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Toilet after RP

User
Posted 23 Oct 2019 at 08:42

Good morning.

Everytime i stand up from sitting/sleeping i urinate into my Tena pants. Is this the correct thing to do or should i be squeezing (holding it in) and going to the toilet normally?

Your advice would be appreciated.

Jeff

User
Posted 23 Oct 2019 at 09:05

Jeff

This is completely normal. I see from your profile that you are 3 weeks post RP.

It is advised to clench to 'train the brain' each time you leak so eventually it will happen automatically. Difficult to remember every time, but try your best.

As someone said in the forum, degree of incontinence is pure luck and cannot predict how long it will take to recover in each individual. Incontinence is a frustrating issue, but if you approach with this mindset, you will at peace.

Some say kegel exercises do not work, but I do it anyway in case it worked for me. The correct technique I felt was difficult, but keep it simple. 

I am 10 weeks post op , just in the last week I have noticed a minor difference. I dont leak upto 10-11 am and dry mostly at night.

Hope this helps

User
Posted 23 Oct 2019 at 10:29

Jeff

As Thala said quite normal. Squeeze the pelvic muscles before you stand and stand up slowly, once upright keep the muscle tense until you get to the loo, then release. Don't go just for the sake of going but don't leave it until the last minute. It soon becomes second nature. Early days yet. Thanks Chris

User
Posted 23 Oct 2019 at 11:16

The way I do it....

Start clenching as you are standing up (or any straining) and gradually release. When releasing, it will at one point start to leak - maintain in that tome as long as possible. It will leak eventually when you have to 'let go', but thats how it will be. At one stage, even when you release the muscle tome would have improved to the point where you wont leak. It will take several weeks to get to that point.

Hope I make sense and I am no means an expert. It will be useful for you to see a pelvic physiotherapist, but difficult to fine a ' male pelvic physiotherapist' though.

Thala

User
Posted 23 Oct 2019 at 11:19
Hi Jeff

My response might confuse with Chris'.

Chris is completely right, hold it until you go to the loo.

My response is more about training the bladder - brain reflex - to hold it as long as possible.

Hope it all makes sense.

Thala

User
Posted 23 Oct 2019 at 13:03

It does get better. I’m four months on from surgery. I was dry at night after 3 nights but had stress incontinence when I stood up like. Keep doing the exercises, tense the muscles before standing or getting out of the car. After many weeks I could stand up, slowly relax and not need the loo. Continued using the pads until a couple of weeks ago. Could probably have stopped earlier but they were insurance, now much more confident.

User
Posted 23 Oct 2019 at 14:44

As others are saying - it will get better. I am 5 months on from RP and have done my PFE religiously 5 times a day. I do physical work now and do not leak during the day except in extreme circumstances when I forget to hold up the pelvic floor. I still wear a Tena 2 pad during the day which is probably unnecessary now, but it makes for insurance. At night I always use a pad but that is because I do enjoy my wine...too much.

All the best

User
Posted 08 Jan 2020 at 16:01

Good to hear.  Bet he is enjoying being catheter free! 

 

Edited by member 08 Jan 2020 at 20:28  | Reason: Not specified

User
Posted 18 Jan 2020 at 17:24

Progress. Glad you have friends to support you.

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User
Posted 23 Oct 2019 at 09:05

Jeff

This is completely normal. I see from your profile that you are 3 weeks post RP.

It is advised to clench to 'train the brain' each time you leak so eventually it will happen automatically. Difficult to remember every time, but try your best.

As someone said in the forum, degree of incontinence is pure luck and cannot predict how long it will take to recover in each individual. Incontinence is a frustrating issue, but if you approach with this mindset, you will at peace.

Some say kegel exercises do not work, but I do it anyway in case it worked for me. The correct technique I felt was difficult, but keep it simple. 

I am 10 weeks post op , just in the last week I have noticed a minor difference. I dont leak upto 10-11 am and dry mostly at night.

Hope this helps

User
Posted 23 Oct 2019 at 09:54

Thank you for your advice.

Are you saying i should clench first when i stand and then let it flow?

Jeff

User
Posted 23 Oct 2019 at 10:29

Jeff

As Thala said quite normal. Squeeze the pelvic muscles before you stand and stand up slowly, once upright keep the muscle tense until you get to the loo, then release. Don't go just for the sake of going but don't leave it until the last minute. It soon becomes second nature. Early days yet. Thanks Chris

User
Posted 23 Oct 2019 at 11:16

The way I do it....

