Incontinence questions

[Archives1]

I'm a very healthy, fit and active 67 year old man who was diagnosed with Prostate cancer in March. I underwent a radical robotic prostatectomy 10 days ago....the surgery went very well and I actually feel very well. I had my catheter removed yesterday and was told by my doctor that I would experience some "leaking and dribbling" of urine for a period of time until the bladder muscles heal and strengthen. I realize it's only been a day.....but, I am experiencing total incontinence right now. I have zero control of my bladder and I am leaking urine non-stop. In no way was I expecting this! I'm changing my "diaper" every hour! I guess my question(s) is.....was this to be expected? Typically, how long does it take to start regaining at least some basic level of bladder control? Obviously, I'm very concerned about this and would like to hear from some of you with honest first hand experiences about initial incontinence experiences and what I should be expecting looking forward. Thanks!

 

[Archives1]

I had mine removed Jan 28 2022 5 1/2 months and still issues. Doing all my exercises,and under the impression 3 to 18 months. That said 2 people I know with in 2 months pretty much all good. It sucks but I know I am heading in the right direction. I can make it through the night now. So just do what they tell you be good on the kegel exercises.

 

[Archives1]

Thanks for your reply. Were you totally incontinent after catheter removal? How long was it before you regained at least some level of control?

 

[Archives1]

I had my prostatectomy in February, 2019. Major improvement since but still using 2-3 pads/day. Am told that this as good as it will get.

I am considering the sling procedure but am not excited about more surgery. Especially a procedure that may not solve the problem. I'd be curious as to what level of success others have had with the procedure.

 

[Archives1]

@budrand Congratulations on your successful surgery. I had mine 11 months ago. The first days after removal of catheter are challenging, to say the least, and what you're experiencing is expected. Gradually you will gain more muscle control, and you should start to see some improvement over the next several weeks, some of the improvement may even be dramatic at first. For example, over the next several weeks you may notice that you no longer have to change your padded underwear every hour but maybe only 4 times a day. As soon as it's advisable, do your kegel exercises - not too strenuously - and try to walk as much as possible. Stock up on lots of supports - padded underwear, plastic diapers to go over the underwear, bed padding, wipes and towelettes. At 11 months, I still wear padded underwear every day, despite minimal leakage; I still sleep with bed padding, despite no more leakage at night; and I keep the other things at the ready, just in case. I find that I have more challenging days than others, and there doesn't seem to be any rhyme or reason. Drink plenty of water, but refrain from drinking anything that can be a diuretic, as much as possible. I'm a daily coffee drinker, but I limited my coffee to just first thing in the morning when I was at your stage. I made the mistake of eating a piece of watermelon too soon after surgery, and that proved to be a huge, wet mistake. Don't lose hope; it will almost surely get better. Please let us know how you're progressing, and don't be shy about asking questions.

 

[Archives1]

I'm not someone with experience with prostate issues, but from what I've observed on here as well as with other types of health problems, many doctors seem to understate the degree of side-effects and the aftermath of surgeries. As you read the postings of other men here, you'll likely notice that incontinence from the procedure you had lasts longer and is worse than suggested by your pcp. It may be that serious bladder leakage is not the norm, but it may also be that your doctor is predicting a best-case-scenario, so as to encourage you to opt for the surgery. Life with incontinence is better than not surviving the cancer. I would encourage you to look to the future- beyond this period and, as you are already doing, connect with others here who are experiencing the same things. From what I've seen and read, things will get better for you. Hope to hear more as you continue on this journey.

 

[Archives1]

I was totally incontinenced, took me about 2 months to get little control. With any type of physical activity like golf I replace my gaurd every 9 holes. So about every 2 hours.when I am sitting in the house watching TV I do have a bit more control about 2 to 3 pads the whole day.

 

[Archives1]

58 years old here. Had prostatectomy in December 2020. Very little if any control for several days after catheter removal. Gradually started getting better. Within a couple of weeks I could make it to the bathroom door. Biggest issue was I did not have an urge to urinate while sitting at first. When I would think it was about time to go I had almost I control.

It is a slow process for some and fast for others. I would say I was kind of typical. By late April of 2021 I was mostly continent and I still am.

One key thing is do not become dehydrated. I know it sounds harsh to be told to drink when you cannot control urine but staying hydrated (with water) helps with the healing process.

Best wishes, it is a frustrating journey but hang tough.

 

[Archives1]

Hey Joel....great reply! Thank you so much for all the info. It's reassuring to hear that what I'm experiencing right now isn't abnormal! I'm an avid walker, usually 2-3 miles a day....so, I'll keep that up! I've never been a big water drinker, but I'll make the effort to start drinking more (even though I know it'll all be in my padded underwear within several minutes!" Thanks again!

