Incontinence post surgery and disappointment

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Had robotic radical prostectomy on Sept 28th. Up and walking following day and went home. Three days later had bloody Foley bag and clotting of Foley. 3 ED and 2 ambulance trips and 3 day admission due to blocked catheter until being discharged from hospital. Had Foley for 3 weeks due to bladder leak via cystogram. Having lots of urge incontinence 8 days post catheter removal. 6-7 pads a day. Have been doing kegels since catheter removal. Very bad leakage when walking. I am really frustrated. I am 57 years old and in very good physical shape. 5'10" 170 lbs. Work physical jobs on our farm and work full time in hospital. Looking to return to work in a few weeks but can't see that happening if current situation does not improve. I am also still having some discomfort (tightness) in abdomen 4 weeks post surgery. I also have a history of past depression that I feel at times due to difficulty sleeping and worrying. I am so glad I have a great family to help me and a relationship with the Lord to help me.

 

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Please check with your doc about doing kegals this soon after surgery. It’s my understanding that there needs to be a rest/recovery period before starting. Also, your level of incontinence sounds completely normal. Think in terms of months of gradual improvement. Keep in touch on this board. You'll get good advice from lots of guys who have been through this. And yes, your relationship with the Lord will be a definite plus!

 

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Jim, it gets better. You are still in very early recovery. Allow your body time to heal. It will, esp. since you are in good physical shape. Your body has just undergone tremendous trauma, and it needs time to right itself. Your frustration is understandable, but stressing about the speed (or lack thereof) of your recovery will not do you or your bladder any favors.

 

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Don’t be discouraged! Sorry to hear about your problem with the cursed Foley but other than that your recovery sounds fairly typical for one month out. 6-7 pads/day is usual in early recovery. It gets better. Don’t expect a lot of improvement for a few months (could be 4-5 months but everyone is different) but then you’ll see a big change for the better. It usually takes 12-16 months to get to 95% dryness. Hang in there. As far as the discomfort, just remember what this robot and your surgeon did inside you. You probably have 6 or 7 surgical incisions and lots of internal lesions which have to heal. Those will feel much better in another few weeks. Enjoy every day! (Hopefully without any cancer).

 

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Sorry for all u r going thru, but as others on this forum will tell u, ur incontinence is normal at this time period post surgery. I had my RP May 4th, and like u, had no bladder control when walking or activities. It will get better, but your improvement will be measured in weeks or months, not days. Im almost at 6 months PostOp, and am just now down to 2 Tena pads a day with no diapers. It's been a glacier slow improvement, and can be depressing at times, but this forum is very helpful. Lean on their knowledge, keep ur chin up and good luck my friend.

 

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Jimfrompa Hang in there my friend. It’s unfortunate you had to deal with those complications. I also underestimated the impact of the incontinence even though my surgeon told me exactly what to expect. I returned to work at 8 weeks and am now at 10 weeks. Leak constantly while standing or walking, slightly better sitting or laying down. My abdomen was a bit sore for a week or so but not bad. For me the most discomfort was in my “taint”. I’m still uncomfortable when I sit down. Not terrible but sore like I got kicked there. I did find returning to work helped enormously with my mental health- was spending too much time with self pity the last week or two at home. However, returning to work is difficult with the amount of pad changes I need and I’m miserable working “wet” all the time. I’m trusting in what others have told me that with more time it will improve. Hoping you continue to get better too and know that you are not alone in dealing with this situation. Most guys I’ve talked to say at least 3-4 months before significant improvement occurs. There is a good support group in the Allentown area if you are nearby.

 

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Sorry for all u r going thru, but as others on this forum will tell u, ur incontinence is normal at this time period post surgery. I had my RP May 4th, and like u, had no bladder control when walking or activities. It will get better, but your improvement will be measured in weeks or months, not days. Im almost at 6 months PostOp, and am just now down to 2 Tena pads a day with no diapers. It's been a glacier slow improvement, and can be depressing at times, but this forum is very helpful. Lean on their knowledge, keep ur chin up and good luck my friend.

 

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Jimfrompa Hang in there my friend. It’s unfortunate you had to deal with those complications. I also underestimated the impact of the incontinence even though my surgeon told me exactly what to expect. I returned to work at 8 weeks and am now at 10 weeks. Leak constantly while standing or walking, slightly better sitting or laying down. My abdomen was a bit sore for a week or so but not bad. For me the most discomfort was in my “taint”. I’m still uncomfortable when I sit down. Not terrible but sore like I got kicked there. I did find returning to work helped enormously with my mental health- was spending too much time with self pity the last week or two at home. However, returning to work is difficult with the amount of pad changes I need and I’m miserable working “wet” all the time. I’m trusting in what others have told me that with more time it will improve. Hoping you continue to get better too and know that you are not alone in dealing with this situation. Most guys I’ve talked to say at least 3-4 months before significant improvement occurs. There is a good support group in the Allentown area if you are nearby.