Start clenching as you are standing up (or any straining) and gradually release. When releasing, it will at one point start to leak - maintain in that tome as long as possible. It will leak eventually when you have to 'let go', but thats how it will be. At one stage, even when you release the muscle tome would have improved to the point where you wont leak. It will take several weeks to get to that point.

Hope I make sense and I am no means an expert. It will be useful for you to see a pelvic physiotherapist, but difficult to fine a ' male pelvic physiotherapist' though.

Thala

User
Posted 23 Oct 2019 at 11:19
Hi Jeff

My response might confuse with Chris'.

Chris is completely right, hold it until you go to the loo.

My response is more about training the bladder - brain reflex - to hold it as long as possible.

Hope it all makes sense.

Thala

User
Posted 23 Oct 2019 at 13:03

It does get better. I’m four months on from surgery. I was dry at night after 3 nights but had stress incontinence when I stood up like. Keep doing the exercises, tense the muscles before standing or getting out of the car. After many weeks I could stand up, slowly relax and not need the loo. Continued using the pads until a couple of weeks ago. Could probably have stopped earlier but they were insurance, now much more confident.

User
Posted 23 Oct 2019 at 14:44

As others are saying - it will get better. I am 5 months on from RP and have done my PFE religiously 5 times a day. I do physical work now and do not leak during the day except in extreme circumstances when I forget to hold up the pelvic floor. I still wear a Tena 2 pad during the day which is probably unnecessary now, but it makes for insurance. At night I always use a pad but that is because I do enjoy my wine...too much.

All the best

User
Posted 24 Nov 2019 at 14:15

Almost 2 months after RP and i can definitely hold to go to the toilet....result!

Still minor drips when i'm standing/walking etc but confident that will get better.

Wearing pants for bed and get up 2/3 times a night for the toilet but at least i wake dry.

Getting there slowly.

User
Posted 30 Nov 2019 at 09:45

My husband is now pad dry at night 5 weeks on After RP up to wee 3 times during the night. but dribbled alot yesterday which he found distressing and depressing. Is this progress? He had a good day the previous day. I wondered if the cold weather made it worse. He is doing Kegels 6 times a day with the NHS Squeezy app and walking short distances gently. We have seen a gradual improvement. 

All the best to all on your recovery.

Edited by member 30 Nov 2019 at 15:42  | Reason: Not specified

User
Posted 30 Nov 2019 at 11:01

Buckslady

5 weeks after surgery it could be a bit of scab or debris in the urethra affecting his remaining sphincter. I would keep drinking water to help flush things out. 

Hope the recovery continues.

Thanks Chris

User
Posted 30 Nov 2019 at 11:13

Thank you Chris good point. It is early days in the recovery process.

Edited by member 30 Nov 2019 at 12:59  | Reason: Not specified

User
Posted 30 Nov 2019 at 14:15
It is like toilet training a toddler - it becomes easier but needs a lot of concentration ... get distracted or over tired and the brain cannot concentrate. If anything, it simply suggests that he may have overdone things a bit yesterday.

The fact that he is dry at night is a really good indicator that he will regain full continence eventually.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2019 at 15:16

Thank you Lyn. He is working hard at the

Kegels. I know you have responded on this topic before and appreciate your comments. He is keen to see an improvement however small. 

 

One other thing his confidence has really taken a hit and he is quite down. Not wanting to socialise yet. 

 

Edited by member 30 Nov 2019 at 15:47  | Reason: Not specified

User
Posted 30 Nov 2019 at 16:36
At 5 weeks post op, John's limit was shuffling around the block - certainly wouldn't have been socialising. But there again, he ad open surgery. Do you both possibly have some over expectations?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2019 at 16:46

May be we do. Both struggling emotionally with the enormity of the diagnosis operation localised prostatectomy and hope that we get answers at the 6 week check with the Urology  nurse at the hospital. 

 Will can walk for 30 mins he is past shuffling.  He feels well despite the incontenance and lack of sleep. We have a family lunch in 14 days which we are both concerned about. 

Edited by member 30 Nov 2019 at 20:28  | Reason: Not specified

User
Posted 30 Nov 2019 at 18:18

I see that your husband had open surgery, as mine will, how long was the basic recovery? I know it is a bit like saying how long is a piece of string but anything you can tell me would help. Thanks.

User
Posted 30 Nov 2019 at 18:51

6 months to a year was the recovery time quoted by the consultant due to incontinence.

6 - 8 weeks for operation healing of wounds etc. Not lifting or driving. 

  Every man is different.

Would suggest doing kegel exercises pre op. Eating well pre op and being in good shape help. 

