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HELP! One week until surgery!

User
Posted 30 Nov 2021 at 14:21

Hi everyone 


My husband just had a phone call to say his RARP will be in one week's time! Shocker! We have NOTHING prepared! This has come as a bolt out of the blue to us as we were told we would be given 2 weeks advance notice for surgery. Have you any tips or advice for pre/post surgery? Is there anything we need to buy? What do we need for recovery etc? I'm sure this has been asked a thousand times but would really appreciate any quick answers as we will have to isolate from Friday so I need to get everything prepared.


Also, what is the situation like with drinking alcohol post op? Obviously this is not the best time of year to be thinking about abstaining from drink. My husband is panicking he won't be able to enjoy a beer at Christmas! 


Any advice/thoughts gratefully received! 

User
Posted 30 Nov 2021 at 15:05
Shopping list

- Bucket (to stand the night bag in)
- waterproof sheet (Dunelm do a soft feel one) or puppy training pads for when the catheter comes out
- tracksuit bottoms / joggers = preferably in sweatshirt material with a drawstring waist & in a dark colour - M&S sell them
- pants (proper ones, not boxer shorts) one size larger than he usually wears - penis and scrotum may be very swollen afterwards so the additional support will be welcome
- clarify whether the hospital will provide local anaesthetic gel for the eye of his penis; the catheter tube can rub. If they don't provide, buy from pharmacy before he goes in for op
- a couple of packs of men's incontinence pads - Tena for men are often on BOGOF at most supermarkets. Don't buy loads yet because it may turn out he doesn't need them or that your local district nursing team will provide

Whether or not he can drink at christmas will depend somewhat on how incontinent he is - if everything he downs comes straight out the other end, he isn't going to enjoy it much. If he is dry post-op, he may just find that alcohol impedes his control a little bit and so drinking at home seems fine but he doesn't want to go out to a pub. Having said that, he is unlikely to be going out anywhere over Christmas for more than a short walk or visit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Nov 2021 at 15:30

Lyn as always has all the bases covered.


Just remember he needs to take it very easy for several weeks and definitely no lifting.


I enjoyed a nice glass of wine or 2 from about a week post op.


Good luck and hope all goes well 

User
Posted 30 Nov 2021 at 16:19

Hi Robot A,


I was over the moon to get a fast date which was the 16th December 2016.   I wrote off Christmas that year.   Not that we ever do that much at Christmas anyway and don't have visitors.  Although we did visit other people over the period even though I had a catheter and urine bag strapped to my leg.  I just sat there.  had a cup of coffee a chat and left, and no-one knew as far as I know.


He should be wearing pads by then and if he bought a big full underwear one and wears baggy pants he might get away with drinking a bit moer.   Although I wouldn't.  Leakage starts and you don't know it's happening until the pad is full and it's dripping down your leg and you might squelch.  You get an idea that the pad suddenly weighs quite a bit more.   All this amused me at the time although we all have our sense of humour.


Lyn has covered a list of needs although I was glad I took some earplugs as there was a big snorer in the ward.  As well as various beeping machines.   I think I only made sure I had a dressing gown.  Although a stock of sandwiches would have been good as the food was awful and I didn't read any of the mags I bought.   Two nights in the hospital and out.  If it hadn't been for the pelvic blood drain I'd have left earlier but it was still leaking quite a bit 24hrs later.


I assume he's had a pre-op.  I was offered a date with only 8 days notice and the pre-op was 5 days before the op.  The MRSA check needed 5 days if I failed.  Fortunately I didn't.


I did a biggish write up of it on the link below.  You'll need to go to page 2 for the 'day of op'.


https://sites.google.com/site/myprostateprobleminlancashire/


All the best, Peter


 

Edited by member 30 Nov 2021 at 16:32  | Reason: Not specified

User
Posted 30 Nov 2021 at 16:58

I had my op just over 3 weeks ago. Previous posts have told you what you need to know but if I may add from my experience. . Be prepared for the catheter to bypass a little. I was concerned about this but was told it is normal. So, you may need pads from the start to catch it. Bit crowded with the catheter tube in there as well. Also, I was advised to use a healing barrier cream on the end of my penis to prevent soreness from urine. I am still incontinent and being at home all the time, am preferring pull up pants to pads. If your man goes that way, make sure he is at the top end of size, rather than entry level. If they are too big, the leg seals won't work so well. Lyn mentioned swelling of penis and scrotum. I was also heavily swollen around my anus The pants (really designed for urine and faecal incontinence) , helped me with a soft landing for that. All back to normal size now. 


Good luck!!! 


