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RP December 16th 2019

User
Posted 07 Dec 2019 at 14:30

hello everyone

Amazed how quick every thing has moved along having only had the prostrate biopsies taken on the 17th of November. 2 weeks later the results which were Gleason 3+4 . TNM grades T3a ,0,0. Although I had some reservations, after talking to the consultant I was totally convinced that surgery  was the correct decision .

For 5 days after my biopsy. Due to water retention in my bladder I had to wear a catheter and struggled with pain in the end of my penis and the first 3 days was hell until I changed the bag. Don,t know why but it did make a difference , even though I was always able to pass urine  it did make a difference. The relief when the catheter was removed  was huge and therefore it was sometime before I new something might be  amiss. I eventually I got my GP to send off a urine sample as I was in a lot of pain when peeing and my flow was a less than normal.

        I am currently sitting at home and approaching the last few days on antibiotics. The situation with my passing water and peeing has much improved and believe the antibiotics have done their thing. My only concern is the last couple of days, I have been constipated to point where it has made me feel quite poorly. Fortunately  I have manged to get things moving along with the use of macrogel ,Ispaghula and fibrogel. This makes me feel much better but still not 100%. I am currently thinking that I should be feeling better than I am and worry as I am only a week away from my Radical Prostratectomy .Don,t know why I am contsipated and still have some pain in my prostrate area although not servere. I am wondering if I should be telling someone or should I wait until the antibiotics coarse is completed. I really don,t want to cancel my operation as I am a full time carer for my wife and have arranged family to help out over the Christmas holidays. Any help advice would be appreciated. Best regards Dave. ps sorry about the spelling

          

 

 

 

 

 

 

 

User
Posted 19 Dec 2019 at 08:27

Good to hear you have that in hand.

Yeah avoid sitting on anything firm for. Week or so. Sitting on my home office chair would bring on a bleed in urine for me as the bladder would be irritated. Talking to a doctor friend he recommended Hard seats as much as possible as lots of swelling and bruising downstairs plus weak blood vessels trying to heal. ‘Deck chair mode’ of the sofa works well :-)

User
Posted 30 Dec 2019 at 19:23

Thanks guys. Lots of ideas to digest and consider but gradually getting my head around it . I now have a good selection of pants and pads. Hopefully by the time I need to order some more I will have a better idea what is more suitable for my needs and probably order a monthly supply at a time. I now have enough for about 2 weeks but don't expect to see much change in that time.

User
Posted 31 Dec 2019 at 13:56

Thanks everyone for the kind words. Back home now after seeing the doctor. Who did a urine test. Good news he says I have a water infection so back on the same antibiotics I was on after the biopsies treatment were taken. So hopefully nothing to worry about and eased my concerns although still quite painfull. Especially after changing my white socks.

Some good news after drinking loads of water and waiting an hour and a half. I really put the inconvenience pants through their paces. I am amazed at how much water they hold and believe I have been throughing them away to early.

User
Posted 01 Jan 2020 at 09:51

Originally Posted by: Online Community Member
Seems to me that you completely overdid things; going out 3 times in one day just two weeks after RP is bonkers.......You are at a significantly increased risk when you look at men here who have problems recovering their continence / erectile function they are often the ones who did too much in the early stages.

Maybe I would be enjoying rampant teenage erections again in what’s left of my penis if I hadn’t gone to the pub three times on my day of discharge from hospital, but somehow I doubt it.

I only did what I felt comfortable with post op, and I feel so grateful for my ten-day recuperation compared to the suffering and incontinence of others here.

Anyway, get well soon, and a Happy and Healthy New Year to all!

Cheers, John.

User
Posted 07 Dec 2019 at 14:30

hello everyone

Amazed how quick every thing has moved along having only had the prostrate biopsies taken on the 17th of November. 2 weeks later the results which were Gleason 3+4 . TNM grades T3a ,0,0. Although I had some reservations, after talking to the consultant I was totally convinced that surgery  was the correct decision .

For 5 days after my biopsy. Due to water retention in my bladder I had to wear a catheter and struggled with pain in the end of my penis and the first 3 days was hell until I changed the bag. Don,t know why but it did make a difference , even though I was always able to pass urine  it did make a difference. The relief when the catheter was removed  was huge and therefore it was sometime before I new something might be  amiss. I eventually I got my GP to send off a urine sample as I was in a lot of pain when peeing and my flow was a less than normal.

