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Home after RP, what to expect

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User
Posted 08 Jun 2020 at 20:58

So other half is back at home today after his RP.


i have no idea what to expect. He seems in quite a bit of pain and food makes him feel sick. He had the op two days ago. Very early days I know and I admit he has a low pain threshold. His stomach is rumbling but he doesn't want to eat much. He had a ham salad, which he ate halfheartedly.  He says his stomach feels all upside down. I don't know what's wrong. He's on injections for blood thinning. Omneprazole, tolteradine and inbuprofen. Also paracetamol as and when.


I am a terrible worrier. Why is his stomach and appetite so bad? How much pain should he expect?


Sorry, I must sound silly but I don't know what to expect going forward.

User
Posted 03 Jul 2020 at 15:04

Hi LW,


Seems I got off lightly by comparison, one of my wounds opened up later the same day I had the staples out. It was one of the smaller wounds on the left. Luckily infection free, but it was a good centimetre deep and I was getting it repacked and dressed by the nurse every couple of days or so. Checking my notes, it was almost a month later that I stopped wearing a dressing, after that, it started scabbing over and healed up. The scab was still there on my 6 week check up. 


Hope this helps. 


 


Kev

Edited by member 03 Jul 2020 at 15:52  | Reason: Grammar

User
Posted 03 Jul 2020 at 21:57

think I had glue and hidden dissolvable stitches in all my wounds. One was a bit open and weepy for a few weeks after surgery although it eventually settled.


I kept it really dry and didn’t touch it at all. Loose fitting sports trousers and I kept the elastic band down away from the wound. Took a good 6 weeks to settle. After washing I would blow dry it clean. I ran the blow dry a minute or so on max heat to sterilise the inside before blowing across the wound size gently just to remove any water. Sounds like you are in expert hands. Just keep an eye on it for any change and/or fever plus don’t touch or put anything on it if you can. Will just take time to settle down I suspect which isn’t helped if it water like recent temperatures.


best of luck with the healing journey.


TechGuy

Edited by member 04 Jul 2020 at 10:24  | Reason: Not specified

User
Posted 03 Jul 2020 at 23:01

I purchased some hipster trunks from Asda that were very good and supportive without being too tight. They allowed the pad to be positioned optimum and it didn’t move when I was out walking or in town. shout if you need a link as one of my best purchases for surgery.


Great news on the peeing. It will feel as though there are three steps forward and two steps backwards a lot. Just keep the faith and things will improve over time.


TG

User
Posted 04 Jul 2020 at 09:57

LW


Similar to TG, snug elasticated trunk type under pants, keeps the pad in place , my Tena 2 has an adhesive bit to stick to the underwear but I never use it. 


I have  a suprapubic catheter that comes out just below where the big port was, it does get quite warm in that area. The only time my catheter wound as been infected was when there was a dressing on it.


Good news on the trip to the loo.


Thanks Chris


 

User
Posted 04 Jul 2020 at 10:13

I had six laparoscopic surgical wounds (instead of the usual five, due to a supra-pubic catheter) and they were troublesome as some of the the “dissolvable” sutures did not.


Several of the wounds became infected, requiring a course of antibiotics and three trips to see the nurse who was equipped with an illuminated magnifying glass and tweezers to remove the ultra-fine thread.


The raised wound below my navel where the catheter came out has finally disappeared inside my pubic bush, two years later.


I think your old man is getting there. Best of luck.


Cheers, John.

Edited by member 04 Jul 2020 at 10:15  | Reason: Not specified

User
Posted 04 Jul 2020 at 10:35
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User
Posted 08 Jun 2020 at 23:33

Littlewren


We all react differently to anesthetic and pain killers etc. Depending on the type of surgery  he has been bashed about, possibly been semi inclined upside down for a few hours, pumped full of gas and had bits taken. Being in a hospital ward is not the best place for recovery.


