Incontenance Recovery Question

kreinholt

This question goes out to anyone who has beaten the incontenance. I am only 2 months since the catheter was removed so I don't necessarily have any expectations of beating the incontenance yet, however I am curious as to what to expect when I do gain control. I feel that my incontenance varies day by day. I do my kegals whenever I can, driving, sitting at work, etc. Some days I seem to be able to hold it until I can reach a bathroom and some days I don't seem to be able to hold it all. I guess my question is, when you do regain control, are you just able to hold it in until you get to a restroom or can you walk, run etc. without needing to worry about where the nearest restroom is. Do the PC muscles prevent you from any leaking without your awareness, while you are being active? Still keeping the faith.

lion1

Incontinence
kreinholt,

Look back at my previous posts on incontinence, it should give you some deep perspective--incontinent 3 yrs---taking further steps now----please read my posts.

lion1

Paraplu

Great Question
Hi there, a great question. As people answer this question it would also be good to know what kind of procedure they had done.

Mine: daVinci robotic surgery, the catheter was removed one month ago.
Yes, still wearing pads, yesterday was a good day: 1 pad during the day and 1 during the night.
However, I did mostly office work yesterday. When I walk it can be a pad a mile or so, I can tell you.

It seems gravity does its job, getting up frequently and walking a lot, does not help. Hard to kegel when you're walking up a hill. :-)

Theo

tpelle

lion1 said:

Incontinence
kreinholt,

Look back at my previous posts on incontinence, it should give you some deep perspective--incontinent 3 yrs---taking further steps now----please read my posts.

lion1

Lion1's further steps
Lion1, has your appointment date at Walter Reed been set? tpelle

ismetals

I,m lucky
I guess you could say that as far as incontenance goes I am one of the lucky ones. It's been 8 months or so since my robotic surgery. The first night on after the catheter was removed and every night since have been dry. The first month during the day was a battle at times. I never let up and would do as much strenuous activity as I could. It seems to have paid off. I now participate actively in any sport including firefighting as a voluteer with no problems. I still practice constant vigilance though because you can never let up. Red wine is the killer. Caution when using any alchohol or else.
Good luck and keep fighting.
ps. the other battle (ed) is yet to be won but I will win that one too. I hope

thegriz

Incont
Simple answer is: You should regain control without having to think about it, that is, you won't have to mentally "hold it in". You may then have an occassional small sudden leak, but mostly just irritating that you have done so, not an event stopper. I'm 1 1/2 years out from DaVinci.

lion1

tpelle said:

Lion1's further steps
Lion1, has your appointment date at Walter Reed been set? tpelle

Walter Reed Visit
tpelle,

The appt is 3 Jun 09----when I get back I'll tell you where we are going from here?????

Thanks for asking---how are you progressing?

Lion1

kreinholt

thegriz said:

Incont
Simple answer is: You should regain control without having to think about it, that is, you won't have to mentally "hold it in". You may then have an occassional small sudden leak, but mostly just irritating that you have done so, not an event stopper. I'm 1 1/2 years out from DaVinci.

Incontenence
Thanks ismetals and griz. With me at this point, some days are better than others, probably depending on my liquid intake. Some days I can hold large amounts until I reach a restroom and other days I don't seem to be able to hold anything. But again, I mentally have to think about holding it by flexing my PC muscles to do it. I know that it is still early in my recovery (2 1/2 months since catheter removed) however I look forward to the day that I will be dry. Although I haven't let it stop me from doing the things I used to do like Karate with my son, snowboarding and going to a baseball game, it does take some advance planning and at this point is a real annnoyance. Thanks for the insight.

tpelle

lion1 said:

Walter Reed Visit
tpelle,

The appt is 3 Jun 09----when I get back I'll tell you where we are going from here?????

Thanks for asking---how are you progressing?

