see how many oz they contained, that kind of stuff?

Skid Row Tom

Trew said:

Process for getting cleared for an AUS?
I was wondering if you guys with the AUS had to pass certain criteria before getting your AUS? Did any of you have to weigh your pads to see how many oz they contained, that kind of stuff?

AUS process
The only criteria was that I could withstand surgery (kind of like pc) and that I had the physical dexterity to manipulate the pump. The urologist had me go through the urodynamics test, and I kept a diary of pad usage, but otherwise, it was quite obvious I was incontinent. There was no "weighing" of pads or anything else. There was no hassle with the insurance company either.

hightide

Skid Row Tom said:

AUS process
The only criteria was that I could withstand surgery (kind of like pc) and that I had the physical dexterity to manipulate the pump. The urologist had me go through the urodynamics test, and I kept a diary of pad usage, but otherwise, it was quite obvious I was incontinent. There was no "weighing" of pads or anything else. There was no hassle with the insurance company either.

AUS process
My case was very much like what Tom said. My doc said if you are loosing more than 7 ounces a day you need the AUS. He did a cysto. to make sure my urethra was healthy enough to put the cuff around and after that we were ready to go. I did not have to weigh any pads or anything,

Trew

hightide said:

AUS process
My case was very much like what Tom said. My doc said if you are loosing more than 7 ounces a day you need the AUS. He did a cysto. to make sure my urethra was healthy enough to put the cuff around and after that we were ready to go. I did not have to weigh any pads or anything,

Healthy Urethra
That is the sticky point right now. Can my urethra heal enough to allow the cuff.

I am a bit anxious about all of this. I am over the 7 oz- sometimes close to or over 16 oz a day. I have been measuring and keeping a real pad diary- every pad is weighed just in case I get to my Nov 1 appointment and the urethra is set to go.

I am doing the self cath 2x a day- drawing blood for the last times, but I am determined.

I was sining this morning at breakft time, "All I want for Xmas is a new AUS, a new AUS, a new AUS..." Of course there is THAT other song, too: "I ain't gettin' nothin' for Xmas because I ain't been nothin' but bad..."

ob66

Trew said:

Process for getting cleared for an AUS?
I was wondering if you guys with the AUS had to pass certain criteria before getting your AUS? Did any of you have to weigh your pads to see how many oz they contained, that kind of stuff?

Never felt I was
Never felt I was passing any criteria, but come to think of it, my urologist over the course of 6 months had me with a very good physical therapist who knocked me down from 6-8 pads a day to 3-4 pads a day...All was going well when my ultrasensitive PSA (9 month post surgical) came back up at 0.07 from the three previous 0.05 tests...At that point it was decided that I needed radiation to complement the surgery, but before radiation that the AUS should be placed, so that was done in May 2010....I guess that was my criteria...But please note Trew, the intent here was to have the AUS prior to RT...I am currently counseling a friend who has had RT and radical prostatectomy in the past... His urologist won't touch him, but referred him the UCSF and U$C Medical Center specialists....I will let you know how it goes...I do understand that post RT, surgery is difficult in "mushy" tissues...

Kongo

FYI
Trew, so this posted on urotoday.com and thought you might find it informative. Good luck to you.

Efficacy of the InVance male sling in treating stress urinary incontinence: A three-year experience from a single centre - Abstract


Friday, 10 September 2010
Department of Urology, Medical School, University of Michigan, Ann Arbor, Mich., USA.

The aim of this study was to evaluate the efficacy of the InVance male sling in treating stress urinary incontinence.

We retrospectively reviewed operative logs from a single surgeon of 43 patients treated over a 3-year period (Feb. 2004 to Nov. 2006) for stress incontinence by implantation of a male bulbourethral bone-anchoring sling (InVance). The mean follow-up time was 24.2 months (range 4-38). Radical prostatectomy was the most common cause of incontinence in this group (33/ 43 cases; 76.7%). Efficacy was evaluated objectively in terms of the number of pads used per day, while subjective patient satisfaction was also recorded. We also investigated a possible correlation between preoperative parameters and outcome.

Twenty-two patients (51.2%) were cured (totally dry: 30.2%; the remainder: 1 pad per day), while 8 (18.6%) patients improved but still required two pads per day. Overall, 30 of 43 patients (69.6%) were satisfied with the outcome of the operation. Postoperative infection was the most common complication (11.6%). The severity of preoperative incontinence correlated with the outcome of the operation, with mild incontinence giving better results.

The bone-anchored male sling is an effective and minimally invasive treatment for mild-to-moderate male urinary incontinence.