You should see a vast improvement in the next few days , keep him hydrated and if he hasn't already passed a motion make sure he doesn't get constipation. Once his bodily functions get back to normal his appetite will return to normal as well.


Some painkillers can cause constipation. I don't recall being in too much pain and I kept refusing painkillers.


Always difficult seeing a loved one not at thier best , but in the next few days you should see him getting better. Take it easy but not too easy, he needs to keep mobile but no running marathons.


If you are worried about him call for medical advice , we keep being told the NHS is open for us.


 


Hope all goes well.


Thanks Chris

User
Posted 09 Jun 2020 at 00:30

Littlewren,


As Chris says, agree.  as long as hydrated and keeping food down..  Should all get a lot better quite quickly.


I didn't have pain, only discomfort. He should be up and about short walks around room, certainly not laying in bed.  It took around 3 weeks before my digestive system was anything like normal, quite bloated.  I ate lighter more regular smaller meals. I ate some standing up.  I found it easier to not sit down for long periods or sit on a high stool (no pun intended !)   As long as positive progression is seen each day, no worries.


Omneprazole & tolteradine  ?  Have these been prescribed recently then  ?


I assume you/he is daily self injecting    :    Dalteparin (Fragmin  Brand) ?     Was he prescribed Ibuprofen, also ? if I remember I was told Paracetamol only for some reason. 





 
Gordon



 


 


 


 

Edited by member 09 Jun 2020 at 00:48  | Reason: Not specified

User
Posted 09 Jun 2020 at 05:49

Omeprazole is prescribed to protect the stomach lining from the various analgesics such as paracetamol and ibuprofen.


You can read the account of my surgery and recovery below.


Best of luck.


Cheers, John


https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

Edited by member 09 Jun 2020 at 05:52  | Reason: Not specified

User
Posted 09 Jun 2020 at 06:47

Litttlewren 


I am six weeks post op with RP and I felt exactly the same the pain was really bad to start  for reasons already mentioned by the other guys , he needs to try and eat little and often keep fluid intake up and try to move about between resting . If he can try to eat things with fibre in ( also prunes are good ) as constipation is another issue he can do without , it does all settle down but even now I still get pain in my lower region when I ask my cancer nurse she said this is the norm . Hope this helps you a little as I'm no expert just going on my experience.


Good luck 


Bakerboy 


 

User
Posted 10 Jun 2020 at 11:24
Thank you guys xxx

He's better now in as much as the sickness has gone. He polished off a spagbol last night with no ill effects.

He must have stretched himself last night bending to undress/ sort catheter because he had a pain in one of his wounds ( keyhole). It woke him at 7 am again and he got up but he's still got discomfort. So I suppose he's taken a small step back today but I imagine these things must be expected?
User
Posted 10 Jun 2020 at 11:52

Hi,


I had staples which were pretty sore pulling on my swollen abdomen and would often wake me up in the night, especially when they snagged on bedding. I felt so much more comfortable once they were removed and the catheter was out. My other half helped with the catheter duties until I got a little flexibility, not everyone's cup of tea I know. 


As others have mentioned, keep mobile (but don't overdo it), and stool softeners are a good idea as I found the first post-op poo to be a bit daunting. 


Best of luck. 


Kev


 


 

Edited by member 10 Jun 2020 at 14:28  | Reason: Not specified

User
Posted 10 Jun 2020 at 12:13

Hi,


I had an open prostectomy about 11 weeks ago now and the first week was pretty tough. Quite sore, struggled with the first bowel movement ( stool softeners definitely a good idea), and struggled to sleep as I could only lie on my back as I am used to and breathing capacity was lower. BUT once that catheter is out you start to feel you are making progress and things get better each day- but don't overdo it. Now, I'm up to cycling 200km a week or so and running a couple of times a week. So, stick with it, watch for any infections and don't do too much. I did find walking from day 1 helped a lot. Not far at first but gradually building things up

User
Posted 10 Jun 2020 at 14:14
Thank you guys

He has been to the loo. The surgeon said he probably wouldn't go until Wednesday and sure enough today was the day. They gave him movicol to,take home and we had lift off today. So that was 3 days.
I think he just needs take it gently until whatever he has stretched calms down. He says it like a sharp needle. Possibly in the bigger wound where they actually took the prostate out. From now on he's going to dress/ undress sitting down, no more stretching down.