Lion1

Good Luck With Your Appointment
Had open inguinal hernia surgery on May 11 (scar from prostatectomy prevented laparoscopic). I think that absent the catheter, the aftermath of the open prostatectomy six years ago was easier. Not attempting any Kegels yet -- not until the pain subsides. Hope you get lots of good info on AdVance. tpelle

lion1

tpelle said:

Good Luck With Your Appointment
Had open inguinal hernia surgery on May 11 (scar from prostatectomy prevented laparoscopic). I think that absent the catheter, the aftermath of the open prostatectomy six years ago was easier. Not attempting any Kegels yet -- not until the pain subsides. Hope you get lots of good info on AdVance. tpelle

Appointment very promising with Incontinence
tpelle'

Well saw the Doc at Walter Reed----very impressed! He was extremely thorough--did uro and cystcoptopy. Then he explained his plan--turns out it's really not my sphincter that's the problem. It's my bladder--it's contracting way to much---so he prescribed meds for me for 8wks---if any improvement-- I'll report it to him---then potentially--bovine injections and later on if need be Advance Sling, but this is all contingent on how my bladder reacts in the next few months. My wife and I talked to him extensively and I feel he's right on the mark. You know that feeling when you get it ----this is the right Doc for me. He did train under Webster and he performs the Advance and AUS. He shared with me the pro's and con's on each procedure, he didn't leave anything out.

And for anyone who reads this post, I will tell you that nothing is 100%. It just depends on the individual. I like this Doc because he is completely honest and doesn't give you false expectations. He told me exactly the number of folks and the adverse effects he sees. He also shared the positive success stories.

If you are retired military, I think Dr Jezior is who you should see--my opinion of course. By the way , he new Doctor Mc Cammons.


Finally, although I am fighting my own incontinence demon, it's nothing compared to the brave men and women who arrive and rehabiltate at Walter Reed everyday----the environment there puts life in complete perspective---God Bless our troops!

Lion1

tpelle

lion1 said:

Appointment very promising with Incontinence
tpelle'

Well saw the Doc at Walter Reed----very impressed! He was extremely thorough--did uro and cystcoptopy. Then he explained his plan--turns out it's really not my sphincter that's the problem. It's my bladder--it's contracting way to much---so he prescribed meds for me for 8wks---if any improvement-- I'll report it to him---then potentially--bovine injections and later on if need be Advance Sling, but this is all contingent on how my bladder reacts in the next few months. My wife and I talked to him extensively and I feel he's right on the mark. You know that feeling when you get it ----this is the right Doc for me. He did train under Webster and he performs the Advance and AUS. He shared with me the pro's and con's on each procedure, he didn't leave anything out.

And for anyone who reads this post, I will tell you that nothing is 100%. It just depends on the individual. I like this Doc because he is completely honest and doesn't give you false expectations. He told me exactly the number of folks and the adverse effects he sees. He also shared the positive success stories.

If you are retired military, I think Dr Jezior is who you should see--my opinion of course. By the way , he new Doctor Mc Cammons.


Finally, although I am fighting my own incontinence demon, it's nothing compared to the brave men and women who arrive and rehabiltate at Walter Reed everyday----the environment there puts life in complete perspective---God Bless our troops!

Lion1

Lion1: Many thanks for your feedback. Its good you are on a plan to solve this annoying incontinence. As you say it just depends on the individual. It would be great if you could see improvement before you reach the surgical stage. In my case, to "quiet the bladder" and "exercize the sphincter" my urologist prescribed Imipramine which I took for over a year. It was minimally effective, mostly from dehydrating the body. Later, I took a newly released drug, Cymbalta, for several months. In both of these cases the side effects were not worth the hardly noticeable improvement in urine control. Next we did a collagen injection. Complete waste of effort. Urologist/surgeon did only one injection More bulking could negatively impact later sling surgery option. That's where I am now. His next step in my plan is the AdVance or AMS 800. After this recent painful hernia surgery I'm not sure I want more cutting on my body.

Are you saying that Dr. Jezior's enthusiasm for AdVance is not at a level comparable to what we saw in the second Rountable and the McCammons webcast? Are you as enthusiastic about AdVance as you may have been before the Dr. Jezior visit? Are the AdVance negatives more numerous than we've heard?


