My Retzius sparing RARP + NeuroSAFE journey

Had a couple of issues over the last couple of days with blood in urine and maintaining catheter bag position. Turns out it was my fault/user_error :-). When I clipped the tube/bag in place and also fitted the adhesive fixing point and clip I didn’t clip the pipe in at the Y connector which fixes it in place. #n00berror. Once I did the blood in urine and soreness at end of penis have settled. Looks like blood was being caused by the Boldon in bladder stressing the bladder wall. This stopped when the Y-pipe was properly clipped in. Hope this helps others if they have the same issue.

Other than that the 500ml is quite compact so looking to upgrade to 750ml just so I don’t have to empty so often. Amazing how quick the bag gets filled when properly hydrating. Amazing how everyday things you take for granted change their dynamics with something like this. Thankfully temporary and the 12th is scheduled for removal and testing/tuning of the mk2 beta urethra gets road tested.

Hi Chris

Totally. Yes, have a few 2ltr for night bags to sup line to the 500ml day bag. Having a big of a headache today with blockage. I think caused after opening bowel and blood. Getting anything from 25ml to 250ml every 30mins after a totally stoppage for an hour between 3 and 4 today. Drank 3.5 pints of water and keeping active. Seems to be slowly clearing although variable. Just keeping up the efforts to clear it as took professional advice from the docs and they said if carries on it will mean A&E to be flushed. Spoke to a friend and ex doctor with a bag and tried reverse milking the pipe near penis and just walking up and down stairs and slowly improving flow and clots in urine which is positive. All good fun eh 🤔🙄😃

Thanks Chris

Will try the side laying thing. 

yes, keeping a steady stream of liquids going in. Now free flowing out but getting 100-200 per half hour.

will see how it goes and if need be get it flushed.

Totally agree ref flushing. If that’s needed will go back to London to the team that installed as don’t want the huge op undone by a n00b 

best

Simon 

Hey Chris

its cool, I work in IT so will add it as a Canonical name :-)

The laying on side suggestion was absolute genius as cleared very quickly. Back milking the pipe helped too. After these suggestions I was back to getting ~300-500ml/hr. Never before have I been so pleased to see 1.75ltr or urine by my bed in the morning lol

Time for my clexane breakfast and to switch to autonomous mode.

still amazes me I had major surgery last week as feel really good. Bowels online but obviously taking it very easy as mindful if stitches and internal wounds post Da Vinci.

thanks again for the amazing suggestion and help on here. Absolutely invaluable.

simon

Hahaha

still have catheter blockage issue but in touch with CNS at LB. I think ultimately might be to get flushed. Tried all the usual things and found pumping leg up and down gently from 90 degrees pumps urine through slowly like an old well. Taking 30min measurements so the drama is ongoing 🤪

update: resolved the block walking and raising thigh perpendicular to your body works well and seems to have for now opened the sluice gates. Picture ministry of silly walks 🤷🏼‍♂️

Edited by member 02 Dec 2019 at 12:02  | Reason: Not specified

Catheter removed yesterday morning at 11am. Little bit of a sting but the clinical nurse specialist (CNS) was gentle so all good. Statlock removed some hair like a waxing even with lashings of alcohol. 

Then onto testing continence. From the word go a could pee and stop/start with no dribbling. At intervals of ~20mins I improved slowly: 50ml, 100ml, 150ml, 200ml, 250ml. Then was scanned by the CNS and given the all clear to go home clad in an adult nappy and tena level 2.

Trip back included a 30min tube and then 30min train ride. I took a pit stop at every opportunity along the way. Unfortunately Paddington suspended all services when I arrived so had to decamp to Alternative Station. This meant ~90min journey so sat near a loo. About 35mins in got a twinge from downstairs indicating I need a pee. Then found all the facilities were out of order. Waited a few more stops and managed to hold it while sweating until located a guard and found alternative facilities in far end of train. 

Got to home town and made it home only to step in through the door and feel a warm sensation downstairs. I made a b-line for the loo and emptied plus dried up. 

After being pretty much normal continence all afternoon I noticed a fairly regular trickle of pee especially when laying on the sofa propped up with cushions. I guess this puts pressure on the sphincter below the bladder which is also battered and bruised plus urethra and penis pretty numb too after 15 days catheter. 

Trying to pass wind also pushed a small amount of urine out. Coughing, clearing throat and sneezing spring a small spurt of urine when on the sofa. Managed the leaks and drips through the evening and hoping this isn’t the shape of things to come. Re-read the profs notes and reassured that’s it’s quite common early days plus when tired. 

I geared up for the worse come bed time. Adult nappy back on with tena 3 and additional kitchen tissue adding extra buffer. Bed double waterproofed with absorbent tena pads to soak up anything during the night and hospital grade (waterproof) duvet and pillows in place.

happy to report during the night although I was up for a pee every few hours and catching the election shenanigans in the morning there were no drips or wetness so hard was a big positive.

This morning no issues until I sat on sofa in propped up laying position when I got a few drips. Plus when I needed to pass wind another small amount of urine emitted and caught in pads/kitchen roll.

im optimistic as can start/stop without issue and for the most part dry.  Hoping the leaks and drips are just as result of post urethral catheter swelling plus obviously the stitches around the urinary sphincter (which also feels sore when articulated). It’s a bit battered and bruised and hopefully when this settles in will have pretty much full control. From the profs notes the biggest gains are during the first six weeks in respect of everything settling plus stitches associated with the anastomoses dissolve as I think they hold the sphincter open a little until they disappear.

Onwards and upwards. Good to be fully autonomous now both night and day :-)

Edited by member 13 Dec 2019 at 19:54  | Reason: Not specified

Hii am 4 weeks over a robotic assisted rp nearly the same as yourself.

Have found the kegel exercises really good - try doing them on 1 leg and them the other with the knee raised

I am pad free at mo but do have the odd accident particularly when forcing wind out

Haven't even thought about the Ed side of things because had a nasty uti when catheter came out - now that was pain

keep in touch

Hello Mark, sorry to hijack the post. My hubby has also been diagnosed, gleason 6 been on active surveillance for 10 months or so, psa fluctuating between 4.5-5.5, wonder if we should just bite the bullet. Did you also go down the retzius - sparing? How is your recovery now? Hope great progress is being made. Thanks very much for your help!

Edited by member 07 Jan 2020 at 17:24  | Reason: Not specified