        I am currently sitting at home and approaching the last few days on antibiotics. The situation with my passing water and peeing has much improved and believe the antibiotics have done their thing. My only concern is the last couple of days, I have been constipated to point where it has made me feel quite poorly. Fortunately  I have manged to get things moving along with the use of macrogel ,Ispaghula and fibrogel. This makes me feel much better but still not 100%. I am currently thinking that I should be feeling better than I am and worry as I am only a week away from my Radical Prostratectomy .Don,t know why I am contsipated and still have some pain in my prostrate area although not servere. I am wondering if I should be telling someone or should I wait until the antibiotics coarse is completed. I really don,t want to cancel my operation as I am a full time carer for my wife and have arranged family to help out over the Christmas holidays. Any help advice would be appreciated. Best regards Dave. ps sorry about the spelling

          

 

 

 

 

 

 

 

User
Posted 10 Dec 2019 at 18:33

Hey Chris

ah thx top tip. I was drinking 2-3litres a day so got lazy when out or watching Netflix. 

I think I was fortunate going private as they seem to have quite a few options. Thankfully insurance picked up 99% of it.

TWOC Thursday morning so fingers crossed.

cheers

TG

 

User
Posted 11 Dec 2019 at 15:32

Update If I haven,t bored everyone to death by now.

Just received the all clear from my Urine sample. Now clear of infection. So now all systems go for Monday. I still have the issue of my stomach . Mainly gas building up which eventually gives me pain as it travels south . Once I have opened my Bowels, all is fine. I think its slowly improving with the tablets ( Buscopan used for Irritable Bowl Syndrome) I have never taken this before and never had this problem before. Is this something I need to tell the Urology department about  or do I wait until the big day and see if it clears? Just answered my own question and have decided to give the urology a ring and now waiting for the prostate nurse specialist to call me back.

Edited by member 11 Dec 2019 at 15:35  | Reason: Not specified

User
Posted 14 Dec 2019 at 22:00

Hi Dave,

You're relaxed, that's good. I hope everything goes well on Monday, and a smooth recovery in the days/weeks ahead.

Kev.

User
Posted 18 Dec 2019 at 22:18

Originally Posted by: Online Community Member

Dave

The catheter does not normally have a non return valve, the leg bag has a non return design. Some bags have a flap that closes, some have an arrangement of wafers that prevent backflow. When I started the journey nearly six years ago bags did not have backflow control, if you got a blockage you could lift the bag higher than the bladder and it would push the blockage back up the pipe. The current setup is called a closed system and once a component is removed it should be replaced with a new sterile item. On a catheter forum I belong to the night bag is a frequent topic of arguments.On some night bags the drain tap has to be broken to drain and is thrown away once used. On a night bag with a reusable tap my DN tells me in the home environment they can be reused for 7 days. If you have been given 10-14 night bags change it every day. A night bag is usually attached to the leg bag spout. 

I attach my night bag tube to my ankle with a leg strap or bag strap. I am a fairly restless sleeper and never have problems with pipes kinking. 

Thanks Chris

Cheers Chris I thought there is a non return valve somewhere couldn't remember where I have seen it. The night bags have a break off connection so I assume can only be used once. I only have enough for the week but have been assured more will be sent out to me. Hope so as I Don, t want to run out over the Xmas period.

 

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 18:23

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 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 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 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 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 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

User
Posted 31 Dec 2019 at 10:53
Seems to me that you completely overdid things; going out 3 times in one day just two weeks after RP is bonkers. You may not look like you have had major surgery on the outside but on the inside, a lot of damage has been done and it needs time for everything to knit together. They say that it takes 5000 calories a day to recover from abdominal surgery. You are at a significantly increased risk of hernia and when you look at men here who have problems recovering their continence / erectile function they are often the ones who did too much in the early stages. Give your body a rest.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jan 2020 at 15:51

Originally Posted by: Online Community Member

Be honest, did you enjoy rampant teenage sex when you were a teenager????? 🤣🤣🤣

Yes, with a lovely girl called Miss Palmer 😉

Cheers, John.

User
Posted 01 Jan 2020 at 23:08

Hi BHP

i noticed a little less but not as much as I expected. One of the first things I checked post op as expected a press stud. Post catheter removal already ‘test drove’ it with the good lady and she said it’s at 70%. Started on tadalafil daily. Prescribed was 5mg to flatten the curve of usually dose. I’m actually taking 2.5mg (snapped in half) a day. From day 5 I got semi erection even though some nerves were taken to increase margin. At the moment things exceed expectations and are penetratively useful. Not like the old days buts it’s still early days. 