 

Edited by member 30 Nov 2021 at 16:59  | Reason: Typo

User
Posted 30 Nov 2021 at 18:03

I am now about 13 weeks post RARP


 


I was surprised at the amount of swelling of scrotum! Certainly meant that any thought of sleeping on my side was out of the question. Definitely flat on back propped up was most comfortable.


 


When sitting for a while (TV in evening say) I found taking the bag off my leg and using a night stand meant I could raise my legs with the bag on the floor


 


If you do not have extra thigh straps look at this site https://www.greatbearhealthcare.co.uk/products/leg-bag-straps-and-holders/


They will send you free samples very quickly. Note you can ask for more than one type I got three extra sent Large, medium and adjustable. These are great and having spares means you can shower and replace with dry straps. I took the bottom strap off when showering so only one gets wet.


 


It takes a little getting used to but I found the catheter not too bad and although it sounds a longtime at first the time with catheter soon passes. Once removed make sure the pelvic floor exercises are done religiously - they make a big difference and I am sure the reason I was dry very quickly.


 


The NHS pads supplied do a job but large not comfortable. I found Tena2 were ample once catheter removed - but everyone different so don’t buy lots until you know what is definitely needed.


 


Whatever you do do not overdo the exercise - build up slowly


 


Hope all goes well.

User
Posted 30 Nov 2021 at 18:57
As well as all above I was told to start pelvic floor exercises ASAP when diagnosed so start now if not already. Then only stop while catheter is in.

Also I was told atleast walk briskly half hour per day in the week before opp. I had six weeks so started then, also on day of op. I got up at 4am to get that in but was doing more like an hour. I haven't heard anyone else mention this though.

After opp had to walk 25 laps of corridor prior to discharge the following lunchtime. Not easy but worth it to get bowels going.

I had a 1 hour taxi journey then short flight to get home three days post opp. The taxi journey was awful. You need a very smooth considerate driver. Flight was fine.

Good luck with op and recovery

Cheers
Bill
User
Posted 01 Dec 2021 at 21:00

best of luck for the surgery.


Lyn has most bases covered here I think.


On the trouser front I found these from Amazon really good ‘


Canterbury Men's Open Hem Stadium Pants’


it was a tip from another patient and really saved my bacon a few times as I could access and service the catheter bag via the full length zip which was a godsend. Could pretty much empty it anywhere in seconds. Plus they are nice and warm for winter. 


im a boxer shorts wears but I got supportive pants post surgery as they hold everything in place with the catheter.


Cheers


simon

User
Posted 02 Dec 2021 at 01:54

You have already taken the single most valuable step - reaching out (how I hate that Americanism but, in this instance, it seems entirely appropriate) to those who have already trodden this path. The PCUK website is undoubtedly the most comprehensive source of factual information for anyone embarking upon this journey, but the moral support and practical advice offered by members of this community, based upon their personal experience, is pure gold dust!

I am a 72-year-old widower, sadly without the support of my life partner, and have found decision-making regarding treatment options particularly difficult. However much research one may undertake, each patient journey, whilst perhaps not altogether unique, is impossible to foresee in detail: hospital pre-op and discharge information, however comprehensive, cannot encompass every eventuality. And few who compile such information will actually have been on the receiving end!

I am now 8 days post-RARP, performed at a teaching hospital a considerable distance from where I live. The process was pretty slick, I have to say, but not without its traps for the unwary.  There were three patients from the same operating list in our 4-bed ward bay, which proved rather fortunate: the nursing staff, whilst unfailingly courteous and attentive, were somewhat difficult to understand: fortunately, as we were each able to overhear the discharge instructions offered to our two colleagues, we were subsequently able to derive a consensus interpretation about which we were all reasonably confident.


We were all released back into the wild the day following surgery. We were never able to discover why one of us was given an appointment to return for TWOC after a week, another after 10 days and myself after two weeks. Which brings me to my FIRST PIECE OF ADVICE: check that your partner is discharged with plumbing supplies sufficient to last until his catheter is removed. I was initially given only 10 single-use night bags (no drain tap, so impossible to re-use) for a 14-day period. Policies vary regarding the provision of incontinence disposables: a friend who lives 3 miles from me, but in a different county, had been discharged from hospital with more pads and pants than he knew what to do with, whilst I was merely directed to the nearest Tesco (out of stock, sadly!). A  degree of leakage around the catheter appears to be inevitable, so do ensure that your partner takes some pads into hospital with him: it is so undignified to find oneself leaving evidence of one's presence along the hospital corridor or, in my case, on the taxi floor!


My SECOND PIECE OF ADVICE is to be prepared for the unexpected, that which nobody has warned you about, and ensure that you are clear as to whom to contact 24/7 when it arises; should you be advised, as was I, that your first port of call should be the District Nursing service, try not to laugh but insist upon being given the telephone number of an Urology Nurse Specialist or, if they work only 9-5, the Urology Ward which, in these uncertain times, may not the ward used for "green" elective surgical cases.