Use NHS Squeezy for Men app. 

The worst part was coming home with the catheter and then the removal. First 2 weeks incontinence is dramatic.

Do take painkillers as advised. Constipation

Sachets for this ie Movicol 

Tena for men Pants /or Boots are excellent. Make sure you check the sizing.

Eating bland foods which don't aggravate the bladder. 

Drink water as advised. No alcohol or caffeine. 

 

 

Edited by member 02 Dec 2019 at 17:18  | Reason: Not specified

User
Posted 02 Dec 2019 at 09:33

Thank you for that. I found a company that ships incontinence products and everything arrived this morning. super quick. He was very fit & healthy before the diagnosis but a nasty infection knocked him for six. More his old self again now, albeit with that big C cloud hanging over him.

I keep reminding him about the exercises, must tell him to download the app.

He has already bought a giant bottle of lactulose which he needed when he had the infection.

I think he has an unrealistic expectation of how quickly he will recover so only time will tell.

We are both still getting our heads around the shock diagnosis, he went to the consultation on his own expecting the all clear as he had no obvious symptoms.

Thanks again.

Edited by member 07 Dec 2019 at 00:17  | Reason: Not specified

User
Posted 02 Dec 2019 at 12:39

Sounds positive .  Keep strong. It is indeed a shock.

Fingers crossed for you both.

Doing the kegels pre really helps.

When is the operation? 

User
Posted 02 Dec 2019 at 13:20

We have been guilty of being over confident of the recovery time in our haste to get the prostate removed. 5 weeks from diagnosis to operation. 

Patience is needed. 

Also he will find trapped wind is an issue post surgery. 

Any questions DM me. 

 

User
Posted 07 Dec 2019 at 00:14

Sorry for late reply he has another nasty UTI so not feeling brilliant.

His op is Friday the 13th!

I want to have a good cry but I am holding it all together.

User
Posted 07 Dec 2019 at 09:20

Stay strong if you can. 

 

User
Posted 07 Dec 2019 at 11:01

I am staying strong for him, I think when he is in hospital I may fall apart. I'm the person people turn too in a crisis so I have always had to be outwardly strong.

 

Going for a bit of r & r now with my daughter & granddaughter, Christmas Fair at my old grammar school. :-)

User
Posted 07 Dec 2019 at 11:11

I did the same felt it post  OP. 

Enjoy the weekend.

User
Posted 24 Dec 2019 at 15:51

How are things Denrog?

All well post op I hope. 

 

 

User
Posted 24 Dec 2019 at 21:37

Hi, thanks for asking.  I seem to be in a daze since all this happened.

The op went ahead as planned on the 13th, an open radical prostectomy(?), the surgeon kindly offered to ring me when surgery was finished. I was at a funeral and for two hours at the wake I held my phone in my hand - no call. Said goodbye to everyone and got in to my daughter's car to discover a missed call from him when he said he had removed the prostate and hoped to have a catch up call with me later. Unfortunately I haven't had another call so until we meet with the consultant in a few weeks time we are none the wiser.

My husband is doing extremely well although I know the catheter is getting on his nerves and he hasn't actually left the house since he came home a week ago. He was in robust good health before the op, cancer not withstanding, and he has a positive outlook.  I feel less positive about the future and I have to hide it.  The tears are still locked in but I do want to sleep an awful lot, I suppose when I'm asleep I am not thinking about the big C.

Hope you have a lovely Christmas.

Best wishes

User
Posted 24 Dec 2019 at 22:26
Denrog, you don’t seem to have given any information about what your husband’s cancer staging was, but the fact he’s had an RP indicates that the cancer was presumably localised, and that treatment’s been given with curative intent. Of course a cancer diagnosis is concerning, but there really no reason not to feel positive about the future. Localised prostate cancer is almost always a “little c”, not a big one. The overwhelming majority of men diagnosed with it don’t die from it.

Stop worrying about it and enjoy Christmas!

Best wishes,

Chris

User
Posted 25 Dec 2019 at 07:30

Hi 

The OP is done. You will be feeling that way. My hubby was the same hated the catheter and did not leave the house needing to stay close to home. Take care and rest up. I slept alot and cried in secret. Support each other. 

I echo what Chris says. Try to enjoy Christmas. 

User
Posted 25 Dec 2019 at 10:40

He was stage 4 and at least one highly suspicious lymph node was also removed.  Before the op the Prof. had said he expected him to need further treatment at Weston Park Hospital, which I assume meant radio therapy.