I got a prescription for tadalafil but also bought privately as didn’t want to wait over Xmas period. 

TG

User
Posted 08 Jan 2020 at 16:26

Dave

Fantastic news! Massive positive step in the right direction. 

A good excuse to open a bottle of bubbly and have a nice meal 🙂

TG

User
Posted 08 Jan 2020 at 16:28

Originally Posted by: Online Community Member

Dave

Fantastic news! Massive positive step in the right direction. 

A good excuse to open a bottle of bubbly and have a nice meal 🙂

TG

Sound like a good idea

User
Posted 14 Jan 2020 at 21:43

So chuffed to read your good news!

I too had the result of my 6 week post op PSA reading today; 0.02 and confirmation of negative margin in the tissue removed with the prostate.  Next PSA blood test in 4 months when I hope the reading will be undetected.

User
Posted 21 Jan 2020 at 16:29

You are doing good for 6 weeks. One day at a time is progress. All the best in your recovery.

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User
Posted 07 Dec 2019 at 20:43

Check your temperature to see if raised, which might imply an infection.

Get another urine dip test done, and sample sent off for culture if it's not clear. Ask for an emergency GP appointment for this (justified because could impact pending operation).

It's not uncommon for antibiotics to fail to clear a UTI, unless you had a urine sample sent off for culturing and had to wait several days for the response to know which antibiotic to use.

User
Posted 08 Dec 2019 at 07:57

Originally Posted by: Online Community Member

Check your temperature to see if raised, which might imply an infection.

Get another urine dip test done, and sample sent off for culture if it's not clear. Ask for an emergency GP appointment for this (justified because could impact pending operation).

It's not uncommon for antibiotics to fail to clear a UTI, unless you had a urine sample sent off for culturing and had to wait several days for the response to know which antibiotic to use.

Thanks for the reply Andy.

                Although my temperature is fine I sure it will be a good idea to get another Urine test done just to be sure. I did however wait  5 days before previous results to come back and was told to get the correct antibiotics.

Just as a side note the problems also coincided with starting the pelvic floor exercise. and also have lower abdominal pain . I will try and get an emergency doctors appointment on Monday morning .As it seems the only logical way forward.

User
Posted 08 Dec 2019 at 13:43

Talk to the hospital urology dept. I had a small cold before op but so long as no lung involvement (productive cough, wheeziness) they were happy. I guess with potential STI you are on a broad spectrum antibiotic so might take a few days to get into system 


Thoughts for post surgery.

canturbury full length zip trousers have been a godsend when having to do anything in/out of the house with catheter bag. 

tena level 2 pads to stuff down pants 

tena bed pads although I haven’t leaked but good reassurance.

waterproof bed protector. I also bought hospital grade duvet and pillow which are waterproof but haven’t needed at all.

bucket for the overnight bag.

antispetic wipes.

general wipes so can wash and clean around pipes and generally downstairs,

surgical tape for statlock pipe retainers as the clips can come undone sometimes.

Traveljohn disposable urinal - really useful on train ride back for discretely emptying catheter bag without needing to use the facilities.

supportive pants - really useful for holding pipes and tena 2 pads in place and also if swollen testicles much more comfy.

pliers or a vice to hold end of clexane (self admin) as the caps can be hard to remove with two hands I found. Varies from unit to unit. 

stock up on plenty of ibuprofen and paracetamol.

Fruits, nuts, seeds, veg and dried fruit.

Anusol - can impact any minor haemorrhoids so will soothe this.

fybobgel, senna, lactulose syrup.

anybody suggest anything else?

User
Posted 08 Dec 2019 at 16:08
Thanks for the reply . Wish I new about this web site before I had the biopsy and had to wear a catheter for 5 days. As explained before it was really painful . Some great ideas so hopefully better prepared.

User
Posted 08 Dec 2019 at 16:28

Instilagel or hydrocaine if you are going to have a Urethral catheter and laxatives, both "may" be provided by your hospital. Ear plugs and eye mask for the night in hospital. You could try a do not disturb sign for night time but I don't think it will work.

A night bag "stand" to put in the bucket , putting the night bag in the bottom of a bucket or on the floor is not recommended. Again should/may be supplied by the hospital.

Hope all goes well.