In my case, the first such event arose 3 days post-op, and took the form of frequent (at 3-minute intervals), painful badder spasms, accompanied by gross haematuria. No, nothing in my copious information pack about bladder spasms and, yes, it was late on a Friday afternoon!  Three different voicemail greetings, promising a return call the following Monday morning, seemed of rather limited value. Fortunately, the GP Out-of-Hours service was eventually able to reassure me that I wasn't about to exsanguinate, and to advise that I should attend A&E at the hospital where the operation had been performed (far easier said than done!) if the issue hadn't resolved within a couple of days (which, after passing a large blood clot the following day, it did).


Today, my wound pain having more or less settled, I have been experiencing marked perineal pain such that I am far more comfortable standing than sitting, together with a feeling of having been kicked in the goolies by a large horse. Once again, no mention of this in my voluminous information pack, but a quick review of this forum was sufficient to reassure me that this was not an unusual phenomenon (albeit, it seems, one that I may need to get used to for a while).


Best wishes to your man!


David

User
Posted 02 Dec 2021 at 06:03

David points here are on point. 


one of the reasons I picked up black trousers where they obscure leakage better than most. Thankfully this wasn’t too much of a problem. Day 4 I encounters a partial blockage and was. Dry concerned  as it was a Sunday so urology nurse was offline. My surgeon was epic as responds to email pretty much anytime. I ping’d him and he suggested A&E as closest. I was mindful I letting non urology nurses near my band new anastomoses (urethra join) so called my good ladies nurse sister for advice. sip water and move about is what they offered. I came on this discussion group and a stroke of genius was suggested…lay on one’s side as any clot blocking the catheter value in your bladder might dislodge due to gravity….this worked and fixed the problem 😵‍💫😎


I had a few partial internal catheter value partial blockages but each time was able to manage by understanding how the retaining balloon inside the bladder works and how any clot debris interacts with it. I’d recommend to avoid caffeine and pretty much stay very much hydrated with water or herbal tea or peppermint for the first few weeks. 


lastly I also found sitting very uncomfortable so had set myself up on the sofa in a reclining position with lots of cushions and a tena pad for reassurance. Worked really well plus directly in front of the tv which apart from daily 2km walks was my friend 🤓


hope this helps but do please shout if you have any questions on this journey as I’m sure any of us will be more than willing to help where we can.


simon

User
Posted 02 Dec 2021 at 11:43

I hope that you are luckier than the other posters on here and have an experience more like mine.


* After the original journey home, which was a bit of a nightmare - had to stop off at a big supermarket to use the loo as my bag was full, I didn't have much problems with the catheter. My catheter only leaked around the sides when passing motions. I had a much worse experience from the biopsy, when I needed a catheter because I react to general anaesthetic. There I had a blood clot blockage that resulted in a trip to A&E. Not an experience I would like to repeat, as no-one would take responsibility (A&E and Urology arguing over who should take charge while I was in agony). I guess the few issues I had after the RARP were easy after dealing with that.


* Others have described being very painful in the nether regions, but after the first day I found that the addition of a cushion underneath allowed me to sit on chairs with only a modicum of discomfort. Techguy had Retzius, so pain in that region is to be expected.


* I had very little incontinence (I had and still have urgency problems, but pretty much like I had before the op, so I'm used to dealing with them). Never had a leak at night, and never suffered from leaks when getting up or sitting down, or similar. Ended up with far too many pads, but then better safe than sorry.


* My main piece of advice is, that if you are worried about something, or experiencing unexpected problems, don't hang around, speak to someone as quickly as possible. I've always found the Specialist Nurses the best first port of call, but some are more available than others (I've had them for other problems as well, so a fair bit of experience in this area).

Edited by member 02 Dec 2021 at 11:44  | Reason: Not specified

User
Posted 11 Dec 2021 at 12:02

Fantastic news! The best Xmas present ever and I suspect the catheter should be out just before Xmas day?