Our incontinence problems certainly don't compare with issues faced by some of our military. Yet, if there's a reasonable solution to incontinence let's go for it. Spent four years at the AFROTC Command at Maxwell during Korean Conflict. Early out to attend the U of Ala, then back home to California. tpelle

lion1

tpelle said:

Lion1: Many thanks for your feedback. Its good you are on a plan to solve this annoying incontinence. As you say it just depends on the individual. It would be great if you could see improvement before you reach the surgical stage. In my case, to "quiet the bladder" and "exercize the sphincter" my urologist prescribed Imipramine which I took for over a year. It was minimally effective, mostly from dehydrating the body. Later, I took a newly released drug, Cymbalta, for several months. In both of these cases the side effects were not worth the hardly noticeable improvement in urine control. Next we did a collagen injection. Complete waste of effort. Urologist/surgeon did only one injection More bulking could negatively impact later sling surgery option. That's where I am now. His next step in my plan is the AdVance or AMS 800. After this recent painful hernia surgery I'm not sure I want more cutting on my body.

Are you saying that Dr. Jezior's enthusiasm for AdVance is not at a level comparable to what we saw in the second Rountable and the McCammons webcast? Are you as enthusiastic about AdVance as you may have been before the Dr. Jezior visit? Are the AdVance negatives more numerous than we've heard?


Our incontinence problems certainly don't compare with issues faced by some of our military. Yet, if there's a reasonable solution to incontinence let's go for it. Spent four years at the AFROTC Command at Maxwell during Korean Conflict. Early out to attend the U of Ala, then back home to California. tpelle

tpelle,

Excellent questions and I'll try to answer them all. Now that I have settled down from my trip, let me lend some more perspective. I know my enthusiasm yesterday must have sounded like I had a cure, but what it really did give me more hope. Hope, that as you stated may result in not having a surgical procedure.

I believe that what Doctor Jezior told me was that in my specific condition that the Advance sling could supplement and drastically improve my incontinence, even with the contracting bladder. After examining me, he stated I am a good candidate for the Advane Sling.
I am still enthused about the Sling,however now with knowing exactly what my body is doing, it's not like the sling will cure-all. The ditropin that he prescribed will be a test really to see if the contractions subside. My previous uroligist gave me Detrol La--didn't work-----Vesicare---didn't work-----so I have been down the long road too! However, I'm glad the Doc is doing all he could to prevent potentially an unnecessary surgery. That's smart!

I don't believe the Advance negatives are more numerous than what we heard----I like the benefits-----I believe there is alot of them.

I think Dr Jezoir is extremely enthusiatic about the advance sling--but that's why I mentioned everything depends on the individual. We heard McCammons talk about all the successes, but you'll never know how each person is doing individually.

That why it is so very important that when people exchange ideas and experiences on this website, they are very honest. This is the one place where no one should leave anything out-----it's just too important in the overall decisionmaking for those who read these posts.

I hope I covered everything you asked. I will let you know in the next few weeks, if this medicine works on me.

Lion1

RRMCJIM

kreinholt said:

Incontenence
Thanks ismetals and griz. With me at this point, some days are better than others, probably depending on my liquid intake. Some days I can hold large amounts until I reach a restroom and other days I don't seem to be able to hold anything. But again, I mentally have to think about holding it by flexing my PC muscles to do it. I know that it is still early in my recovery (2 1/2 months since catheter removed) however I look forward to the day that I will be dry. Although I haven't let it stop me from doing the things I used to do like Karate with my son, snowboarding and going to a baseball game, it does take some advance planning and at this point is a real annnoyance. Thanks for the insight.

incontenence
Well I am humbled ...woke up soaked this morning, after being dry every night. Got cocky yesterday, wanted my morning coffee, 4 cups, then at lunch time I was dying for mexican food, so I did, god it tasted wonderful, Had a couple of Pepsi's, then for dinner I finished it with a big bowl of ice cream. Now today I looked at my bladder "no no" list...and there they all were....right there on the fridge, telling how it would irritate my bladder, and lose control... but OH NO,, I knew better, I am 3 days post cath after all.. I am going to do what I decide is best... Well like I said SOAKED,,, 5 depends couldn't control it all... so now my poor wife has to have more work because of me...we had to strip the bed and remake it... Follow your Dr orders...he does seem to know more than we do...lol kind of like ismetals drinking his wine and beer...lmao...love ya all
Jim ( Big Ugly Biker) ( and now stupid also) roflmao

tpelle

lion1 said:

tpelle,

Excellent questions and I'll try to answer them all. Now that I have settled down from my trip, let me lend some more perspective. I know my enthusiasm yesterday must have sounded like I had a cure, but what it really did give me more hope. Hope, that as you stated may result in not having a surgical procedure.

