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RALP update

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User
Posted 27 Jan 2022 at 08:12

Hi All


So after having the RALP surgery on the 24th Jan and as per my previous post, was so scared of what was going to happen. 


so here is my update of so far and up to day 3 - woke from surgery and was surprised how little discomfort there was. More of an annoyance than anything else. The staff as hospital were so good and yes they get you up and moving quickly which is fine.


the gas they use is not painful but can be annoying especially around the shoulder but I found across the abdomen the worst. It felt like a constant gurgling of air and when you pass wind, that is such a blessing! 


food wise I am not hungry to be honest, I have been eating yoghurts and soft food and first slice of toast did come back up again. Quite a few calls to hospital and urology team eased my mind and they say it is common. I would love to say I am walking lots, more like an old man shuffling along but am doing it along with leg exercises when sat down.


so am hoping to actually pass something soon but don’t feel there is anything there to pass so will carry on with the laxative sachets twice a day and drinking water.  


had lots of support from people on here who have  been through it all. You need it guys so please reach out. Not everyone is the same remember. I am now booked in for catheter to be removed in 10 days which will be so good as I can’t wait to lay on my side! 


 

User
Posted 02 Feb 2022 at 09:25

One thing to bear in mind when you have your catheter removed is that you are likely, based on my own experience, to leak quite a bit for a number of hours after the catheter is removed. I was totally incontinent for around 6 hours after removal and changed my incontinence pants several times. So, make sure you take a few pairs of incontinence pants and pads with you to the hospital ( I only took one pair of pants and that was not enough) and that you have a good supply at home. After 6 hours or so I regained around 80 % continence (mostly dry at night and when sitting down) and  just over 4 weeks on from the removal of my catheter am now around 90% continent.


 


Sleep wise, I was waking at different times during the night when I had the catheter in and this continued for about a week after it was removed. Four weeks on, my sleep patterns have returned to what they were before surgery.  I am still feeling tired if I over exert myself, but you do need to bear in mind that you have undergone major surgery (the "damage" on the inside is much worse than that you can see on the outside- and that looks bad enough!) and not push yourself too much.


I found it uncomfortable to sit down for several weeks after my operation and I loaded up all the chairs I usually sat in with comfy and well-padded cushions. That made a big difference and 5 weeks on from my operation I have no uncomfortable  derriere problems at all.


 


Ivan

User
Posted 27 Jan 2022 at 09:17

I had my prostate removed on 21/12/21 so can empathise with what you experienced and what you are presently experiencing. You seem to have got through the surgery well and you will, if my experience is anything to go by, feel much better once the catheter is removed. It took me 4 days to have an evacuation and boy did that feel good when I did. I was  given Lactulose (40 ml a day) and  senna tablets (2 a day) to take and along with drinking  around 3 litres of water a day found that that worked for me.


If you haven't already bought some incontinence pads and pants I would certainly recommend that you do so in readiness for when you have your catheter removed. I was totally incontinent for around 6 hours after my catheter was removed, though that did improve to around 70% continent after that initial period. Just over 5 weeks on from my operation and just over 4 weeks on from the removal of my catheter, I am now around 90% continent.


 


All the best for the weeks ahead


 


Ivan   

User
Posted 27 Jan 2022 at 10:34

Steve,  there is a professor that has operated on a few of the members on here. He  gives an explanation that the abdominal pain is more to do with eating etc rather than the gas used to inflate the abdominal area. 


I have had around 12 trial without catheter sessions (TWOC) and never failed one. I made sure I was well hydrated before I got to the hospital, better to leak than have a catheter reinserted.The removal is often described as wierd but mine has not been painful. In the unlikely event of the catheter getting stuck on the way out ask for a urologist to be called.   


Not sure why the catheter means you can't sleep on your side. Have you got the right straps and support for it ?


After the TWOCs and for the car journey home, I usually had a towel and waterproof cover for the car seat, although I leaked into a pad I never leaked enough to wet the seat. You could have a urine bottle just in case but I found try to pee into a bottle sat in a car seat nigh on impossible.


Take it easy but keep mobile.