Right,  not showered or dressed yet and I am cooking dinner for my daughter, partner and glorious grandaughter. Time to get a move on .

The joy of a two year old really lifts our spirits!

 

Enjoy your day!

 

 

User
Posted 25 Dec 2019 at 12:39
If T4, presumably either locally or regionally advanced, but no spread to the bones or elsewhere in the body, or they wouldn't have done the RP?

T4 means incurable, as you know, but incurable does not mean terminal. There's every reason to suppose that your husband will be around for many years to come!

Best wishes,

Chris

User
Posted 25 Dec 2019 at 22:49

I do Hope that you had a good day. We had my sons dog with us who really made my 88 year old father happy. 

User
Posted 26 Dec 2019 at 01:36

Originally Posted by: Online Community Member
If T4, presumably either locally or regionally advanced, but no spread to the bones or elsewhere in the body, or they wouldn't have done the RP?

T4 means incurable, as you know, but incurable does not mean terminal. There's every reason to suppose that your husband will be around for many years to come!

Best wishes,

Chris

 

Denrog has previously posted that her husband is T3 so I assume the stage 4 comment is related to his PI-RADS score - I don't think they would have offered open RP with adjuvant RT if he was incurable. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Dec 2019 at 08:06
Thanks for clarifying that, Lyn. I was surprised to hear that RP had been given for T4! If he was T3 then treatment would have been curative in intent.

Cheers,

Chris

User
Posted 08 Jan 2020 at 14:33

Christmas & New Year celebrations were quiet this year. We were so tired that we were in bed before the midnight chimes.

The catheter has been making him thoroughly sore & miserable, we were told to expect it to be removed  by 14 days post op. I made numerous calls to the hospital trying to chase up the missing appointment, finally yesterday, 25 days post op he had a cystogram & the catheter was removed albeit after a total of 8 hours at hospital.

Today for the first time since surgery he walked up to the village for his newspaper. He remains positive and continence is far better than expected. 

User
Posted 08 Jan 2020 at 16:01

Good to hear.  Bet he is enjoying being catheter free! 

 

Edited by member 08 Jan 2020 at 20:28  | Reason: Not specified

User
Posted 08 Jan 2020 at 19:10

That’s a long time to wait for catheter removal but glad to hear it has gone well and his continence is good.

Ido4

User
Posted 08 Jan 2020 at 23:10

Very long time I think he got 'lost' in the system, community nurses forgot about their planned visit as well.  Moral: avoid surgery just before Christmas & New Year Holidays

User
Posted 17 Jan 2020 at 12:16

Well his good progress continues. Virtually no incontinence and he had a night at the pub with his 'mates'  yesterday.

He does tire quickly and tends to be in bed by 10 at the latest.  The surgeon has requested a specific CT scan before his review appointment so we have that coming up and a PSA blood test next Monday. 

I remain positive in his company and have only shared my fears with a couple of close friends.

User
Posted 18 Jan 2020 at 17:24

Progress. Glad you have friends to support you.

User
Posted 18 Jan 2020 at 17:57

Glad to hear things are going well.

Ido4

User
Posted 18 Feb 2020 at 14:35

Originally Posted by: Online Community Member

Very long time I think he got 'lost' in the system, community nurses forgot about their planned visit as well.  Moral: avoid surgery just before Christmas & New Year Holidays

 

I would have to agree. Unfortunately sometimes you just can't wait, but not a lot happens over the 12 days of Xmas.

There's another moral here - if you think you're waiting too long, you probably are and you should chase up vigorously. Ring the specialist nurse - they rarely answer, but they will ring back.

User
Posted 18 Feb 2020 at 16:05
Don't worry I rang many hospital depts and the specialist nurses.

Last week we saw the surgeon, first time since the op. He told us the op wasn't done a day too soon, larger than thought and Gleeson 9 by the time of surgery. PSA down to 0.01 so things are definitely improving. Because of the highly aggressive nature of this particular cancer there is the likelihood of spread. He will be reviewed again in 12 weeks and a decision will be made as to whether radio therapy will be needed, in the meantime the surgeon wants him to continue getting well and getting his strength back.

He is doing amazingly well and virtually no incontinence. We were in a local shopping centre this morning when I spotted a prostate UK badge on one of the low key security men, I recognised it immediately and we had a lovely chat and when my husband re appeared I left the two of them chatting. There was one year between there ops and diagnoses. I am a great believer in things happening for a reason and this chance meeting confirmed that. He also told me that Burtons (the tailors) sold the badges and my husband and myself now have a badge each.

 
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