After the R.P - advice and tips please - - Page 2Localised cancer

User

Posted 27 Oct 2019 at 22:28

The movicol should do the trick. It’s very common to have bowel discomfort and takes a few days to “restart”.

User

Posted 28 Oct 2019 at 04:13

His bowels will have been extensively rearranged by Da Vinci and his robotic arms to get to his target, and then just piled back into place. Peristaltic bowel action will have been disrupted, and it will just take time - and movements - to get his bowels back where they should be.

You might want to nip to the chemist’s today and buy some Fybogel sachets (isphagula husk), roughage in an orange drink. They gave me some when I was discharged, together with senna tabs, but I didn’t need them.

Cheers, John.

Edited by member 28 Oct 2019 at 04:17 | Reason: Not specified

User

Posted 28 Oct 2019 at 10:42

Hi Everybody,

It’s Girlygirl’s OH - Marky Mark aka The Shadow. Thanks for all the advice. I had been avoiding my diagnosis up to the last minute as work dominates my life. However I had spent enough time to consider and review my options and knew RP was the best option for me. This will explain total radio silence from me personally and OH has been my PA, Advisor, and Superstar Wife.

Happy to share advice and experiences with you guys and anybody else that finds themselves living with or newly diagnosed with PC. I am day 4 post op and heading out for a walk today in the lovely Lancashire sunshine.

Best wishes

User

Posted 03 Nov 2019 at 15:55

Hi can I ask about incontinence on behalf of my oh. He had the RP 24th Oct and clamped off the catheter bag on Friday ( as advised by hospital) he was dry for 2 days and nights and then today he is having difficulty in controlling his bladder. He has started drinking coffee ( double espresso) so we’re wondering if this is the problem ? He’s back tomorrow to have the bag removed. Any advice please?

User

Posted 03 Nov 2019 at 16:39

Not sure what u mean about clamped off ?? Is the catheter tube still in ? And where is his urine going ??

I’m the worlds worst patient and ignore most advice , but I do know that double espresso isn’t going to help. Then again my op was summer 2015 and I was straight on the lagers and wine haha.

User

Posted 03 Nov 2019 at 16:50

Hi Chris thanks for the quick reply yes his catheter is still attached- it’s a supra pubic catheter but he was told to turn it off and pee normally. Yes I agree the double espressos were definitely a bad idea especially as he has been dry since Friday am. He enjoys wine, beer and gin too but I’m trying to keep him off them for as long as possible 😉

User

Posted 03 Nov 2019 at 17:58

Ok I get it !! It’s very soon to assess continence tbh. But normally if you are one of the lucky ones ( like myself ) it was quite instant , but still say one pad a day for 3 months. And in reality a pad could last 3 days if I’m honest. Just take things easy for a few weeks. In my case I think beer ( not too much ) was better than anything else except water lol. It’s good to keep as much flushing through as possible. My wife was really understanding and for a while we used the big absorbent pads under the bed sheet. It took all the worry away tbh.

User

Posted 03 Nov 2019 at 18:37

Caffeine and alcohol are a big no no while trying to restore continence. Drink plenty of water to keep it all nice, fresh and non irritating.

User

Posted 03 Nov 2019 at 19:18

GirlyG

The SPC is also going to have an effect on the bladder and possibly cause spasms. That is when the bladder contracts and you have no control over the bladder, contracting the pelvic floor muscles may stop some of the leak, but I find it is more comfortable to let it leak.

Thanks Chris

User

Posted 04 Nov 2019 at 19:17

I found the SPC very irritating once It was clamped off and the bladder started cycling again. Mostly it made me think I needed to go all the time but continence wasn’t actually affected.

Getting it out was huge relief, but then it had been in 28 days by then......

User

Posted 05 Nov 2019 at 06:29

Hi Marky Mark aka The Shadow

How are things going. I am going in for PR in 3 weeks. I still have so many questions and concerns about the post op scenarios so keen to know how you’re getting on.

Grant60

User

Posted 05 Nov 2019 at 09:46

Same here. Got a date for the end of the month with the prof whocannotbenamed Really impressed at first meeting so moving forwards to Retzius sparing RARP + Neurosafe. Good luck all and may the force be with us :-)

User

Posted 05 Nov 2019 at 15:11

There are many ‘what ifs’ regarding PCa, but I will never ask myself ‘What if I had had a different surgeon to Professor Whocannotbenamedhere?’

Best of luck to those of you undergoing surgery soon. I hope your operation goes as smoothly as mine did. Apart from the bloody infected suture wounds of course...😉

Cheers, John.

User

Posted 05 Nov 2019 at 22:53

Hi grant60 and tech guy

I had my Retzius sparing RARP on 24th October around 9am. Day of Op I was pretty nervous but put at ease by the surgeon.

Post Op.Day 1 Abdomen was really sore but this was to be expected. Worst bit was the trapped gas which was very painful in back shoulders and chest. Day 2. I was fairly mobile and discharged from hospital with suprapubic Catheter I’ve been Taking the painkillers as advised.