Thanks Chris


 

User
Posted 27 Jan 2022 at 15:43

Hi Steve,


I had my RALP in November and catheter removed 11 days after the op. It was painless, but watch out for this.........
Once the catheter was removed, the nurse gave me a pad and told me to go away and drink at least a litre of water and then when I felt my bladder was full, urinate into a cardboard bottle (does that have a proper description?) and place it into a bag for weighing. In that way, she would see how much I had passed. Because they won't let you go unless they are sure you are not retaining.
I drank the litre and didn't feel full. So I drank another litre and still didn't feel full. 
Then I felt warm and wet down below. took a look and saw that I was walking around the hospital with a rather large wet patch that showed badly even with my dark trousers.  And I was wet down to my socks. It was lucky I had been pre-warned and had bought spare pads. trousers, underwear and socks. I needed them all.
The second problem was getting changed without dribbling into my dry clothes or onto the floor. It took me a full 20 minutes to work it out and the nurse thought that I had done a runner. If only.
I know that not everyone has the problem to this extent, or even at all and you may get lucky, but the moral of my story is if you don't feel full after drinking the first bottle, take a good look down below before starting another, because you do not feel it happening.


Good luck!!


Peter


 


 

User
Posted 27 Jan 2022 at 16:06
Good luck with it Steve. Glad the op went well.
User
Posted 27 Jan 2022 at 20:50

Glad to hear the RALP went well. Hope your recovery continues to go well. Keep us posted.

User
Posted 27 Jan 2022 at 20:55
We're all different. My problem was not leaking, but retention. I drank the first litre and peed fine, but apparently not enough came out. So I had to have a second and I just got over the line.

But going home we had to stop at a supermarket so I could go and have a pee - like Chris said, trying to pee into that cardboard container in a car was not really an option. I only just made the toilet and then was peeing everywhere - the floodgates opened. If I had my time again, I would have hung around the hospital another 30 minutes and had another pee before leaving, and planned a pee stop on the way back.
User
Posted 28 Jan 2022 at 00:55

Great to hear the op went well Steve. Wishing you well, and a full and speedy recovery 👍🏽

User
Posted 04 Feb 2022 at 09:07
Probably best to read the threads on here there are many on that subject!
User
Posted 04 Feb 2022 at 10:53

Steve, the leaking from the penis or bypassing can be caused by a build up of crap in the catheter. A slight shift in catheter position can also increase bypassing. For various reasons I have had a catheter on numerous occasions and always bypass, more frequently when passing a motion.


For the catheter removal, I always made sure I was well hydrated before getting to the hospital. Little and often water intake worked best for me, my nurse at the trial without catheter said don't drink all the water in one go. Don't hold back on the water in the hope you may not leak as much, better to leak than have another catheter fitted because you cannot pass the required amount of urine. I have done 12 twocs and never failed. Remember to relax and take your time.


I always put a waterproof cover and towel on  the seat just in case. I did leak quite a bit on the journey home after my RARP. You could get a urine bottle but peeing in a bottle whilst seated is not easy. It did have a urine bottle in my car after I regained my continence for emergencies.


Standing and getting in and out of the car made me leak. Four days after the catheter removal I was 99 percent dry, you may do better.


Hope all goes well.


Thanks Chris

Edited by member 04 Feb 2022 at 11:05  | Reason: Not specified

User
Posted 04 Feb 2022 at 16:58

Hi Steve, when I had my catheter removed ( painless and quick process ) the hospital monitored how much I drank ( 400 ml per hour for 3 hours ) and measured the urine output to make sure all was working as it should and that there was no issues of retention. I can recommend Tena level 2 pads, which I still require 11 weeks post TWOC. 


I take 50mg Sildenafil each week which I have found it is helping in restoring partial erections at this time, and improving over the weeks. Need to get yourself "into the mood" an hour or so after taking it!!


Take care, it is still early days.


P.

User
Posted 10 Mar 2022 at 14:39

Yes, a PSA reading of less than 0.01 is great news and let's hope that the histology on your diced and sliced prostate confirms the original scoring.