Thanks Chris

User
Posted 08 Dec 2019 at 16:29

I guess you had a TRUS biopsy rather than template(TPM)?

i was lucky back in September as apart from bruising I had no blood in urine. But was warned it does happen depending on where the needle passes I guess.

i have a catheter in at the moment. Mostly ok apart from tip of penis where can get sore especially at night. I’m on day ten and mostly it’s fine but today after a 3k walk there is blood and bits of clots etc being flushed out. Key thing is drink plenty and if it appears to block change position Ie lay down/sideways of do a pronounced walk raising knees high for a bit to push the clot debris off the balloon end of catheter.

please shout if any questions as wonderful community here. That helped me a lot before my RARP and with some post op Q’s

Hope you feel better.

User
Posted 08 Dec 2019 at 16:43
I there a link on the website explaining the abbreviations?
User
Posted 08 Dec 2019 at 17:15

I don’t think so specifically but googling works.

TRUS - trans rectal ultrasound biopsy

TPM - Template mapping biopsy (via perineum)

RARP - robotic assisted radical prostatectomy 

hope that helps. 

User
Posted 08 Dec 2019 at 17:24
Cheers everyone for the great answers and links to Abbreviations hopefully some of them will stick haha
User
Posted 09 Dec 2019 at 09:01

Hi DaveBaxt

I hope you are feeling better and best wishes for your operation.  

TechGuy and I were in same hospital and had our RARP a day apart and I wanted to give you a morale boost by relaying my personal story here.

I had my RAPR removed at London Bridge.  Apart from shoulder pain - which many posts refer to and explain - some general tenderness around the wounds etc I had no significant bruising, swelling or other SE that are sometimes described.  I was able to stop all paracetamol and ibuprofen a week after the operation.  It turns out that RP was the right call as during the RP surgery the surgeon established that the cancer had spread outside the capsule - something that was not evident from MRI scan etc - and he took out some margin. I am now in the holding pattern of monitoring PSA results in 4 weeks time and quarterly thereafter to establish if in fact the surgeon got it all. Apparently Brachy would not have been an option if it had been established that my cancer had spread outside the capsule.

I had my catheter - I had the penile catheter rather than the supra pelvic one - removed last Thursday - 9 days after surgery - and this was a big relief.  I am delighted I am completely dry and in control.  No leaks or need for pads. 

And then last night was delighted to wake up during the night with a strong hard nocturnal erection!

So all good right now and I am feeling fine and strong.  I have been for walks on the beach, and been into town for Christmas market and even attended a Christmas drinks party on Saturday night.

Best wishes for your operation.

Grant

User
Posted 09 Dec 2019 at 09:30

Grant thanks for the reply which has boosted me. Great to hear you had no problems with the operation. Good luck for the future and hope you get the results you are waiting for.

User
Posted 09 Dec 2019 at 20:36

Update if anyone interested. Been to the Doctors after first being told there were no appointments available. I dialled 111 and they sorted out an appointment at the same Doctors although a different Doctor. How does that work?

Anyway turns out I have a tummy bug and have another lot of tablets to get through. I have also submitted another urine sample. Result after 48 hours. Fingers crossed I get the all clear and then all systems go for next Monday.

I am having a bit of a problem getting any Linocain or similar. I was unable to source any locally, so asked the doctor to subscribe some. He said I would get this from the hospital before I go home. Somehow I have my doubts.

User
Posted 09 Dec 2019 at 22:31

Happy to report my mojo appears to be returning too ever since a tingle the weekend following surgery albeit a bit painful with a catheter in. Other morning I was amazed but then tried and focus on something boring and dull so that it shrinks as catheter making it very sore.

I found with catheter just ensure you clip the Y section of the pipe correctly into the statlock. I screwed up first weekend after the op so bag kept slipping until the penny dropped causing some wear and tear to my chaps eye. I installed the spare statlock on other legs so alternate the bag on each leg night/day and appears to load balance the rubbing and soreness very well indeed.

When I spoke to the nurse about instagel and such like it was suggested Vaseline does a pretty similar job too but with a note of caution that anything introduced near the urethra can also introduce infection so best to go full sterile everything. 

I also had a problem with a statlok releasing all the time. Surgical tape across the clip sorted that.

Really impressed how fast recovery is thus far given just over ten days ago I had major surgery. But still mindful of following the Prof’s advice in respect of taking things easy for the prescribed time.

Good luck for next week and soon this will be all behind you. Hope you get the other issues resolved in the interim.

Look forward to the updates and to hear how you get on.