Thanks to all you guys. I have been disappointed by my progress but great to hear some encouragement from you guys. I tend to be very impatient.

 

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Jimfrompa Hang in there my friend. It’s unfortunate you had to deal with those complications. I also underestimated the impact of the incontinence even though my surgeon told me exactly what to expect. I returned to work at 8 weeks and am now at 10 weeks. Leak constantly while standing or walking, slightly better sitting or laying down. My abdomen was a bit sore for a week or so but not bad. For me the most discomfort was in my “taint”. I’m still uncomfortable when I sit down. Not terrible but sore like I got kicked there. I did find returning to work helped enormously with my mental health- was spending too much time with self pity the last week or two at home. However, returning to work is difficult with the amount of pad changes I need and I’m miserable working “wet” all the time. I’m trusting in what others have told me that with more time it will improve. Hoping you continue to get better too and know that you are not alone in dealing with this situation. Most guys I’ve talked to say at least 3-4 months before significant improvement occurs. There is a good support group in the Allentown area if you are nearby.

Really want to return to work but I am up and on my feet all day. Very little sitting and when I walk I can just feel myself filling up the pad. Have appointment with doctor tomorrow and will talk things over with him concerning returning to work.

 

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Great idea to touch base with your surgeon. Your situation as far as work is identical to mine. It is a miserable experience. Soaking pads every 2 hours( I wear a pair of depends briefs and use a depend pad inside). Trying to balance advice is tough. Physical therapist wants me drinking more water daily to get bladder “retrained” but if I’m up walking or standing it’s just pouring out. Even had a couple instances of a trickle down my leg which is embarrassing but not the end of the world. You can probably get rid of your khakis for the foreseeable future. I know I’ll get through this and you will too but it’s hard. I’ve enjoyed a great healthy life to this point so if this is the worst I have to deal with I will do it. So many others are struggling with worse.

 

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@Jimfrompa,

I am 59 years old, near your age, and had a radical prostatectomy back in May of this year. I was very concerned when the incontinence didn't heal over the first few weeks. But after 8 weeks, I started to see a change in the output levels. Then at 3 months, it improved again. Now after 5 months, it is even better.

So hang in there - as one of the other posts mentioned, think in terms of months and not days or weeks.

Also, I am doing physical therapy (PT) which has also helped in my improvement. I read on this board that other men have improved after doing PT. Perhaps ask your surgeon when you can begin to see a physical therapist to assist in the healing process.

 

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It does get better. I'm 1yr post. Still have a little leaking with exertion. Do the kegals and walking.
I'm trying a bladder med starting today to try and help the remaining leaks. Good luck recovery is a marathon not a sprint.

 

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It does get better. I'm 1yr post. Still have a little leaking with exertion. Do the kegals and walking.
I'm trying a bladder med starting today to try and help the remaining leaks. Good luck recovery is a marathon not a sprint.

Thank you Pat. I need encouragement and positivity. Hope the med helps.

 

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@Jimfrompa,

I am 59 years old, near your age, and had a radical prostatectomy back in May of this year. I was very concerned when the incontinence didn't heal over the first few weeks. But after 8 weeks, I started to see a change in the output levels. Then at 3 months, it improved again. Now after 5 months, it is even better.

So hang in there - as one of the other posts mentioned, think in terms of months and not days or weeks.

Also, I am doing physical therapy (PT) which has also helped in my improvement. I read on this board that other men have improved after doing PT. Perhaps ask your surgeon when you can begin to see a physical therapist to assist in the healing process.

Thank you jwhillyer. Love hearing the positive outcomes. I'm just an impatient person. Hope things continue to improve for you.

 

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Great idea to touch base with your surgeon. Your situation as far as work is identical to mine. It is a miserable experience. Soaking pads every 2 hours( I wear a pair of depends briefs and use a depend pad inside). Trying to balance advice is tough. Physical therapist wants me drinking more water daily to get bladder “retrained” but if I’m up walking or standing it’s just pouring out. Even had a couple instances of a trickle down my leg which is embarrassing but not the end of the world. You can probably get rid of your khakis for the foreseeable future. I know I’ll get through this and you will too but it’s hard. I’ve enjoyed a great healthy life to this point so if this is the worst I have to deal with I will do it. So many others are struggling with worse.

Exactly how I feel boomer. I work in a hospital so I see people in much worse situations than myself. I work in an ICU. I need to slow down and realize this may be a long journey, but lots of people have made it through much longer ones than me.

