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RP December 16th 2019

User
Posted 20 Dec 2019 at 21:08

Thanks for the quick response guys. Post Catheter it is then.

User
Posted 26 Dec 2019 at 12:38

Looking Ahead 29th December 2019


Tomorrow is TWOC and staples removed. Had a very enjoyable Christmas mostly  watching the grandson playing and having a very enjoyable Christmas dinner and was surprised by my appetite. I am now feeling much better and getting stronger by the day and even managed an hour shopping with the wife this morning.


Depending upon how my TWOC goes tomorrow I am now wondering when I will be able to start walking and swimming again. At the moment I am suffering with chronic lower back pain and have done on and off for almost 15 years. Walking and swimming are the two forms of exercise which greatly alleviate my symptoms .I am now suffering more than usual due to time spent being inactive and understand it might be dependent on what happens when they remove the catheter. My main worry is not so much incontinence but rather chronic retention and therefore have to wear the Catheter again. I did try self catheterisation  last time they removed the catheter (fitted after biopsies due to water retention)but found it too painful perhaps due to water infection or as the prostate area was still very tender.As I am now feeling mush better and hopefully continue to do so but fear my back will continue to get weaker if I don,t start to get going soon. Any guidance will be much appreciated. best regards Dave


 


 


 


 


 


 


 


 

User
Posted 26 Dec 2019 at 13:06

Keep the liquids going avoiding too much caffeine. Alcohol for me causes drips as it’s a muscle relaxant. Ultimately should settle when stitches dissolve over time. Kegel exercises will help.


I have lower back issues as well. Found a gentle use of tens machine helped as it was killing me night before my trip into London for TWOC. Going forwards I used techniques shown by physio to manage it as gym is mostly off the radar for a few weeks. If you can I’d try and hook up with the urology team for recommendations/advice in respect of physiotherapist or Pilates. 

User
Posted 26 Dec 2019 at 13:20

I have tried Tens machine in the past but unfortunately does not work for me. I have tried just about everything in the past but again nothing other than swimming and walking are the only things that work. However I will do as you suggested and try and hook up with the physio team and see what they say. Cheers again for your input.


 


 

User
Posted 26 Dec 2019 at 13:25

Cheers Dave


yeah touch base with medical team


with me they encouraged me to start walking a 1-2km a day from day 2 after surgery. Just gentle and listening to your body etc. Swimming I suspect would be out of bounds until those wounds heal I guess five weeks. It’s all about protecting those incisions from hernia as well as internal cuts healing etc. Hope you find resolution to the back issues.

User
Posted 26 Dec 2019 at 14:18

Originally Posted by: Online Community Member


Cheers Dave


yeah touch base with medical team


with me they encouraged me to start walking a 1-2km a day from day 2 after surgery. Just gentle and listening to your body etc. Swimming I suspect would be out of bounds until those wounds heal I guess five weeks. It’s all about protecting those incisions from hernia as well as internal cuts healing etc. Hope you find resolution to the back issues.


I am kind of thinking that way myself regarding the swimming and will probably leave it until the socks are off + another week. Once the catheter is out tomorrow will start walking again. Whenever my back is good I frequently do anywhere up to 10 miles walking .Hopefully I will get back up to that one day.

User
Posted 26 Dec 2019 at 14:48

Hubby Was told gentle  walking 1 - 2 K after catheter removal. No swimming or yoga for him yet at 8 weeks. Will check with Surgeon in 4 weeks.

User
Posted 26 Dec 2019 at 17:33

Originally Posted by: Online Community Member


Hubby Was told gentle  walking 1 - 2 K after catheter removal. No swimming or yoga for him yet at 8 weeks. Will check with Surgeon in 4 weeks.


Cheers for that. This has given me a better idea what to aim for. At least until I get to speak to the surgeon or nurse.

User
Posted 26 Dec 2019 at 17:45

Check at your 6 week check. We were told no cardio yet at that appt. 

User
Posted 26 Dec 2019 at 17:46

Also no lifting heavy weights for 12 week.

User
Posted 26 Dec 2019 at 17:59

I postponed my powerlifting competition πŸ€”πŸ˜€

User
Posted 27 Dec 2019 at 12:03

Sitting here in the Urology department waiting room after the catheter was removed. What a breeze. Clips removed which was also painless. Sitting here after 6 cups of water and peeing into a container. I think more water was in my nappy. Haha. Good news bladder was almost Mt compaired to last time which was 450ml. So hopefully chronic retention gone? Another try again after drinking more water and I can go home. Good job I brought a good supply of nappies /pads. Thanks again guys for getting me prepared.