TG 

 

User
Posted 10 Dec 2019 at 06:59

TG Sounds like I had similar problems with my chaps eye after wearing a bag as you and just couldn't get comfortable. I couldn't even walk properly. Eventually I ended up changing the bag which gave some relief. One night the bag came off and soaked a brand new mattress. I think with all the messing about I am now having these problems. Hope I get them sorted before monday. I would just like to say thanks to everyone on this forum so far and any imput has been greatly appreciated. Best Regards Dave

User
Posted 10 Dec 2019 at 07:38

Dave and Techguy

Knowledge unfortunately sometimes comes from experience and like most post op guys a catheter was something new. 

Instilagel or hydrocaine contain anesthetic, antiseptic and lubricant so are far superior to vaseline. 

I have a permanent catheter and belong to a couple of forums, pipe disconnections are a common  experience. Personally I have only had about 3 disconnections in over a 1000 days of catheterisation. When I fit a new leg bag to the catheter I push it on as far as possible, check it a few hours later and the next day and it will usually go further in. With the night bag, I make sure the connection is tight and secure the night bag tube  pipe to the ankle.

Easy to say from some with a lot of catheter experience but I do  remember well being very gentle and tentative with the first post op catheter.

Hope your recovery continues.

Thanks Chris

 

User
Posted 10 Dec 2019 at 10:03

Originally Posted by: Online Community Member

Hi DaveBaxt

I hope you are feeling better and best wishes for your operation.  

TechGuy and I were in same hospital and had our RARP a day apart and I wanted to give you a morale boost by relaying my personal story here.

I had my RAPR removed at London Bridge.  Apart from shoulder pain - which many posts refer to and explain - some general tenderness around the wounds etc I had no significant bruising, swelling or other SE that are sometimes described.  I was able to stop all paracetamol and ibuprofen a week after the operation.  It turns out that RP was the right call as during the RP surgery the surgeon established that the cancer had spread outside the capsule - something that was not evident from MRI scan etc - and he took out some margin. I am now in the holding pattern of monitoring PSA results in 4 weeks time and quarterly thereafter to establish if in fact the surgeon got it all. Apparently Brachy would not have been an option if it had been established that my cancer had spread outside the capsule.

I had my catheter - I had the penile catheter rather than the supra pelvic one - removed last Thursday - 9 days after surgery - and this was a big relief.  I am delighted I am completely dry and in control.  No leaks or need for pads. 

And then last night was delighted to wake up during the night with a strong hard nocturnal erection!

So all good right now and I am feeling fine and strong.  I have been for walks on the beach, and been into town for Christmas market and even attended a Christmas drinks party on Saturday night.

Best wishes for your operation.

Grant

Which part is the Stalock, If this is the little white rubber clip that wraps around the pipe and has velcro attached which sticks to the strap around the leg. Basically attaches the pipe to the leg strap. I too needed to constantly re tighten this to ensure there was sufficient slack in the pipe. Bloody nuisance . I will therefore get some surgical tape and an extra leg strap too. I was only supplied with one last time.Hope this does the trick. Thanks again

 

User
Posted 10 Dec 2019 at 10:09

Originally Posted by: Online Community Member

Dave and Techguy

Knowledge unfortunately sometimes comes from experience and like most post op guys a catheter was something new. 

Instilagel or hydrocaine contain anesthetic, antiseptic and lubricant so are far superior to vaseline. 

I have a permanent catheter and belong to a couple of forums, pipe disconnections are a common  experience. Personally I have only had about 3 disconnections in over a 1000 days of catheterisation. When I fit a new leg bag to the catheter I push it on as far as possible, check it a few hours later and the next day and it will usually go further in. With the night bag, I make sure the connection is tight and secure the night bag tube  pipe to the ankle.

Easy to say from some with a lot of catheter experience but I do  remember well being very gentle and tentative with the first post op catheter.

Hope your recovery continues.

Thanks Chris

 

Nice one Chris and some really good tips. I am now feeling much more prepared. Thankyou

User
Posted 10 Dec 2019 at 10:37

This is the device. Place the Y section of catheter pipe with arrow pointing up. It holds the pipe in situ at the point of the split (urine/small inflator pipe) if that makes sense. https://www.bardcare.uk/consumers/products/view-products/catheter-securement/statlock/

how to install:

https://youtu.be/AsyA4Ijdalk

Edited by member 10 Dec 2019 at 10:40  | Reason: Not specified

User
Posted 10 Dec 2019 at 10:47

If you Google statlock you will see a picture of the fixation device, you will notice that the "Y" of the catheter is securely fixed in the clip and cannot be pulled out.