 

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Agree with all of the above. Your body has been thru a lot and it takes time to heal. You can’t just “get back to where you were”. Unfortunately it takes time. But slow progress is still progress and it will get better. Faith in Gods healing power is a tremendous help.
When you go back to work, it should probably start with part time and maybe a modified schedule. Best of luck.

 

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Agree with all of the above. Your body has been thru a lot and it takes time to heal. You can’t just “get back to where you were”. Unfortunately it takes time. But slow progress is still progress and it will get better. Faith in Gods healing power is a tremendous help.
When you go back to work, it should probably start with part time and maybe a modified schedule. Best of luck.

Thank you Harris. Don’t have part time ability with work. I’m praying for the besr

 

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@Jimfrompa

Hi Jim,

I am 54 years old and I also had a robotic radical prostatectomy on 9/14, so I am about 1.5 months out.

The part that was the hardest for me is my surgeon not setting my expectations, especially about the extent of the incontinence or the erectile disfunction (ED) - especially, at FIRST. I was not told to bring anything to the appointment to have the catheter removed, so I was completely unprepared. I assumed they would give me what I needed there and tell me what I would need going forward...WRONG! The nurse removed the catheter (that was a new experience, but not really that bad), said I could get dressed and left. There I was uncontrollably leaking and dripping all over the floor. My wife went out and found another nurse who helped me and brought me a diaper to wear. The ED is a whole other story - no expectations for that either and NOT any progress so far...

I was very depressed about BOTH issues. Originally, I had no control. Leaking constantly, bed wetting at night - gushes when stand, reach to the side or any exertion. For me, after just a few weeks, post catheter, the bed wetting pretty much completely stopped, but still wear pads at night for the occasional leak and sitting is almost completely dry. If I wait too long, when I stand, I have leaks, but have to balance that with trying to 'retrain' my bladder!

The other leaks are SLOWLY getting better... I guess that does just take time, but for me at 1.5 months, I am so much better than the start, that it is night and day difference - for the BETTER!!! Another thing my surgeon/Dr. never told me, in fact, told me the opposite, is that what you eat and drink can irritate your bladder. My Dr. said NO RESTRICTIONS! I read on these forums and online about all the things that can irritate, so I went to water only (not forever, but during healing), as found out caffeine (yes, including coffee!), sodas (carbonation), spicy stuff, many fruits/vegetables, and many others (easy to Google) affect your bladder...cut out all that and helped tremendously!

Luckily, all my work is on a computer and I can work from home. I would actually RATHER be in the office, but just not time yet...as others have said, all the pad changes can be too much trouble and just thinking about it all the time is mentally and physically exhausting. Maybe by the beginning of next year, I can get back to work and just stay home through the holidays. I do still get out. I coach my son in sports, hang out with friends on occasion, go to church regularly, etc. as I don't think being a hermit at home is good mentally - just takes a lot of effort when I plan something.

Anyhow, here is an idea for those of you who have to work on your feet, etc...
PENIS CONDOM CATHETERS:

Condom catheters are external urinary catheters that are worn like a condom. They collect urine as it drains out of your bladder and send it to a collection bag strapped to your leg. They’re typically used by men who have urinary incontinence (can’t control their bladder).

External urinary catheters are less invasive than internal catheters, which drain urine from your bladder via a thin tube inserted into your urethra (Foley catheter) or via a small incision in the skin above your bladder (suprapubic catheter).

Internal catheters are used in hospitals for people who can’t get up to go to the bathroom or who have trouble emptying their bladder (urinary retention).

Men often prefer condom catheters over internal urinary catheters because they’re easier to use, can be changed at home, and are noninvasive (that is, nothing is inserted into their body).

Keep reading to find out who’s a good candidate for an external condom catheter, how to use one, benefits and disadvantages, and more:

Condom Catheters: How to Use, What to Know

Condom catheters are external (noninvasive) urinary catheters that are worn like a condom. They collect urine as it drains out of your bladder and send it to a collection bag strapped to your leg. Learn who's a good candidate for this type of catheter and how to use it.

www.healthline.com

Here are some sites where you can buy them:

https://www.amazon.com/s?k=condom+cathere&adgrpid=1334807989701860&hvadid=83425718984326&hvbmt=be&hvdev=c&hvlocphy=71761&hvnetw=o&hvqmt=e&hvtargid=kwd-83426089006871%3Aloc-190&hydadcr=4067_13192417&tag=mh0b-20&ref=pd_sl_15ltc8f5p0_e

Condom Catheters

Better Health - Dynamic Landing Page Ostomy Supplies, Urology Supplies, Stoma Products

joinbetter.com

Hope some of this helps!

Good luck, reset expectations and get some exercise, etc. but take it easy - you & your body need rest, too, especially after work or going out!