User
Posted 27 Dec 2019 at 13:31

Great news. Yeah nappy and black trousers help lots πŸ˜€


My train back had no operational toilets until I explained my predicament to the guard. I broke into a sweat during the 90min journey but managed to get into a loo cubicle. Interestingly I was fully continent right after catheter removal but then started to drip day 2...I think due to inflammation and swelling coming out after 15 days with the pipe in. The good news is things have slowly improved over time. Pretty much dry all day with maybe the odd drip. Nights have been mostly fine. Try to reduce water consumption in the evening. I slow it right down after day 8/9pm I was necking it the other week after a beer right to bed time and got caught short an hour after going to bed. Thankfully pad captured it and quickly showered down and took it on the chin for not following the instructions given :-)

User
Posted 27 Dec 2019 at 13:35

back home after another 45 mins of drinking more cups of water and changing pads. . really glad I did not need to go to urology department to have the catheter put back due to cronic water retention. Hopefully that [rpblem is now sorted. This was one of the reasons I went down the surgery route. Now to start the pelvic floor exercises . Might try the app thats been recommended on here to remind me. Onwards and  upwards. feeling pretty good at the mo. Waiting fpr the next appointment  in about 4 weeks on monday to find out if they got all the cancer, although I have been told I might get a call before then. best regards Dave and your comments are appreciated


 


 


 


 

User
Posted 27 Dec 2019 at 13:44

Originally Posted by: Online Community Member


Great news. Yeah nappy and black trousers help lots πŸ˜€


My train back had no operational toilets until I explained my predicament to the guard. I broke into a sweat during the 90min journey but managed to get into a loo cubicle. Interestingly I was fully continent right after catheter removal but then started to drip day 2...I think due to inflammation and swelling coming out after 15 days with the pipe in. The good news is things have slowly improved over time. Pretty much dry all day with maybe the odd drip. Nights have been mostly fine. Try to reduce water consumption in the evening. I slow it right down after day 8/9pm I was necking it the other week after a beer right to bed time and got caught short an hour after going to bed. Thankfully pad captured it and quickly showered down and took it on the chin for not following the instructions given :-)


Good to hear you were continent almost immediately. I am totally the oppisite  although I must admit drinking 6 cups of water in an hour instead of 24 hours is a bit much. HaHa. I will probably stop drinking about 7 tonight and hopefully get through the night without incident wearing a fill knicker pad which makes me feel a bit more confident if that makes sense. not sure if they are any better but definately  more expensive

Edited by member 27 Dec 2019 at 13:47  | Reason: Not specified

User
Posted 27 Dec 2019 at 14:06

Yes I used a full nappy for a few nights too for reassurance. I stuffed mine with a tena levels three and some kitchen paper for belt a braces. A few nights in just went to tena 3 and now just use tena 2 but no issues at all at night. Kegel helping lots for daytime leaks. 

User
Posted 27 Dec 2019 at 15:59

Wow pads are only lasting about 30 mins to about an hour. This could work out expensive. I give my doctors a ring to see if I can get them on prescription. No way Hosay. Tonight should be interesting. Now wearing Nickers and a night pad together hoping it lasts a bit longer. I might have to stop tea altogether. I think it is easing a bit as all that water I drank earlier has worked its way through.

User
Posted 27 Dec 2019 at 16:30

Good to hear your update Dave. My TWOC is Monday, so your experience is really helpful! Thanks.

User
Posted 27 Dec 2019 at 16:49

Hi BHP


That sounds normal sorry to say. Water may be less of an irritant.  

User
Posted 27 Dec 2019 at 17:41

Dave


You can get an online next day delivery from Boots or The Incontenence shop which might save you some money. 

User
Posted 27 Dec 2019 at 17:43

Originally Posted by: Online Community Member


Good to hear your update Dave. My TWOC is Monday, so your experience is really helpful! Thanks.


Keep us posted as it will be interesting to see how you get on too. Good to be able to compare notes haha

User
Posted 27 Dec 2019 at 17:47

Originally Posted by: Online Community Member


Dave


You can get an online next day delivery from Boots or The Incontenence shop which might save you some money. 