If you Google catheter strap, you will see the leg strap and notice that in 90 percent of the pictures the "Y" is not in the sub strap.   If the pipe is accidentally caught it will pull on the penis and urethra, it would take alot of force to pull it out, but will make your eyes water. If the Y is in the sub strap, there is no need to keep tightening the sub strap and the catheter is kept secure.

Just one thing to add not all catheters fit it the statlock device.

 

Thanks Chris

Edited by member 10 Dec 2019 at 10:50  | Reason: Not specified

User
Posted 10 Dec 2019 at 11:17

Originally Posted by: Online Community Member

This is the device. Place the Y section of catheter pipe with arrow pointing up. It holds the pipe in situ at the point of the split (urine/small inflator pipe) if that makes sense. https://www.bardcare.uk/consumers/products/view-products/catheter-securement/statlock/

how to install:

https://youtu.be/AsyA4Ijdalk

Looking at the Link. I was not supplied with this type of attachment. I will google the straps and see if I can find it. Here is a link to the one I got fitted.  Not very stable in my view. The strap has to be quite tight or slippage occurs. Also rubber comes loose and the catheter pipe slips through. however perhaps this type was fitted as it was only in for 5 days. Hopefully a better one will be used if the catheter will be in longer.fingers crossed

https://my.supplychain.nhs.uk/Catalogue/product/fub004

Edited by member 10 Dec 2019 at 11:55  | Reason: Not specified

User
Posted 10 Dec 2019 at 11:40

Quite a few pharmacies supply it. I would definitely recommend it and doesn’t move at all once bonded to your thigh. I also use a strap just to stabilise the bag laterally as the pouch tends to fall down my leg over time. #toptip shave area where you place the statlock or you’ll potentially get a waxing effect on removal :-)

User
Posted 10 Dec 2019 at 11:41

Guys

Not the strap I use but the main picture shows how I secure my catheter when using a strap.

https://images.app.goo.gl/sCTPsXhAbGMrMJFY9

Thanks Chris

Edited by member 10 Dec 2019 at 11:42  | Reason: Added main

User
Posted 10 Dec 2019 at 12:00

This was similar to what I was given but not the same so can,t comment if this would be any improvement on what I had.Thanks for your input.

User
Posted 10 Dec 2019 at 12:06

Originally Posted by: Online Community Member

Quite a few pharmacies supply it. I would definitely recommend it and doesn’t move at all once bonded to your thigh. I also use a strap just to stabilise the bag laterally as the pouch tends to fall down my leg over time. #toptip shave area where you place the statlock or you’ll potentially get a waxing effect on removal :-)

I will add one of these to my shopping list .Where do you recommened  it should bevfitted and do you allow for a loop  between the y and your penis.Would it be easier to closed the clip on the pipe before fitting to the leg to get the right position?

User
Posted 10 Dec 2019 at 12:16

Really easy to fit. Get the nurse to do first one  but basically top of front thigh ensuring plenty of flex from. The pipe to penis. When I sit on the toilet I release the clip temporarily and pull the pouch up to thigh so pipe doesn’t pull on urethra. Then after a bowel movement I put back into place and clip. Bit of a faff but you soon get used to it and it’s just a process.

User
Posted 10 Dec 2019 at 15:31

Originally Posted by: Online Community Member

Really easy to fit. Get the nurse to do first one  but basically top of front thigh ensuring plenty of flex from. The pipe to penis. When I sit on the toilet I release the clip temporarily and pull the pouch up to thigh so pipe doesn’t pull on urethra. Then after a bowel movement I put back into place and clip. Bit of a faff but you soon get used to it and it’s just a process.

Interesting when you say the top of front thigh. When the nurse fitted mine it was top of my thigh but on the inside not the front. Strange.

User
Posted 10 Dec 2019 at 15:43

For me it means the bag sits to the outside of the knee. I find this works well not only for access but when the bag is full it’s pretty big (500ml) and I would think would get in the way else where. I guess folks have various positions for location so what works for them is best I guess. I copied the location on other thought with spare statlock an equally comfortable either sitting, laying or walking.

Good luck for next week and I suspect you will figure out what works best as first few days was a learning exercise for me but now I kinda forget it’s there.

TG

User
Posted 10 Dec 2019 at 18:01

Tech Guy

Got to admit I don't always do it but.  The NHS advice is to empty your bag before it is half to  three quarters full.

Quite often you have to make do with what the hospital has available.