I believe that what Doctor Jezior told me was that in my specific condition that the Advance sling could supplement and drastically improve my incontinence, even with the contracting bladder. After examining me, he stated I am a good candidate for the Advane Sling.
I am still enthused about the Sling,however now with knowing exactly what my body is doing, it's not like the sling will cure-all. The ditropin that he prescribed will be a test really to see if the contractions subside. My previous uroligist gave me Detrol La--didn't work-----Vesicare---didn't work-----so I have been down the long road too! However, I'm glad the Doc is doing all he could to prevent potentially an unnecessary surgery. That's smart!

I don't believe the Advance negatives are more numerous than what we heard----I like the benefits-----I believe there is alot of them.

I think Dr Jezoir is extremely enthusiatic about the advance sling--but that's why I mentioned everything depends on the individual. We heard McCammons talk about all the successes, but you'll never know how each person is doing individually.

That why it is so very important that when people exchange ideas and experiences on this website, they are very honest. This is the one place where no one should leave anything out-----it's just too important in the overall decisionmaking for those who read these posts.

I hope I covered everything you asked. I will let you know in the next few weeks, if this medicine works on me.

Lion1

Jezoir's Enthusiasm for AdVance
Thanks, lion1. It's good to hear that Dr. Jezoir's enthusiasm for AdVance compares to our earlier understanding. He's doing the preliminary steps which could improve your incontinence to a point where you might decide not to exercize the surgery option, which itself might not result in total continence.

As you once said, it appears that our situations are similar. Apparently Dr. Jezoir found that you have a functioning sphincter which makes you a candidate for AdVance even though you have bladder contractions. In my case, during each of several cystocopys the doctor found that I was able close the sphincter tightly around the cystoscope. My sphincter works to a point. It allows me to get a full bladder while seated or in bed and to get to the bathroom without a major flood. However, when I am standing, shopping, treadmill walking, yardwork, etc, there is a steady drip, drip keeping the bladder depleted. I can feel the leakage spurts. Does this sound familiar?

I'll watch for your posts hoping that the meds work for you. tpelle

tpelle

I Hope We Haven't Discouraged You
Kreinholt: I hope that lion1 and my posts below haven't discouraged you. Although we haven't beaten incontinence yet, we are still trying. Perhaps our posts have been of some help to you and others who are on the way to normal or assisted continence following prostate surgery. tpelle

lewvino

RRMCJIM said:

incontenence
Well I am humbled ...woke up soaked this morning, after being dry every night. Got cocky yesterday, wanted my morning coffee, 4 cups, then at lunch time I was dying for mexican food, so I did, god it tasted wonderful, Had a couple of Pepsi's, then for dinner I finished it with a big bowl of ice cream. Now today I looked at my bladder "no no" list...and there they all were....right there on the fridge, telling how it would irritate my bladder, and lose control... but OH NO,, I knew better, I am 3 days post cath after all.. I am going to do what I decide is best... Well like I said SOAKED,,, 5 depends couldn't control it all... so now my poor wife has to have more work because of me...we had to strip the bed and remake it... Follow your Dr orders...he does seem to know more than we do...lol kind of like ismetals drinking his wine and beer...lmao...love ya all
Jim ( Big Ugly Biker) ( and now stupid also) roflmao

Jim.
Sorry it was a bad
Jim.
Sorry it was a bad morning for you! THose are some of the things that I dread once I start down the recovery road! Appreciate your warnings so I will pay attention to the No No's! Not sure If I'm lucky or not but I've never been a fan of coffee so won't have to worry about that! I was looking in the aisle at the drugstore the other day,,,hard enough to look at those pads, and things but trying to get my courage up before I have to actually buy some! Any way I saw they had some protective cover you could put down on the bed. Did you invest in one of those?

I've all ready cut out caffeine in my diet do to barretts espogaul reflux that I have and have actually switched to driking more water then diet drinks. I do a 12 ounce glass of pomengranite juice every morning but should have that out of the body before bedtimes.