Thanks for that. Will try this out compare the prices.

User
Posted 27 Dec 2019 at 18:12

Would recommend just water for a few days. Caffeine and alcohol played havoc with me so totally backed off it :-/


I picked up tena 3 for about a £12 for three  packs from amazon. Also picked up tena 2 which have switched too now. What I do also I use a highly absorbing kitchen paper towel on inside like a sacrificial absorber plus I find easier to monitor without having to weigh the pads etc

User
Posted 27 Dec 2019 at 18:23

Techguy


Try wrapping the kitchen roll in a nappy liner, it will keep you dry and the tissue will not stick to you if wet. Sainsbury's sell nappy liners. If you have a small leak you dispose of the tissue and nappy liner.


Thanks Chris


 

User
Posted 27 Dec 2019 at 18:23

Originally Posted by: Online Community Member


Would recommend just water for a few days. Caffeine and alcohol played havoc with me so totally backed off it :-/


I picked up tena 3 for about a £12 for three  packs from amazon. Also picked up tena 2 which have switched too now. What I do also I use a highly absorbing kitchen paper towel on inside like a sacrificial absorber plus I find easier to monitor without having to weigh the pads etc


Sounds like another way to save money


Cheers.

User
Posted 27 Dec 2019 at 18:29

Cheers for heads up Chris. Should be ok now as only 2-4 drips per day now. Very much 3 steps forward and 2 back but gradually getting there.


 

User
Posted 27 Dec 2019 at 18:48

Agree with Techguy and Pete. Hubby uses Tena 3 boots own brand. 

Edited by member 27 Dec 2019 at 19:32  | Reason: Not specified

User
Posted 27 Dec 2019 at 19:16

Thanks for the advice. Just ordered the Tena 3 from Amazon - be here tommorow. My OH said they wouldn't give me something at the TWOC - but I suspect that these will be limited in number and somewhat inferior to Tena? Have been on light squashes and a morning tea since the OP. Had to do a caffeine detox as well!

User
Posted 27 Dec 2019 at 19:21

It's a tough call between drinking enough to keep your stools soft and not drinking so much you're leaking all the time. 


I stopped all alcohol for 6 months from Oct 16 to April 17 as well.  It wasn't as bad as I imagined.


Also I stopped drinking around 7pm every day although I never leaked at night.


At least I don't think I leaked at night but I wore Boots fairly thick pads for 5 months day and night.  In winter they're quite warm as well.


Here's a standard piece I found on a website:


'at first you're dry in bed and deteriorate through the day.  Over time the deterioration slows so you might be dry in the morning but wet in the afternoon and then dry all day, or at least relatively dry.  Most say 3 - 6 months for dry, but not everyone.'


 


Here's a personal quote, 2017, from my own website which is linked on my profile:



'With my level of stress incontinence I find the best incontinence pads 
are Boots medium super (marked with 5 drops out of 8).
They cost less than other makes that have less capacity so you might as well use them.
They are a bit bigger but aren't noticeable and they don't let you down. In winter they're warm as well.
I've used Medium 4 drops and found I had to change it earlier whereas the 5 drop one's last all day.
The very small ones are only good for in the house or overnight when I'm dry anyway.


Another trick is to make sure you pull the pad up after going to the loo.  I once didn't and got a damp spot down my leg.


Pad fullness is detected by weight. It can seem dry but if it's heavy it's near full.  You need to wear briefs and not boxers with a pad.


Also don't buy too many at one time.  My continence suddenly seemed a lot better but I've got 30 big pads left and could manage with a very small pad now, early May 2017.  Shame that once every few days there is an unexpected stress leak.'


 

Edited by member 27 Dec 2019 at 19:22  | Reason: Not specified

User
Posted 27 Dec 2019 at 19:28

They will be light pad so take your own supplies + towel for the car ride home. 


 

User
Posted 27 Dec 2019 at 19:29

I re-read my surgeons tech notes over the days/weeks following surgery. The Prof says evening can be leaky as your body and muscles get tired and tend to relax. He also said to reduce liquids after 7pm. Plus leaking common until the stitches start to break down (week 6) around the anastomosis/rebuilt bladder connection.


ive found kegel pelvic floor exercises help particularly with stress incontinence. I’ve learnt to hold when I cough/sneeze/pass_wind. 


definitely improvement over time.