Thanks Chris

Edited by member 10 Dec 2019 at 18:03  | Reason: Not specified

User
Posted 10 Dec 2019 at 18:33

Hey Chris

ah thx top tip. I was drinking 2-3litres a day so got lazy when out or watching Netflix. 

I think I was fortunate going private as they seem to have quite a few options. Thankfully insurance picked up 99% of it.

TWOC Thursday morning so fingers crossed.

cheers

TG

 

User
Posted 10 Dec 2019 at 20:43

Thanks again everyone, lots to consider but I have a lot more idea going forward and hopefully be better prepared.

Hopefully I will have the results of my second urine sample this time tomorrow and get the all clear. I do still have some discomfort with my upset stomach, after taking laxitive on and off for few days, I am now too regular. Hopefully if my urine sample comes back negative then these other issues will not prevent me from going ahead. I will discuss these issues with my Urology department. Cheers again. Regards Dave

User
Posted 11 Dec 2019 at 14:17

OK finding it difficult to get my hands on the statlock. Tried local pharmacy and local doctor said I would be supplied by the hospital which I somehow doubt. Decided to buy some myself and are £4.50 each on ebay. How many do you think I will need to tide me over?

Anyone got a direct link to where I can buy these to make sure I get the genuine article?

Cheers?

 

User
Posted 11 Dec 2019 at 14:47

Hi Dave,

My statlock catheter fixing was glued to my thigh while I was in surgery and turned out to be very sturdy. So it might be worth asking which device will be fitted when you're in surgery.

Mine lasted the full ten days until the catheter was removed at the TWOC (trial without catheter) clinic where alcohol was used to remove it.

Hope this helps.

Kev.

User
Posted 11 Dec 2019 at 15:01

Sounds like you were one of the lucky ones. Fingers crossed they supply a different one to what I was given last time. However I have my doubts.Thanks for the heads up.

User
Posted 11 Dec 2019 at 15:28

Wow I didn’t realise the statlock would be that elusive to buy. Seems to be commonplace in US but less here. Sizing is critical as from what I can tell there are two sizes. Had both of mine on for two weeks without issue. The sticky surface bonds well and is released using alcohol. I’ve looked for sizing information on both of mine but can’t see anything indicated on the product. I would be tempted to call the manufacturer.

User
Posted 11 Dec 2019 at 15:32

Update If I haven,t bored everyone to death by now.

Just received the all clear from my Urine sample. Now clear of infection. So now all systems go for Monday. I still have the issue of my stomach . Mainly gas building up which eventually gives me pain as it travels south . Once I have opened my Bowels, all is fine. I think its slowly improving with the tablets ( Buscopan used for Irritable Bowl Syndrome) I have never taken this before and never had this problem before. Is this something I need to tell the Urology department about  or do I wait until the big day and see if it clears? Just answered my own question and have decided to give the urology a ring and now waiting for the prostate nurse specialist to call me back.

Edited by member 11 Dec 2019 at 15:35  | Reason: Not specified

User
Posted 11 Dec 2019 at 15:40

Yes best think is to chat with them. On the day if you have a full bowel or constipation usually they offer you something to clear you out pre-op. I suffer with IBS-C so I had a meal the night before which I know tends to get things moving in the morning and thankfully it worked. Should be fine on the day. I made a list of logistics to take with me etc and kept busy pre-op which Keats me from overthinking the whole process in my head. To be honest after the op was over I wondered why I had been worrying at all as all went very smooth and very little pain or discomfort.

User
Posted 11 Dec 2019 at 15:53

Good to hear Techguy. Hopefully this is not an issue. My local GP doesn,t seem to think so as long as my urine sample came back negative.

User
Posted 11 Dec 2019 at 16:56

Dave 

A statlock will last me for 14 days although the recommendation is change it after 7 days. There are two versions of the statlock one for standard catheters and one for the triple port catheter. I have tried to source a larger size statlock but my prescription service say there is only the one size.  Ugo do a similar fixation device which is slightly bigger, they did have an issue with the adhesive but they have now resolved the problem. I get my statlock on prescription.

Thanks Chris

User
Posted 11 Dec 2019 at 18:00

Originally Posted by: Online Community Member

Dave 

A statlock will last me for 14 days although the recommendation is change it after 7 days. There are two versions of the statlock one for standard catheters and one for the triple port catheter. I have tried to source a larger size statlock but my prescription service say there is only the one size.  Ugo do a similar fixation device which is slightly bigger, they did have an issue with the adhesive but they have now resolved the problem. I get my statlock on prescription.