Praying for you and all - +God+bless+

 

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Thank you

@Jimfrompa

Hi Jim,

I am 54 years old and I also had a robotic radical prostatectomy on 9/14, so I am about 1.5 months out.

The part that was the hardest for me is my surgeon not setting my expectations, especially about the extent of the incontinence or the erectile disfunction (ED) - especially, at FIRST. I was not told to bring anything to the appointment to have the catheter removed, so I was completely unprepared. I assumed they would give me what I needed there and tell me what I would need going forward...WRONG! The nurse removed the catheter (that was a new experience, but not really that bad), said I could get dressed and left. There I was uncontrollably leaking and dripping all over the floor. My wife went out and found another nurse who helped me and brought me a diaper to wear. The ED is a whole other story - no expectations for that either and NOT any progress so far...

I was very depressed about BOTH issues. Originally, I had no control. Leaking constantly, bed wetting at night - gushes when stand, reach to the side or any exertion. For me, after just a few weeks, post catheter, the bed wetting pretty much completely stopped, but still wear pads at night for the occasional leak and sitting is almost completely dry. If I wait too long, when I stand, I have leaks, but have to balance that with trying to 'retrain' my bladder!

The other leaks are SLOWLY getting better... I guess that does just take time, but for me at 1.5 months, I am so much better than the start, that it is night and day difference - for the BETTER!!! Another thing my surgeon/Dr. never told me, in fact, told me the opposite, is that what you eat and drink can irritate your bladder. My Dr. said NO RESTRICTIONS! I read on these forums and online about all the things that can irritate, so I went to water only (not forever, but during healing), as found out caffeine (yes, including coffee!), sodas (carbonation), spicy stuff, many fruits/vegetables, and many others (easy to Google) affect your bladder...cut out all that and helped tremendously!

Luckily, all my work is on a computer and I can work from home. I would actually RATHER be in the office, but just not time yet...as others have said, all the pad changes can be too much trouble and just thinking about it all the time is mentally and physically exhausting. Maybe by the beginning of next year, I can get back to work and just stay home through the holidays. I do still get out. I coach my son in sports, hang out with friends on occasion, go to church regularly, etc. as I don't think being a hermit at home is good mentally - just takes a lot of effort when I plan something.

Anyhow, here is an idea for those of you who have to work on your feet, etc...
PENIS CONDOM CATHETERS:

Condom catheters are external urinary catheters that are worn like a condom. They collect urine as it drains out of your bladder and send it to a collection bag strapped to your leg. They’re typically used by men who have urinary incontinence (can’t control their bladder).

External urinary catheters are less invasive than internal catheters, which drain urine from your bladder via a thin tube inserted into your urethra (Foley catheter) or via a small incision in the skin above your bladder (suprapubic catheter).

Internal catheters are used in hospitals for people who can’t get up to go to the bathroom or who have trouble emptying their bladder (urinary retention).

Men often prefer condom catheters over internal urinary catheters because they’re easier to use, can be changed at home, and are noninvasive (that is, nothing is inserted into their body).

Keep reading to find out who’s a good candidate for an external condom catheter, how to use one, benefits and disadvantages, and more:

Condom Catheters: How to Use, What to Know

Condom catheters are external (noninvasive) urinary catheters that are worn like a condom. They collect urine as it drains out of your bladder and send it to a collection bag strapped to your leg. Learn who's a good candidate for this type of catheter and how to use it.

www.healthline.com

Here are some sites where you can buy them:

https://www.amazon.com/s?k=condom+cathere&adgrpid=1334807989701860&hvadid=83425718984326&hvbmt=be&hvdev=c&hvlocphy=71761&hvnetw=o&hvqmt=e&hvtargid=kwd-83426089006871%3Aloc-190&hydadcr=4067_13192417&tag=mh0b-20&ref=pd_sl_15ltc8f5p0_e

Condom Catheters

Better Health - Dynamic Landing Page Ostomy Supplies, Urology Supplies, Stoma Products

joinbetter.com

Hope some of this helps!

Good luck, reset expectations and get some exercise, etc. but take it easy - you & your body need rest, too, especially after work or going out!

Praying for you and all - +God+bless+

Thank you. The incontinence is disappointing since I am young and am very active person. Will check into catheters. Doctor suggested to use Cunningham clamp during busy times at work. Really want to return to work but a little concerned and worried. Thank you for the prayers and will return them back to you.

 

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@Jimfrompa It sounds like you need a pull-up or a diaper for while you’re walking. I recommend trying the discreet Depend Night Defense (the thickest Depend, available at every grocery Play 5140 8 o’clock what temperature is 20° on low today or pharmacy store) but if that doesn’t help enough, you can use the search/magnifying glass option to read countless other posts about thicker diapers.