I will listen to your advice and Follow the Doc!

Larry (lewvino)

kreinholt

RRMCJIM said:

incontenence
Well I am humbled ...woke up soaked this morning, after being dry every night. Got cocky yesterday, wanted my morning coffee, 4 cups, then at lunch time I was dying for mexican food, so I did, god it tasted wonderful, Had a couple of Pepsi's, then for dinner I finished it with a big bowl of ice cream. Now today I looked at my bladder "no no" list...and there they all were....right there on the fridge, telling how it would irritate my bladder, and lose control... but OH NO,, I knew better, I am 3 days post cath after all.. I am going to do what I decide is best... Well like I said SOAKED,,, 5 depends couldn't control it all... so now my poor wife has to have more work because of me...we had to strip the bed and remake it... Follow your Dr orders...he does seem to know more than we do...lol kind of like ismetals drinking his wine and beer...lmao...love ya all
Jim ( Big Ugly Biker) ( and now stupid also) roflmao

It does get better
Jim, I pretty much gave up coffee and alcohol for now. I will drink a decaf every once in a while but not as much (grande vs venti). My wife and I belong to a wine/dinner club and we attended our first one since the operation last weekend. I sipped the wines and didn't drink as many as I usually do and surprisingly had no noticeable issues and was able to enjoy the evening somewhat but was not entirely comfortable as I usually am. Probably because I wasn't buzzed like I usually am at those things, but I just didn't want to over do it.

After I got the catheter removed, I was waking up two to three times a night to go to the bathroom. Now, after almost three months of kegals, I seem to be able to sleep through the night and don't leak now when making a bee line to the bathroom. Still can't hold small amounts though. The first month and a half, I tried hard not to get discouraged and depressed, but it wasn't easy. I would find myself actually getting jealous of other guys who still had a prostate. Now after three months, I finally feel that I can beat the incontinence, maybe not this month, but somewhere in the near future. How are you feeling otherwise? Keep me posted on your progress and keep the faith.

RRMCJIM

kreinholt said:

It does get better
Jim, I pretty much gave up coffee and alcohol for now. I will drink a decaf every once in a while but not as much (grande vs venti). My wife and I belong to a wine/dinner club and we attended our first one since the operation last weekend. I sipped the wines and didn't drink as many as I usually do and surprisingly had no noticeable issues and was able to enjoy the evening somewhat but was not entirely comfortable as I usually am. Probably because I wasn't buzzed like I usually am at those things, but I just didn't want to over do it.

After I got the catheter removed, I was waking up two to three times a night to go to the bathroom. Now, after almost three months of kegals, I seem to be able to sleep through the night and don't leak now when making a bee line to the bathroom. Still can't hold small amounts though. The first month and a half, I tried hard not to get discouraged and depressed, but it wasn't easy. I would find myself actually getting jealous of other guys who still had a prostate. Now after three months, I finally feel that I can beat the incontinence, maybe not this month, but somewhere in the near future. How are you feeling otherwise? Keep me posted on your progress and keep the faith.

kreinholt
I am doing pretty well I think. Up until last night, I have been dry in the morning, but hard to hold the drips during the day while walking around. I am still positive, it is now my 4th day since the cath, so I feel very fortunate. It was just a hard lesson to learn I guess. I was told to stay away from certain items, as they would give my bladder a run for it's money...but hey ... I know my body... yea right .. My morning coffee will now either be decaf .... or nothing ... Pepsi hmmmmmm not sure there... I am a Pepsi junkie....will have to limit my intake however, if not eliminate it totally. One way or the other, I guess we are condemned to eat and drink properly... not really a bad thing ....erections are coming back all on their own.. seem to be having the morning woody every day now... haven't tried penetration yet tho, worry about leakage too much. Don't know if it would be an issue or not. I will just keep doing my kegels, and wait for more time to pass, I am sure with enough time, this too will be taken care of. Then sometime in the future, will try to reintroduce an item at a time , to see if I can handle it. Love spicy foods, but it is off the list for awhile also... d a m n ... took all the fun stuff away....lol
Jim

kreinholt

RRMCJIM said:

kreinholt
I am doing pretty well I think. Up until last night, I have been dry in the morning, but hard to hold the drips during the day while walking around. I am still positive, it is now my 4th day since the cath, so I feel very fortunate. It was just a hard lesson to learn I guess. I was told to stay away from certain items, as they would give my bladder a run for it's money...but hey ... I know my body... yea right .. My morning coffee will now either be decaf .... or nothing ... Pepsi hmmmmmm not sure there... I am a Pepsi junkie....will have to limit my intake however, if not eliminate it totally. One way or the other, I guess we are condemned to eat and drink properly... not really a bad thing ....erections are coming back all on their own.. seem to be having the morning woody every day now... haven't tried penetration yet tho, worry about leakage too much. Don't know if it would be an issue or not. I will just keep doing my kegels, and wait for more time to pass, I am sure with enough time, this too will be taken care of. Then sometime in the future, will try to reintroduce an item at a time , to see if I can handle it. Love spicy foods, but it is off the list for awhile also... d a m n ... took all the fun stuff away....lol
Jim

Sounds like your doing great
Sounds like your doing great considering... I had not heard about the spicy foods, but I can tell you that I am originally from Texas and love spicy foods. I will have to keep that in mind next time I am tempted. Did not really have any problem with erections although it is not quite as sensitive as it was so it takes a tad longer but they are still strong. At least it still works. Never tried the Viagra or other pills the doctor gave me. I too am not sure about penetration because there is some leakage. I am not a condom kind of guy, but it may be the solution to catching those trickles when they happen. I guess the key would be to be sure to at least try to urinate prior to, so you can be sure to start with an empty bladder. Good to hear you're doing well.

kreinholt

tpelle said:

I Hope We Haven't Discouraged You
Kreinholt: I hope that lion1 and my posts below haven't discouraged you. Although we haven't beaten incontinence yet, we are still trying. Perhaps our posts have been of some help to you and others who are on the way to normal or assisted continence following prostate surgery. tpelle

Not discouraged yet
I have been doing my kegals on a routine basis and I have noticed that I am able to hold large amounts with no problem at all. For example, I am able to sleep pretty much through the night (with a pad) now without having to get up and go. But when I do get up in the morning, I can hold it pretty easily until I get to the bathroom and release it. To me that is a drastic improvement. What I can't do yet is hold in small amounts. Seems backwards, but I am happy for what I can do at this point. Can't hold the trickles when I walk and stand though. It's the little victories that keep me going. Some days are better than others. I am still fresh in the recovery process. Thanks for everthing.

lion1

kreinholt said:

Not discouraged yet
I have been doing my kegals on a routine basis and I have noticed that I am able to hold large amounts with no problem at all. For example, I am able to sleep pretty much through the night (with a pad) now without having to get up and go. But when I do get up in the morning, I can hold it pretty easily until I get to the bathroom and release it. To me that is a drastic improvement. What I can't do yet is hold in small amounts. Seems backwards, but I am happy for what I can do at this point. Can't hold the trickles when I walk and stand though. It's the little victories that keep me going. Some days are better than others. I am still fresh in the recovery process. Thanks for everthing.

Don't be discouraged
I am praying for all you guys. I don't want any of you to be experiencing/talking about incontinence two years from now. I say that because if you've read my posts awhile back, my surgeon told me don't try anything surgery wise for two years. Let your body heal on it's own. Well I waited three years---a matter a fact I was operated on June 6, 2006. I know 666 Date, but that turned out good for me--no cancer.


I am bringing this up because a lot of you guys are just healing from your surgerys and your bodies are recovering slowly. But, you all have to have hope, that your incontinence will soon be a thing of the past and one way or another it will.

That's what Tpelle and I are going through even after a number of years, deciding the best route----the right staircase to follow and saving any more blasted surgery for later----much later hopefully.

Tpelle-- regarding that drip,drip,drip, standing up---during the URO this time I was closing my sphincter and holding that full bladder like a son of a gun. Then the Doc says ok, go ahead and pee. I wish during the course of a normal day, I could tell when I was dripping and hold it just like I did in front of the Doc. It's kind of fickle, but I think here is where the contracting bladder comes in----once that gets back to normal---I think most the dripping stops-----------------you know what I'm saying?

Oh well---got to run--not to the bathroom---just to watch a movie.

lion1