We had a call today from the continence people. They are going to do a delivery of pads in a week ready for the removal of the catheter soon after. Just waiting a phone call to arrange that, probably end of next week.

Will keep this updated , because it does help to voice my worries and it may help someone in the future when they come out of hospital.

I should also add, if any one is worried about their op being postponed due to covid. Not sure if all areas have kicked back in with their ops but to tide over the wait between diagnosis and surgery, he was put on hormone treatment to put a brake on progress. So it's an option if any one is in limbo land.
User
Posted 10 Jun 2020 at 15:29

Hi I had RP sept 2018. Surgery was more extensive than anticipated but excellent result to date. My first 24 hours were tough. On my return home everyday got better and better. I was advised to undertake a daily gentle walk once i returned home - only a short distance. Getting the blood circulating was good. Once catheter was removed I was well on my way - gases in my abdomen had dissipated and whilst still a bit tender all good - very little leakage. No problem eating. Kept doing daily walks getting longer and longer. After a month no leakage no pads. Started gentle jogging. 
The bit that I underestimated was the ED - I had nerve sparing and lost about 60% of the nerves. It’s only now I am beginning to come to life. I was told to be patient and indeed the prophecy was correct.

User
Posted 10 Jun 2020 at 22:36
Just a quick comment (I don't look at this forum every day, so only just seen your thread).

I don't know about others, but I underestimated how big an operation prostatectomy is. The incisions may be small with the robot, but it really messes around with your innards. I was zonked, everything seemed like hard work, and for months I ran out of steam in the evening and went to bed early. But I gradually built back up to previous stamina levels.

I hope your other half has a good recovery, but give him time.
User
Posted 13 Jun 2020 at 12:54

Week gone by, getting better.


Just wanted to ask, how long should he be wearing the compression stockings he was given. His feet are a bit puffy, not too bad. All she said was wear them until you are a bit more mobile. He's moving around every hour and going for a short walk outside in the garden a few times a day. Still working through the 28 days of blood thinning injections but I'm not sure when the stockings should come off.

Edited by member 13 Jun 2020 at 12:56  | Reason: Not specified

User
Posted 13 Jun 2020 at 13:52

Hi,


I was told two weeks and given spares when I left hospital (although some trusts might vary). Binning them felt so good and was another step towards normality. 


Good luck. 


Kev.


 

User
Posted 16 Jun 2020 at 15:29
Guys, what's that cream/gel called that soothes soreness from the catheter. It begins with an 'i', if I remember right.

Husband is complaining about soreness where the catheter goes in. He has another week to go yet before the removal :(
I was wondering too, if his pelvic floor exercises aren't helping in this respect. On his take home info sheets, it said ito start the exercises a week before removal ( although tbh he did start them earlier.) It seems there are two schools of thought regarding doing the exercises while the catheter is still in.
User
Posted 16 Jun 2020 at 15:44
Instillagel - if you can't get your hands on that quickly enough, you could use plain sterilised KY jelly inserted just inside the eye of the penis; it doesn't have any local anaesthetic in it but will reduce the irritation.