 

[Archives1]

Don't know why Urologists have so much difficulty in being honest with patients. This is a very common complaint on this site, and it is very frustrating.

 

[Archives1]

66 year old fit male, and had my radical Prostatectomy 7 weeks ago. I was leaking and dripping alot for the 1st week. Then slowly started very little at night, which was a relief, and somewhat better now while siting, but absolutely no control when standing, walking or any upright movement. I am like you, not expecting this much leakage, but Urologists or Doctors in general do not set different degrees of Incontinence. So someone with occasional drips when coughing or sneezing is also designated with Incontinence, the same as you and I, even though there is a large degree of difference. I am told to be patient, and my Urologist doesnt want to discuss the issue until at least 3 months. So i try to do my Kegels 3 to 6 times a day, and wear my Depends and/or Tena's to not let life pass me by. Good Luck with your journey budrand, and hopefully both of us with by dry one day.

 

[Archives1]

@stuart I suspect they are afraid patients will forego surgery if they are given a truer sense of the extent of the side effects they are likely to experience post-surgery. Surgeons are less concerned about quality of life than they are about saving lives - which I totally get. But, I think it would be important to have pre- and post-surgery counseling to better prepare patients for how to cope with the various side effects of surgery.

 

[Archives1]

Like you Fontoban, the leaking and dribbling is not terrible when I'm sitting or lying down. However, the second I stand up to walk or move.....it's like the flood gates completely open up. I have no control!

 

[Archives1]

I went in to surgery I consider well prepped for possible outcomes. My dr did not discuss a lot however he gave me an excellent book discussing different stages of cancer incontinence and ED.

 

[Archives1]

@stuart I suspect they are afraid patients will forego surgery if they are given a truer sense of the extent of the side effects they are likely to experience post-surgery. Surgeons are less concerned about quality of life than they are about saving lives - which I totally get. But, I think it would be important to have pre- and post-surgery counseling to better prepare patients for how to cope with the various side effects of surgery.

That may be their reason for not be totally honest with us, however it is not a valid excuse. As patients, we deserve to be supplied with honest expectations. I had such a bad experience with a urologist not being honest with me before a procedure that it has been 5 years since I have been to any urologist. I have recently got a recommendation from my internist to a different urologist and I will try once again. However, my level of trust in urologist has been damaged by being lied to.

 

[Archives1]

As others have said, the journey back to bladder control after a RP takes several months. A year or longer is not uncommon. The good news is that you'll likely get back to a relatively normal life long before you're completely dry all day. The flow slows to a trickle, and then to occasional drips/spurts. As much as you can, focus on all the things you’re still able to do, rather than on incontinence. Keep us posted on your progress. We're pulling for each other here!

 

[Archives1]

Everyone is different. Some recover quickly, some it takes longer. Keep doing what doctors say. Don't get discouraged.

 

[Archives1]

I had my surgery October last year and like you I was shocked by incontinence after Cather removal but soon moved on and by the second week I could get to the toilet in time. I became dry at night at about week 5 and then pushed on with my kegal exercises and walking. I am 9 months in an wear one pad a day but it has been a hard journey. I I’ve just had my second dry day in a week and hope to be dry in the future.
Patience and hard work will hopefully get you there. I have been so impressed by the information I get from this forum and keep asking questions. I have days where I leak and days where I don’t but I am hopeful I will get there. The first few weeks are a shock and you should have been warned. Persevere and have faith, you will get there. I can live a normal life after 9 months and did after 3. Adjustment is needed but normality is there to be achieved. Good luck and have patience. All the best.

 

[Archives1]

I had RP surgery early November 2021. I too was not well informed by my urologist as to what to expect with incontinence. I knew it was going to be an issue, but had no clue how life-changing it would be. It has been a slow process as with many in this forum. Now at 7-1/2 months I go through one pad per day, unless I am engaged in some heavy activity. I was able to stay completely dry at night from the very beginning, and am dry while sitting or laying down. I have determined, as many have stated, that it is a matter of extreme patience, and not getting too down about it. Participate in regular activities as much as you can, but always be prepared for an emergency. I play on a softball team, and running the bases or in the outfield can cause some leakage. But I haven't had a major problem yet and I decided to not let my incontinence determine whether I could play or not. Recently I contracted a cold, and the coughing became a huge issue as I was not able to have much control with surges and went through several pads a day until that was resolved. Now I am back to "normal" and starting to see incremental progress again. Advise that you never get sick, and never cough. Good luck with that! Stay the course, it does get better and you slowly learn to adapt, but be prepared, and have a more normal life.

 

[Archives1]

I had PR surgery in March 2020. I have leaked nonstop ever since. I had surgery on March 25 of this year to have an AUS device implanted. I am waiting to see if it works or not.