Thanks Chris

Chris I will have another go with the doctors to see if I can get a prescription and then I suppose the Pharmacy will then need to order one up. Will have another go for Instalagel too.

I just got the call back from the specialist Prostrate cancer nurse who has confirmed they do not supply that kind of Catheter( Cheapskates)  Good news,Does not think my current problems will be an issue and the RARP will go ahead as planned . Just need to inform them I am on new medication on arrival.So  Good news. I think .

User
Posted 11 Dec 2019 at 19:01

Dave 

Just a thought do not shave your leg before the op, I have heard of cases where surgery has been cancelled because someone thought it was a good idea. Our hospital pre op sheet says "do not shave any area before surgery".

I used standard thigh straps for years they are more than adequate for the job. I only switched to statlock because I was getting sweaty during the summer. You don't want a triple port catheter 😃, they are used for frequently flushing the bladder. 

Thanks Chris

Edited by member 11 Dec 2019 at 19:09  | Reason: Not specified

User
Posted 11 Dec 2019 at 19:06
Yeah...... if they want parts of you shaved, they will shave you. Nothing is sacred..... nothing.

Nick

User
Posted 11 Dec 2019 at 19:31

Originally Posted by: Online Community Member

Dave 

Just a thought do not shave your leg before the op, I have heard of cases where surgery has been cancelled because someone thought it was a good idea. Our hospital pre op sheet says "do not shave any area before surgery".

I used standard thigh straps for years they are more than adequate for the job. I only switched to statlock because I was getting sweaty during the summer. You don't want a triple port catheter 😃, they are used for frequently flushing the bladder. 

Thanks Chris

Chris perhaps I am worrying too much. Just trying to think of every eventually. Hopefully I am a bit better prepared. Never gave the shaving a thought to be honest but thanks for the heads up. Just an enema to look forward to the night before which looks interesting and doesn't sound much fun haha. Regards Dave

User
Posted 11 Dec 2019 at 19:37

Yeah let them shave you. Although I shaved from downstairs to jut above belly button. The nurse thanked me as saved her a job. I remember reading that any hairs near the port wounds can get caught in the stitching and get slowly ping’d out. Pleased to say it’s growing through now as I looked like half an effort at body shaving. They shaved up my arm to put a line in after they knocked me out. Looks a bit patchy all over but all good as it will grow back. The compression stocking are good as very warm for winter time. Summer would have been a bit warm with them.

User
Posted 14 Dec 2019 at 15:15
hello again everyone

Less than 48 hours to go. Received the confirmation phone call for time . 7.30 am Monday. So final day of preparation tomorrow. Think I have all bases covered, although was still unable to get any Lidocain or similar. Now relying on the hospital to supply it. Feeling rather relaxed about it all, although I did wake very early this morning and couldn,t clear my mind of last minute things. Thinking of having a nice sunday lunch tomorrow before 8pm enema. Wondering if its just a waste Haha.

User
Posted 14 Dec 2019 at 15:18

Best of luck of Monday. Yeah have a nice meal and I did mid afternoon. 

look forward to your updates post op

User
Posted 14 Dec 2019 at 16:07

Good luck on Monday.  I had the op on 16th Dec 2016 although it was Friday.   I was out on the 18th.  The catheter and staples were removed just before new year.

I wasn't aware of shaving and was surprised to awake with a bare stomach.  Also they gave me an enema tablet to take the night before and in the morning, after eating nothing after the evening meal.

It's nice to go to sleep and awaken with it done.  Lie back and think of nothing.   All the best.  Peter

User
Posted 14 Dec 2019 at 16:16

Hope all goes well on Monday. 

Ido4

User
Posted 14 Dec 2019 at 16:41

Originally Posted by: Online Community Member

Best of luck of Monday. Yeah have a nice meal and I did mid afternoon. 

look forward to your updates post op

Cheers

User
Posted 14 Dec 2019 at 16:43

Originally Posted by: Online Community Member

Good luck on Monday.  I had the op on 16th Dec 2016 although it was Friday.   I was out on the 18th.  The catheter and staples were removed just before new year.

I wasn't aware of shaving and was surprised to awake with a bare stomach.  Also they gave me an enema tablet to take the night before and in the morning, after eating nothing after the evening meal.

It's nice to go to sleep and awaken with it done.  Lie back and think of nothing.   All the best.  Peter

Cheers Peter

 
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