 


I found that my incontinence got better almost all of a sudden after about 5/6 weeks and like you was originally dry at night but would leak quite a bit when I was out walking. Then, that stopped and I have been 99.99% continent ever since. Lifting something quite heavy makes me leak just a little.


ED wise, probably because all my nerve bundles were spared on the left hand side and most on the right hand side I am getting semi-hard and that might also because I am taking 5 mg of Tadalafil a day ( I was told that to get rock-hard I would need to take a 20 mg dose).


 


Good luck with your meeting with the urologist.


 


Ivan

User
Posted 10 Mar 2022 at 14:59

Originally Posted by: Online Community Member


“ PSA blood result has come back >0.01 which is great news!” 





Do you mean <0.01? I hope so.


Cheers,


Chris


 

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User
Posted 27 Jan 2022 at 09:17

I had my prostate removed on 21/12/21 so can empathise with what you experienced and what you are presently experiencing. You seem to have got through the surgery well and you will, if my experience is anything to go by, feel much better once the catheter is removed. It took me 4 days to have an evacuation and boy did that feel good when I did. I was  given Lactulose (40 ml a day) and  senna tablets (2 a day) to take and along with drinking  around 3 litres of water a day found that that worked for me.


If you haven't already bought some incontinence pads and pants I would certainly recommend that you do so in readiness for when you have your catheter removed. I was totally incontinent for around 6 hours after my catheter was removed, though that did improve to around 70% continent after that initial period. Just over 5 weeks on from my operation and just over 4 weeks on from the removal of my catheter, I am now around 90% continent.


 


All the best for the weeks ahead


 


Ivan   

User
Posted 27 Jan 2022 at 10:34

Steve,  there is a professor that has operated on a few of the members on here. He  gives an explanation that the abdominal pain is more to do with eating etc rather than the gas used to inflate the abdominal area. 


I have had around 12 trial without catheter sessions (TWOC) and never failed one. I made sure I was well hydrated before I got to the hospital, better to leak than have a catheter reinserted.The removal is often described as wierd but mine has not been painful. In the unlikely event of the catheter getting stuck on the way out ask for a urologist to be called.   


Not sure why the catheter means you can't sleep on your side. Have you got the right straps and support for it ?


After the TWOCs and for the car journey home, I usually had a towel and waterproof cover for the car seat, although I leaked into a pad I never leaked enough to wet the seat. You could have a urine bottle just in case but I found try to pee into a bottle sat in a car seat nigh on impossible.


Take it easy but keep mobile.


Thanks Chris


 

User
Posted 27 Jan 2022 at 11:11

Thanks Chris. Yes have the strap that holds onto the thigh and then bag on the calf. 


think it is more the fact that i might lean on it and squeeze it all out. Just need to find the right way to sleep really. 


will make sure I keep up with the litres of water to get through this. Been told to increase the laxative sachets today to 8 in 1 litre to help pass anything so this will be fun 

User
Posted 27 Jan 2022 at 11:16

Steve do you connect a night bag to the leg bag spout ? I put a thigh strap around my ankle and attach the night bag tube to the strap to save any strain on the joint. 


Thanks Chris

User
Posted 27 Jan 2022 at 15:43

Hi Steve,


I had my RALP in November and catheter removed 11 days after the op. It was painless, but watch out for this.........
Once the catheter was removed, the nurse gave me a pad and told me to go away and drink at least a litre of water and then when I felt my bladder was full, urinate into a cardboard bottle (does that have a proper description?) and place it into a bag for weighing. In that way, she would see how much I had passed. Because they won't let you go unless they are sure you are not retaining.
I drank the litre and didn't feel full. So I drank another litre and still didn't feel full. 
Then I felt warm and wet down below. took a look and saw that I was walking around the hospital with a rather large wet patch that showed badly even with my dark trousers.  And I was wet down to my socks. It was lucky I had been pre-warned and had bought spare pads. trousers, underwear and socks. I needed them all.
The second problem was getting changed without dribbling into my dry clothes or onto the floor. It took me a full 20 minutes to work it out and the nurse thought that I had done a runner. If only.
I know that not everyone has the problem to this extent, or even at all and you may get lucky, but the moral of my story is if you don't feel full after drinking the first bottle, take a good look down below before starting another, because you do not feel it happening.