Day 4- finally first bowel movement which was a great relief ( take plenty of Movicol to help this)

Everyday thereafter I’ve had continued improvement and have been active playing my guitar “badly” and taking gentle walks and cooking. Days 9 and 10 managed a walk each day of around 5k, albeit suffered leakage as I had clamped off catheter and peeing normally through the old fella. Day 11 had Catheter removed- huge relief Day 12 today (5th November)went back to work for 5 hours.

I am not 100% but considering what I’ve been through I am happy with progress. Remember the pain in the first 48 hours you soon forget. It’s a moment in time but it is purgatory whilst it lasts. But listen to your body if you are tired rest, sleep and eat well. I have no regrets choosing RRAP over Radiotherapy. Very best of luck. Marky Mark aka The Shadow.

Good luck and best wishes

User

Posted 05 Nov 2019 at 23:48

Cheers Mark

thank you for the heads up of days post op and hope you continue with your fantastic recovery. Retzius RRAP + neurosafe just seems to make sense. I looked at proton beam but with multifocal (5/20) cores Gleason 6 biggest 5mm and smallest 0.5mm made sense just to get it done.

as you can imagine it’s like a military logistics routine getting stuff prepped as obviously nervous too. Just trying to source some full zip tracksuit bottoms or at least loose so will go up a size. Won’t be going for the London look post surgery.

im booked in last week of November for a 7am check in. Coming from just outside about an hours car drive so think I will get a hotel near the hospital night before rather than train tube that morning as my head will be spinning I suspect. Won’t get much sleep here or in hotel but plenty of time for that later.

By default my stay is two nights after the op. My insurance company said they would cover me for three nights if needed. I’m tempted to just go with this as another day will mean I am a lot stronger plus travelling home via taxi on a Saturday v Friday afternoon around the M25 has got to be easier. What do you guys think?

Top tips on bowel movements. I get IBS-C quite a bit so will dog out the movicol/fibogel plus for a few days eat very light diet of fruits, nuts, seeds and plenty of veg. I find chick peas really good but will see if they also do the trick in this situation.

Hoping to have as good a time as mostly reported here in terms of continence. Will be patient and follow all instructions.

Have a good week and I wish you the very best with your healing.

Edited by member 06 Nov 2019 at 19:23 | Reason: Not specified

User

Posted 10 Nov 2019 at 21:49

Hi tech guy

sorry for late reply - I’ve been back to work and socialising this weekend - it’s so good to feel relatively back to normal after such a short time.

I got Canterbury joggers from Amazon get ones with full zip which helps with the catheter and I found that these were great and actually looked ok.

Regarding your stay I spent two nights in hospital and one afterwards in a hotel to ensure that everything was ok before the train trip home. However if you can stay in the safe sanctuary of the hospital I’d advise that so you feel a bit stronger and more able to face the outside world!

Also for information my wife ordered a prostate card from this site which gives you access to disabled toilets ( credit card size and says you need quick access to toilet ) we think that this will be helpful as disabled toilets have disposal bins for the tena pads which ordinary male toilets lack!

User

Posted 11 Nov 2019 at 06:11

Originally Posted by: Online Community Member

You can buy Radar keys for ‘disabled’ toilets from eBay for about three quid, not that I was in need of one after about three weeks post-op.

Cheers, John.

User

Posted 11 Nov 2019 at 17:17

Hey GG & John

thanks for the heads up regarding the joggers. That was exactly what I was looking for and will save me cutting up an old pair and Velcro :-)

my insurance pay for three nights so will scope it out. Every day will make such a difference I suspect in terms of strength and healing.

i have a disabled toilet key from old. Originally got it for ibs but never used it in reality as way too big for my keyring. It looks like a key from Game of thrones.

on the shopping list so far: tena level 3 pads, night stand for bag, gel packs in case I need to drain off bag in transit and can’t find a place to stop, ring cushion for the sofa, buscopan, movicol, alcohol wipes.

thanks again

simon

User

Posted 11 Nov 2019 at 18:06

Hi Simon,

You are certainly more prepared than I was pre-op! I actually got given a night stand for the catheter bag from the hospital ( think that you’re going to the same guy and place) so suspect that you will get the same. One thing which I needed was Ibruprofen and Paracetamol which I didn’t get from the hospital upon leaving but needed ( my wife had to trawl the streets of London at 10pm in search of painkillers! )

Don’t go too crazy on buying Tena pads ( like my wife) as at 3 weeks post op I have minimal problem with incontinence and hope that you will be as fortunate as me!

Back to London on Friday to get the histology results for the rest of the prostate so everything is crossed for good news.

Good luck to you and let me know how you get on.

Mark

Edited by member 11 Nov 2019 at 18:07 | Reason: Not specified

User

Posted 11 Nov 2019 at 20:13

Hi Mark

Ive been busy making a list when reading feedback on here and talking to peeps in a local support group. Bed and duvet protector just added to it :-)

will start to stock up on paracetamol/ibuprofen. Better to have too much I guess.

totally on the tens front. Just bought one pack as figured will play that by ear as they are just a click away from delivery online.

hope Friday goes well and histology is what you expect. Please let us know how it goes too.

best

simon

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