Incidentally...I found kegels a lot easier to do for a few days learning while laying flat in bed.

Edited by member 27 Dec 2019 at 19:36  | Reason: Not specified

User
Posted 27 Dec 2019 at 19:33

Oddly now I get the sensation of leaking but no leakage. I guess it’s part of the journey as the brain relearns the new set up downstairs and reconfigures the neural pathways as everything heals etc Dry is dry...I’ll take that :-)

User
Posted 27 Dec 2019 at 20:32
Our urologist described it as like a sieve - until the new join in the urethra heals, fluid is going to drip through the holes. He said no amount of kegels will stop a sieve from leaking - once the join is healed, it is all about the brain learning the new signals. Stress incontinence can be improved by pelvic floor exercises, but not mechanical damage / confused nerve signals.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Dec 2019 at 22:01

Your joint should have been tested and proven to be watertight. Leakage of urine into the pelvic cavity should be avoided and can be fatal. Your urethra may leak like a sieve but from one end to the other but not from the joint.


Thanks Chris


 

User
Posted 27 Dec 2019 at 22:06

Pretty sure it’s one end to the other. No alarm bells thus far in terms of the anastomosis plus they were cautious leaving the catheter in for 15 days. Ultrasound scan was done during the few hours of TWOC.

User
Posted 27 Dec 2019 at 23:42
I don’t think Mr P was being literal when he told us that; he was just explaining why PFEs are irrelevant in the first few weeks. The bladder will leak like a sieve to begin with - it is a simile.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Dec 2019 at 07:01

Originally Posted by: Online Community Member


Thanks for the advice. Just ordered the Tena 3 from Amazon - be here tommorow. My OH said they wouldn't give me something at the TWOC - but I suspect that these will be limited in number and somewhat inferior to Tena? Have been on light squashes and a morning tea since the OP. Had to do a caffeine detox as well!


I asked for some pads at the TWOC and they gave me a box of Tena 3.So Don, t forget to ask. You might be in luck.

User
Posted 28 Dec 2019 at 07:16

First night after TWOC


Stopped drinking anything at 7pm. Used incontinence knickers with two night pads. At first I thought this might be overkill but the amount of water leaking after the TWOC I thought better to be safe than sorry.


Only got up once during the night but was very tired going to bed as it was a long day yesterday.


This morning only one of the night pads were about 50% shot so have removed the dry night pad to use again.


Just found out of my beloved I have been drinking decaffeinated tea for years. Haha. I might try a cup this morning. Fingers crossed. Feeling a bit tender in the pelvic area, possibly due to the pelvic floor exercises. All in all feeling pretty pleased and looking forward to what the day brings although nothing major planned.


 

Edited by member 28 Dec 2019 at 07:18  | Reason: Not specified

User
Posted 28 Dec 2019 at 07:33

Sounds like great progress. Just had my first 24hrs dry. Had my catheter removed on the 12th December so pretty happy this far. Gone down to a tena two with no kitchen towel stuffed inside :-) 


Water works feel a lot less inflamed. Still some discomfort when bladder full and in pelvic area but I expect that for some time to come given what took place. Things can only get better :-)


enjoy your Saturday!

User
Posted 28 Dec 2019 at 07:48

Tech guy. Sounds like you have done fantastically well considering a lot of people can take 6 months to get to that stage. Unfortunately I take pain killers for chronic back pain and do reduce sensetivety, I do wonder what effect this may have on my recovery.

User
Posted 28 Dec 2019 at 08:48

Hi Dave


I will admit during the earley stages after catheter removal I did have moments of concern. But kept going back and re-Reading the profs notes and time and time again the message was ‘time’. Seems this part is true so as I was advised by another chap who was a month ahead of me on the journey.....’just relax and be patient’ :-)


I have a pretty back lower back too thanks to Windsurfing and a faulty mast foot up haul line back in 2003. If your water works we’re fine before the prostate issues then fingers crossed should be where you can expect to get to once things have settled. Albeit with the odd stress related leak. 


Give it a few weeks. Apparently biggest progress curve is the six week mark when stitches start to dissolve then should also see slow improvement over the year as scar tissue settles.


No regrets as this was the best path and got the tumour out. Fingers crossed no cells went on a grand tour or strayed during biopsy/surgery.