Good luck!!


Peter


 


 

User
Posted 27 Jan 2022 at 16:06
Good luck with it Steve. Glad the op went well.
User
Posted 27 Jan 2022 at 20:50

Glad to hear the RALP went well. Hope your recovery continues to go well. Keep us posted.

User
Posted 27 Jan 2022 at 20:55
We're all different. My problem was not leaking, but retention. I drank the first litre and peed fine, but apparently not enough came out. So I had to have a second and I just got over the line.

But going home we had to stop at a supermarket so I could go and have a pee - like Chris said, trying to pee into that cardboard container in a car was not really an option. I only just made the toilet and then was peeing everywhere - the floodgates opened. If I had my time again, I would have hung around the hospital another 30 minutes and had another pee before leaving, and planned a pee stop on the way back.
User
Posted 28 Jan 2022 at 00:55

Great to hear the op went well Steve. Wishing you well, and a full and speedy recovery 👍🏽

User
Posted 01 Feb 2022 at 21:56

Just an update - 


recovery is going ok so far. Poo’in normally thank goodness and staples come out this Thursday which is ok for me as it is itching like mad now. 


catheter is booked for Monday 7th to come out which can’t come quick enough. No pain at all but it is just an inconvenience really. Have dribbled quite a bit when walking and on the loo and nurses said it is completely normal. They did advise me to put on some Tena pads / pants and that has helped. 


sleep wise not so great still. Wake at silly o’clock times like 4am and then struggle to get back off but it will pass one day. 

next hurdle is first PSA and margin results which have been told today that it will be in 6 weeks time. 


feeling positive and still need to remember that I have had a major op and not push myself too far. Managed to walk a mile a day now and it seems to be the max so far and then get tired. 


the worst part after the RALP is my arse is sore when I sit down. Managed to sit on a pillow which helps but feels like my arse/scrotum is swollen and I have to keep getting up, wander around and then sit back down again. Again, nurses said this is totally normal. 


 


 

User
Posted 02 Feb 2022 at 09:25

One thing to bear in mind when you have your catheter removed is that you are likely, based on my own experience, to leak quite a bit for a number of hours after the catheter is removed. I was totally incontinent for around 6 hours after removal and changed my incontinence pants several times. So, make sure you take a few pairs of incontinence pants and pads with you to the hospital ( I only took one pair of pants and that was not enough) and that you have a good supply at home. After 6 hours or so I regained around 80 % continence (mostly dry at night and when sitting down) and  just over 4 weeks on from the removal of my catheter am now around 90% continent.


 


Sleep wise, I was waking at different times during the night when I had the catheter in and this continued for about a week after it was removed. Four weeks on, my sleep patterns have returned to what they were before surgery.  I am still feeling tired if I over exert myself, but you do need to bear in mind that you have undergone major surgery (the "damage" on the inside is much worse than that you can see on the outside- and that looks bad enough!) and not push yourself too much.


I found it uncomfortable to sit down for several weeks after my operation and I loaded up all the chairs I usually sat in with comfy and well-padded cushions. That made a big difference and 5 weeks on from my operation I have no uncomfortable  derriere problems at all.


 


Ivan

User
Posted 04 Feb 2022 at 08:49

Update - 


staples now removed! Feels better with them out now and feels like another hurdle overcome. 


for anyone worrying about having staples out, please don’t! It feels like a tiny scratch and very quick and easy. Think mine was approx 20 staples. 


So now on to Monday for the catheter to come out. Not sure if anyone else was like it but am fed up of it now and is a pain. I keep leaking from the end of my penis throughout the day and it is annoying but support team say this is completely normal especially towards the end of the 2 weeks. Occasionally seeing blood in the urine when having a poo and again is all normal. 


roll on Monday! Been told I am going to be prescribed Sildenafil on Monday as well to start taking. This is one of the things that worry me with ED. What’s peoples experience on this? 