Written by:
Athanasopoulos A, Konstantinopoulos A, McGuire E.
Reference: Urol Int. 2010 Jul 14. Epub ahead of print.
doi: 10.1159/000314918

PubMed Abstract
PMID: 20628235

Skid Row Tom

Kongo said:

FYI
Trew, so this posted on urotoday.com and thought you might find it informative. Good luck to you.

Efficacy of the InVance male sling in treating stress urinary incontinence: A three-year experience from a single centre - Abstract


Friday, 10 September 2010
Department of Urology, Medical School, University of Michigan, Ann Arbor, Mich., USA.

The aim of this study was to evaluate the efficacy of the InVance male sling in treating stress urinary incontinence.

We retrospectively reviewed operative logs from a single surgeon of 43 patients treated over a 3-year period (Feb. 2004 to Nov. 2006) for stress incontinence by implantation of a male bulbourethral bone-anchoring sling (InVance). The mean follow-up time was 24.2 months (range 4-38). Radical prostatectomy was the most common cause of incontinence in this group (33/ 43 cases; 76.7%). Efficacy was evaluated objectively in terms of the number of pads used per day, while subjective patient satisfaction was also recorded. We also investigated a possible correlation between preoperative parameters and outcome.

Twenty-two patients (51.2%) were cured (totally dry: 30.2%; the remainder: 1 pad per day), while 8 (18.6%) patients improved but still required two pads per day. Overall, 30 of 43 patients (69.6%) were satisfied with the outcome of the operation. Postoperative infection was the most common complication (11.6%). The severity of preoperative incontinence correlated with the outcome of the operation, with mild incontinence giving better results.

The bone-anchored male sling is an effective and minimally invasive treatment for mild-to-moderate male urinary incontinence.

Written by:
Athanasopoulos A, Konstantinopoulos A, McGuire E.
Reference: Urol Int. 2010 Jul 14. Epub ahead of print.
doi: 10.1159/000314918

PubMed Abstract
PMID: 20628235

Sling efficacy
I think the key terms here are "mild-to-moderate male urinary incontinence". When you have no bladder control, the efficacy of the sling is questionable. You will also find that an AUS is the last (and only) treatment available if and when the sling fails. My local urologist and my surgeon at Johns Hopkins both referred to the AUS as the "gold standard" of incontinence treatments. I'm glad I didn't mess around and went with the AUS.

ob66

Skid Row Tom said:

Sling efficacy
I think the key terms here are "mild-to-moderate male urinary incontinence". When you have no bladder control, the efficacy of the sling is questionable. You will also find that an AUS is the last (and only) treatment available if and when the sling fails. My local urologist and my surgeon at Johns Hopkins both referred to the AUS as the "gold standard" of incontinence treatments. I'm glad I didn't mess around and went with the AUS.

Second that Tom
I know when the matter came up I started talking to my urologist about the AdVance vs. the InVance sling for I had read numerous reasons not to do the latter but consider the former. Well, he nixed that immediately and went right to the AUS. At the time I know I thought having to activate something for the rest of my life is not too neat. Well, now after 10+ days and 10, or fewer, Tena Ultrathin pads used with little to no dripping, I would say that the AUS is the Gold Standard. Would do it over in a blink!!! Life is sooo much better. For those with incontinence, not only the pad count is reduced to zero, but you don't have to scope out bathrooms on every trip you make outside your own home; you can walk around nude in your bathroom after showering if you so desire; you can play golf without pads or diapers for the potties range in location; you can go workout without worrying about leakage. To me, as Skid Row Tom suggested, the AUS is the Gold Standard.

Trew

ob66 said:

Second that Tom
I know when the matter came up I started talking to my urologist about the AdVance vs. the InVance sling for I had read numerous reasons not to do the latter but consider the former. Well, he nixed that immediately and went right to the AUS. At the time I know I thought having to activate something for the rest of my life is not too neat. Well, now after 10+ days and 10, or fewer, Tena Ultrathin pads used with little to no dripping, I would say that the AUS is the Gold Standard. Would do it over in a blink!!! Life is sooo much better. For those with incontinence, not only the pad count is reduced to zero, but you don't have to scope out bathrooms on every trip you make outside your own home; you can walk around nude in your bathroom after showering if you so desire; you can play golf without pads or diapers for the potties range in location; you can go workout without worrying about leakage. To me, as Skid Row Tom suggested, the AUS is the Gold Standard.

Sling Has Been Ruled Out
At my first U of MI appointment Dr Latini mentioned the sling but then ruled it out herself because on the amount of flow. Right now my daily drip-age? is between 12- 17 or between 6- 11 pads a day.