Certainly feel a lot more relaxed this side of surgery that’s for sure :-)

User
Posted 28 Dec 2019 at 10:21

Thanks for input and it helps to know that people have been successful with the surgery option. Looking for to the 6 week mark.

User
Posted 30 Dec 2019 at 08:39

I have just been reading past posts from people who have had similar treatments. Someone mentioned using a bag with a sheath when leaving the house and walking anywhere. Just wondered why most people Don, t seem to use these and prefer pads/nappies instead. I am currently using around 4 nappies + 4 night pads per day. This could work out quite expensive. Would using the sheath and bag not be a cheaper option. Is this kind of thing supplied by the NHS. I am thinking of giving the Incontenence Assessment a call this morning and see what they can do to help.

User
Posted 30 Dec 2019 at 09:13
Good luck with that; in our area you don’t get any help with pads etc until you have been incontinent for 6 months.

The sheath is called Conveen. It is not ideal for a man to have one so soon after surgery and many urologists would be very unhappy for their patients to have them; the thinking is that it makes you lazy and impedes the brain from relearning the bladder control needed. It is also difficult to fit if your penis is very shrunken post surgery. Conveen is a good solution for some men who have been left with longer term incontinence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2019 at 09:38

Originally Posted by: Online Community Member
Wow pads are only lasting about 30 mins to about an hour. This could work out expensive. I give my doctors a ring to see if I can get them on prescription. No way Hosay.


That sounds wrong. However, you may need to contact your local continence service. We had a talk from the local one at the Reading Prostate Cancer Support Group, and they said you can refer yourself - no need to go through GP. They do the prescriptions, same day - much faster than GPs, and deliver very quickly. Some members in the audience who use them said they were excellent.

User
Posted 30 Dec 2019 at 10:33

Originally Posted by: Online Community Member
Good luck with that; in our area you don’t get any help with pads etc until you have been incontinent for 6 months.

The sheath is called Conveen. It is not ideal for a man to have one so soon after surgery and many urologists would be very unhappy for their patients to have them; the thinking is that it makes you lazy and impedes the brain from relearning the bladder control needed. It is also difficult to fit if your penis is very shrunken post surgery. Conveen is a good solution for some men who have been left with longer term incontinence.
Thanks for clearing that up for me. The Incontenence assessment place is closed until after the holiday anyway


Just bought some Boots own brand of pants which seem the most reasonable so will try these out and compare them with Tena which are much more expensive

User
Posted 30 Dec 2019 at 15:16
Keep an eye on the supermarkets; most do regular 'buy one get one free' offers on Tena.

It may seem obvious but you are buying the men's pads and not the women's, aren't you?

Andy, like everything else it is a postcode lottery. Leeds CCG does not allow GPs to prescribe pads, once you have been incontinent for 6 months you can get free pads from the district nursing team. Similarly, in Leeds there are no district nurse visits post-OP :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2019 at 16:03

Originally Posted by: Online Community Member
Keep an eye on the supermarkets; most do regular 'buy one get one free' offers on Tena.

It may seem obvious but you are buying the men's pads and not the women's, aren't you?

Andy, like everything else it is a postcode lottery. Leeds CCG does not allow GPs to prescribe pads, once you have been incontinent for 6 months you can get free pads from the district nursing team. Similarly, in Leeds there are no district nurse visits post-OP :-(
Yes definately the mens pads. I didn,t know supermarkets sold them so will keep my eyes open.

User
Posted 30 Dec 2019 at 16:20

Sainsbury's and Asda sold the Tena mens grade 4 pull-ups that I used for a while during second half of RT and HDR brachytherapy. Often, one or other had a special offer. Finding where they were on the shelves was always an interesting challenge, and one of them listed the item on the receipt as female products (or some such).


They were overkill for me (I never let a bladder full go into one), but security was the main thing I was after - knowing I could pee into them if I had to. I did test one with half a litre of water and was very impressed. It soaked it up instantly, and you couldn't even wring a drop out.

User
Posted 30 Dec 2019 at 17:04

Like Andy I did a test on the Tenna 2 pads. I took my shoes, socks and trousers off, stood in the shower and let the bladder drain. The flow rate will make a difference, 170ml  at a slow flow may be contained, whereas 170ml at a fast flow will run down your leg. 


I do have a gripe with Tenna, they supposedly improved the range, ... by making the pads thinner.


Thanks Chris

 
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