Surprised to hear that the info sheet suggests starting PFEs while the catheter is in place; generally, the advice is the opposite of that! I would give them a miss for the time being.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2020 at 15:51
That's the stuff....thank you Lyn x
I was surprised too tbh. He was doing them pre op and was too sore to continue them straight away after the op but restarted as instructed. I did wonder if it was a good idea with the catheter in. I suppose hanging fire for another week won't make much difference.
User
Posted 25 Jun 2020 at 20:17
Catheter out a few days now ....feels much more mobile. Getting through fair amount of pads. He can sense when he needs to go to the loo but can't quite make it there to get the lot in the toilet but some certainly gets there. Not dry at night. Getting up from sitting and walking about seems the worst of it.
Anyway..I'm not sure he's doing the pelvic floor exercises right. I says he can feel a tightening but I've noticed he's using his abdominal muscles too, clenching them as if he's going for a six pack.
His biggest wound is under the Doctor, it's weeping a lot and the glue has washed away. They've swabbed it for infection but I don't think there is one. It's only skin opening, nothing underneath but I do wonder if all this stomach clenching is aggravating it's healing?
User
Posted 25 Jun 2020 at 21:42

LW


My take on PFEs. There are three stages, first stage moves / lifts the penis slightly. Second stage stops the flow of urine and holds in wind. Third stage stop you pooing yourself. 


Second stage is were to concentrate on. Six pack muscles are a completely different set of muscles, if I contract my six pack muscles is distracts from the efficiency of the pelvic muscles.


Of course we are all different.


 


Thanks Chris

Edited by member 25 Jun 2020 at 22:37  | Reason: Not specified

User
Posted 29 Jun 2020 at 09:44

Had my RARP on Saturday June 6th and had to wait until the following Wednesday before my first poo which was not like normal for me on the tuesday started taking a laxative called Laxido which helped me go. Pooing still not normal go first thing in the morning then quite a few smaller ones during the day seem to get the feeling I want to go. Could be still getting some discomfort from the prostate site but all small price when you told no further treatment required

User
Posted 03 Jul 2020 at 13:28
So, he's having problems with his large wound still....4 weeks post op.

He's having it dressed 3 times a week by the nurse and a week ago had a swab. It came back with an infection so he was treated with flucloxocillin. It won't stop weeping.
Today he went back for a redress and she said it had opened and was oozing. Now he's got the flucloxocillan plus metronidazole

I'm wondering if this has anything to do with the fact that his drain in the hospital was collecting more fluid than they expected. At one point they were worried it was urine and he had a internal leak. On testing it, it was found to be normal bodily fluid. Plus about 10 days after the op, while I was washing his joggers he stupidly put his jeans on ( with a belt) and proceeded to bend forwards to the computer desk.
I have a feeling the belt edge rubbed the wound and started this whole debacle off.

Has anyone else had problems with their wounds and when did they resolve themselves. This getting him down now, he feels he's not progressing forwards.
User
Posted 03 Jul 2020 at 15:04

Hi LW,


Seems I got off lightly by comparison, one of my wounds opened up later the same day I had the staples out. It was one of the smaller wounds on the left. Luckily infection free, but it was a good centimetre deep and I was getting it repacked and dressed by the nurse every couple of days or so. Checking my notes, it was almost a month later that I stopped wearing a dressing, after that, it started scabbing over and healed up. The scab was still there on my 6 week check up. 


Hope this helps. 


 


Kev

Edited by member 03 Jul 2020 at 15:52  | Reason: Grammar

User
Posted 03 Jul 2020 at 17:18
Thanks Kev. It's just getting him down because he feels fine in himself. Ok, peeing for England but getting his PFEs done and in no pain anymore. He's walking about a mile with no issues but this wound is slowing him down. He's frightened to do anything.

I think we would both love to see a scab form

The skin wounds were glued, I wish they had been stitched or stapled. But they won't do so now because all the stuff has to come out. Dissolving stitches for the deeper cuts but touch wood they are fine.
User
Posted 03 Jul 2020 at 21:57

think I had glue and hidden dissolvable stitches in all my wounds. One was a bit open and weepy for a few weeks after surgery although it eventually settled.


I kept it really dry and didn’t touch it at all. Loose fitting sports trousers and I kept the elastic band down away from the wound. Took a good 6 weeks to settle. After washing I would blow dry it clean. I ran the blow dry a minute or so on max heat to sterilise the inside before blowing across the wound size gently just to remove any water. Sounds like you are in expert hands. Just keep an eye on it for any change and/or fever plus don’t touch or put anything on it if you can. Will just take time to settle down I suspect which isn’t helped if it water like recent temperatures.


best of luck with the healing journey.