Since I am going to the U of MI myself the study cited a few posts above was of intrest to me and I wonder if that one doctor was Dr Latini. She talked as one who had some confidence in them and is a prominent urologist at U of MI.

I am just hoping I can keep my urethra open. I have had a quite a bit of blood with the last 4 experinces but the one this morning was a bit less than the last 3. and no clotts in this mornings cath. I don't know how many others have done the self cath. what a nice break from the daily routine. I like doing it in the shower for lots of reasons, but again, for those of you who have missed all of this, I really feel sorry for you.

hightide

Trew said:

Sling Has Been Ruled Out
At my first U of MI appointment Dr Latini mentioned the sling but then ruled it out herself because on the amount of flow. Right now my daily drip-age? is between 12- 17 or between 6- 11 pads a day.

Since I am going to the U of MI myself the study cited a few posts above was of intrest to me and I wonder if that one doctor was Dr Latini. She talked as one who had some confidence in them and is a prominent urologist at U of MI.

I am just hoping I can keep my urethra open. I have had a quite a bit of blood with the last 4 experinces but the one this morning was a bit less than the last 3. and no clotts in this mornings cath. I don't know how many others have done the self cath. what a nice break from the daily routine. I like doing it in the shower for lots of reasons, but again, for those of you who have missed all of this, I really feel sorry for you.

Ruling out the sling....
Trew, here is my two cents for what it is worth. When I went for my talking appointment I had read everything I could find about incontinence. I was considering the sling and it was the first thing my doctor and I discussed. (I had the robot surgery and about a year and three months later my PSA started to rise so I had radiation therapy as follow up.)My doc informed me at this point that he is not a fan of the sling in post radiation patients.He said it makes the pipe stiffer and when the sling straitens out this stiffer pipe, things seem to get worse. At this point he recommended that we talk about the AUS. He has had the best results in patients like me with the AUS and has done a lot of them. My big concern, based on what I had read, was the chance of erosion where the cuff is around the pipe. He said it can occur but not any higher chance than with the sling. At this point he said lets done a cysto. right now and see what your plumbing looks like and find a good place to put the cuff. After the cysto. ,(had I known it would be done right then, I would have kept my mouth shut!)he said, I see no reason why you should not do fine. At that point the game was on and I love my AUS!!!!!
Regards, hightide

Skid Row Tom

Trew said:

Sling Has Been Ruled Out
At my first U of MI appointment Dr Latini mentioned the sling but then ruled it out herself because on the amount of flow. Right now my daily drip-age? is between 12- 17 or between 6- 11 pads a day.

Since I am going to the U of MI myself the study cited a few posts above was of intrest to me and I wonder if that one doctor was Dr Latini. She talked as one who had some confidence in them and is a prominent urologist at U of MI.

I am just hoping I can keep my urethra open. I have had a quite a bit of blood with the last 4 experinces but the one this morning was a bit less than the last 3. and no clotts in this mornings cath. I don't know how many others have done the self cath. what a nice break from the daily routine. I like doing it in the shower for lots of reasons, but again, for those of you who have missed all of this, I really feel sorry for you.

Joys of self-cath
I've experienced the "joy" of self-cath. I may have told you earlier, when I first started, the caths they gave me at Johns Hopkins were the reusable type, had an end on it that looked like a BB, and for my mind, were hellish big (in diameter). I ordered disposable ones, one size smaller (14 FR), and ones that had a "pointed" end which made insertion much easier (or at least as easy as it gets). Regardless of where you perform the act, it's sure that you need some "quiet time". I'm glad that phase of my life is over.

Trew

Skid Row Tom said:

Joys of self-cath
I've experienced the "joy" of self-cath. I may have told you earlier, when I first started, the caths they gave me at Johns Hopkins were the reusable type, had an end on it that looked like a BB, and for my mind, were hellish big (in diameter). I ordered disposable ones, one size smaller (14 FR), and ones that had a "pointed" end which made insertion much easier (or at least as easy as it gets). Regardless of where you perform the act, it's sure that you need some "quiet time". I'm glad that phase of my life is over.

Its an 18 frenchy for me!
I'm using an 18 fr and I am determined to get that cath in every time IF that is what is needed to get on to an AUS. I use a new cath every other day. Today was day 13- or 26x. I haven't missed once. I have been drawing blood with every cath since last Wed evening- that is the last 11 times have been somewhat to real bloody. I think the tissue may be growing back and I am now fighting it off. I'll call my nurse advisor tomorrow and get her imput.

Tonight I am just overwhelmed with a desire to be normal again. Only 8 pads today, but the impact of those 8 pads is beyond comprehesion to the average person, I'm sure.

I cath to get over this and on to something better.