User
Posted 04 Feb 2022 at 09:07
Probably best to read the threads on here there are many on that subject!
User
Posted 04 Feb 2022 at 10:53

Steve, the leaking from the penis or bypassing can be caused by a build up of crap in the catheter. A slight shift in catheter position can also increase bypassing. For various reasons I have had a catheter on numerous occasions and always bypass, more frequently when passing a motion.


For the catheter removal, I always made sure I was well hydrated before getting to the hospital. Little and often water intake worked best for me, my nurse at the trial without catheter said don't drink all the water in one go. Don't hold back on the water in the hope you may not leak as much, better to leak than have another catheter fitted because you cannot pass the required amount of urine. I have done 12 twocs and never failed. Remember to relax and take your time.


I always put a waterproof cover and towel on  the seat just in case. I did leak quite a bit on the journey home after my RARP. You could get a urine bottle but peeing in a bottle whilst seated is not easy. It did have a urine bottle in my car after I regained my continence for emergencies.


Standing and getting in and out of the car made me leak. Four days after the catheter removal I was 99 percent dry, you may do better.


Hope all goes well.


Thanks Chris

Edited by member 04 Feb 2022 at 11:05  | Reason: Not specified

User
Posted 04 Feb 2022 at 16:58

Hi Steve, when I had my catheter removed ( painless and quick process ) the hospital monitored how much I drank ( 400 ml per hour for 3 hours ) and measured the urine output to make sure all was working as it should and that there was no issues of retention. I can recommend Tena level 2 pads, which I still require 11 weeks post TWOC. 


I take 50mg Sildenafil each week which I have found it is helping in restoring partial erections at this time, and improving over the weeks. Need to get yourself "into the mood" an hour or so after taking it!!


Take care, it is still early days.


P.

User
Posted 07 Feb 2022 at 17:51

Latest update - 


today I had my catheter removed which if anyone is worried about is painless. More of a slight weird feeling but no pain. So after 1 litre of water and a quick scan was allowed home after a couple of hours. 


So am happy to have the catheter removed but OMG it does come out fast so am thankful for all the comments and suggestions of pads and change of clothes, you need them for sure! 


I have changed quite a few times since being home so the only advice I can offer is keep lots of pads and some change of clothes handy as it leaks a lot in the first day. 


So now onto the next hurdle which is PSA test in 4 weeks and then 2 weeks later for margin results. So fingers crossed there. 


have also been given Tadalafil 5mg to take every day for 2 months starting today and pelvic floor exercises finally began again! 


 

User
Posted 10 Mar 2022 at 13:37

New update! 


I thought I would post an update on here and maybe start a new thread instead but I have just heard from my support nurse at the hospital regarding my 6 week post RALP and this is what she said -


“ PSA blood result has come back >0.01 which is great news!” 


So I have heard that all being well, the MDT meeting this Friday is hoping to discuss my results and histology so I should be seeing the urologist next week fingers crossed! 


it seems that there is a silver lining in all this and then can discuss histology.


On side note, incontinence is starting to settle down slowly, dry at night and dry until about 4pm ish which is good. I leak when I walk though after about 10 minutes so have another appt with continence clinic next week so will ask about this. 


ED wise, nothing at all is happening and not a twitch whatsoever. I know it is still early after 6 weeks post op so time will tell on that front! 

User
Posted 10 Mar 2022 at 14:39

Yes, a PSA reading of less than 0.01 is great news and let's hope that the histology on your diced and sliced prostate confirms the original scoring.


 


I found that my incontinence got better almost all of a sudden after about 5/6 weeks and like you was originally dry at night but would leak quite a bit when I was out walking. Then, that stopped and I have been 99.99% continent ever since. Lifting something quite heavy makes me leak just a little.


ED wise, probably because all my nerve bundles were spared on the left hand side and most on the right hand side I am getting semi-hard and that might also because I am taking 5 mg of Tadalafil a day ( I was told that to get rock-hard I would need to take a 20 mg dose).


 


Good luck with your meeting with the urologist.


 


Ivan

User
Posted 10 Mar 2022 at 14:59

Originally Posted by: Online Community Member


“ PSA blood result has come back >0.01 which is great news!” 





Do you mean <0.01? I hope so.


Cheers,


Chris


 

 
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