TechGuy

Edited by member 04 Jul 2020 at 10:24  | Reason: Not specified

User
Posted 03 Jul 2020 at 22:33
Thanks TechGuy. I've told him to lower the waist band of his joggers and pants but he immediately came back with,if I do that I can't keep my pads in place :-0 I can see what he means, if the elastic lies on his hips, the pad won't be snug. But I do agree with you about the waistband being a possible irritant...although there is a dressing in place over it.

He's just had a breakthrough moment...felt he needed the loo, got up...no leaks! Went to toilet, all urine successfully down the pan and back in front of the film. Not actually done that before without movement leakage. I don't think for a minute this will happen every time just yet but it certainly gave him a boost.
User
Posted 03 Jul 2020 at 23:01

I purchased some hipster trunks from Asda that were very good and supportive without being too tight. They allowed the pad to be positioned optimum and it didn’t move when I was out walking or in town. shout if you need a link as one of my best purchases for surgery.


Great news on the peeing. It will feel as though there are three steps forward and two steps backwards a lot. Just keep the faith and things will improve over time.


TG

User
Posted 04 Jul 2020 at 09:57

LW


Similar to TG, snug elasticated trunk type under pants, keeps the pad in place , my Tena 2 has an adhesive bit to stick to the underwear but I never use it. 


I have  a suprapubic catheter that comes out just below where the big port was, it does get quite warm in that area. The only time my catheter wound as been infected was when there was a dressing on it.


Good news on the trip to the loo.


Thanks Chris


 

User
Posted 04 Jul 2020 at 10:13

I had six laparoscopic surgical wounds (instead of the usual five, due to a supra-pubic catheter) and they were troublesome as some of the the “dissolvable” sutures did not.


Several of the wounds became infected, requiring a course of antibiotics and three trips to see the nurse who was equipped with an illuminated magnifying glass and tweezers to remove the ultra-fine thread.


The raised wound below my navel where the catheter came out has finally disappeared inside my pubic bush, two years later.


I think your old man is getting there. Best of luck.


Cheers, John.

Edited by member 04 Jul 2020 at 10:15  | Reason: Not specified

User
Posted 04 Jul 2020 at 10:17
Thanks for the support guys xx

Can you post that link to the hipster pants TG, then we can pop to Asda.
User
Posted 04 Jul 2020 at 10:35
User
Posted 04 Jul 2020 at 18:55
Thank you.

We had the path report today. Good news and not so good. The good news is the surgeon wrote it is a grade 3 yet after the biopsy it was graded 4. Also the MRI pin pointed to a seminal invasion but on the slab it was discovered there was no spread to the seminals at all. All lymph nodes were clear. So I am presuming the T3b is now a T 3a. Still a T3 because it had spread to nearby tissue. The surgeon did say on the phone he thought that he'd got it all out...dependant on psa check of course.

The bad news was that he wrote there was some amount of small cell found mixed in. We have both slipped into a depression somewhat. The biopsy and MRI both showed up a small tumour and the percents were 5% and 1%. No small cell was picked up by the biopsy so we have been bowled over a great deal.
User
Posted 04 Jul 2020 at 19:46
A little bit of small cell carcinoma isn't a problem if it is in a petri dish rather than in the patient.

Good news on the downgrading of everything else.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Aug 2020 at 13:48
Been a bit.....

Had the results of the post op psa test. God, it's a stomach churner isn't it? Anyway it came back as undetectable, so far so good.

Just a quick question, how long do the effects of HT hang about for?
Before the op he had HT to put a brake on things. He had the 3 month implant the beginning of June. So it runs out beginning of Sept. and that will be it.
But the hot flushes and weakness are testing him somewhat. Not helped by the fact he has a stinking cold. I was just wondering how long it stays in your system after finishing.
 
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