Shout if you need anything and wish you a rapid recovery 🍻🎄🍾

Show Most Thanked Posts
User
Posted 30 Nov 2021 at 15:05
Shopping list

- Bucket (to stand the night bag in)
- waterproof sheet (Dunelm do a soft feel one) or puppy training pads for when the catheter comes out
- tracksuit bottoms / joggers = preferably in sweatshirt material with a drawstring waist & in a dark colour - M&S sell them
- pants (proper ones, not boxer shorts) one size larger than he usually wears - penis and scrotum may be very swollen afterwards so the additional support will be welcome
- clarify whether the hospital will provide local anaesthetic gel for the eye of his penis; the catheter tube can rub. If they don't provide, buy from pharmacy before he goes in for op
- a couple of packs of men's incontinence pads - Tena for men are often on BOGOF at most supermarkets. Don't buy loads yet because it may turn out he doesn't need them or that your local district nursing team will provide

Whether or not he can drink at christmas will depend somewhat on how incontinent he is - if everything he downs comes straight out the other end, he isn't going to enjoy it much. If he is dry post-op, he may just find that alcohol impedes his control a little bit and so drinking at home seems fine but he doesn't want to go out to a pub. Having said that, he is unlikely to be going out anywhere over Christmas for more than a short walk or visit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Nov 2021 at 15:30

Lyn as always has all the bases covered.


Just remember he needs to take it very easy for several weeks and definitely no lifting.


I enjoyed a nice glass of wine or 2 from about a week post op.


Good luck and hope all goes well 

User
Posted 30 Nov 2021 at 16:19

Hi Robot A,


I was over the moon to get a fast date which was the 16th December 2016.   I wrote off Christmas that year.   Not that we ever do that much at Christmas anyway and don't have visitors.  Although we did visit other people over the period even though I had a catheter and urine bag strapped to my leg.  I just sat there.  had a cup of coffee a chat and left, and no-one knew as far as I know.


He should be wearing pads by then and if he bought a big full underwear one and wears baggy pants he might get away with drinking a bit moer.   Although I wouldn't.  Leakage starts and you don't know it's happening until the pad is full and it's dripping down your leg and you might squelch.  You get an idea that the pad suddenly weighs quite a bit more.   All this amused me at the time although we all have our sense of humour.


Lyn has covered a list of needs although I was glad I took some earplugs as there was a big snorer in the ward.  As well as various beeping machines.   I think I only made sure I had a dressing gown.  Although a stock of sandwiches would have been good as the food was awful and I didn't read any of the mags I bought.   Two nights in the hospital and out.  If it hadn't been for the pelvic blood drain I'd have left earlier but it was still leaking quite a bit 24hrs later.


I assume he's had a pre-op.  I was offered a date with only 8 days notice and the pre-op was 5 days before the op.  The MRSA check needed 5 days if I failed.  Fortunately I didn't.


I did a biggish write up of it on the link below.  You'll need to go to page 2 for the 'day of op'.


https://sites.google.com/site/myprostateprobleminlancashire/


All the best, Peter


 

Edited by member 30 Nov 2021 at 16:32  | Reason: Not specified

User
Posted 30 Nov 2021 at 16:58

I had my op just over 3 weeks ago. Previous posts have told you what you need to know but if I may add from my experience. . Be prepared for the catheter to bypass a little. I was concerned about this but was told it is normal. So, you may need pads from the start to catch it. Bit crowded with the catheter tube in there as well. Also, I was advised to use a healing barrier cream on the end of my penis to prevent soreness from urine. I am still incontinent and being at home all the time, am preferring pull up pants to pads. If your man goes that way, make sure he is at the top end of size, rather than entry level. If they are too big, the leg seals won't work so well. Lyn mentioned swelling of penis and scrotum. I was also heavily swollen around my anus The pants (really designed for urine and faecal incontinence) , helped me with a soft landing for that. All back to normal size now. 


Good luck!!! 


 

Edited by member 30 Nov 2021 at 16:59  | Reason: Typo

User
Posted 30 Nov 2021 at 18:03

I am now about 13 weeks post RARP


 


I was surprised at the amount of swelling of scrotum! Certainly meant that any thought of sleeping on my side was out of the question. Definitely flat on back propped up was most comfortable.


 


When sitting for a while (TV in evening say) I found taking the bag off my leg and using a night stand meant I could raise my legs with the bag on the floor


 


If you do not have extra thigh straps look at this site https://www.greatbearhealthcare.co.uk/products/leg-bag-straps-and-holders/


They will send you free samples very quickly. Note you can ask for more than one type I got three extra sent Large, medium and adjustable. These are great and having spares means you can shower and replace with dry straps. I took the bottom strap off when showering so only one gets wet.


 


It takes a little getting used to but I found the catheter not too bad and although it sounds a longtime at first the time with catheter soon passes. Once removed make sure the pelvic floor exercises are done religiously - they make a big difference and I am sure the reason I was dry very quickly.


 


The NHS pads supplied do a job but large not comfortable. I found Tena2 were ample once catheter removed - but everyone different so don’t buy lots until you know what is definitely needed.


 


Whatever you do do not overdo the exercise - build up slowly


 


Hope all goes well.

User
Posted 30 Nov 2021 at 18:27
Thanks SO much for all your speedy responses. Really means a lot. That list is great Lyn. Thanks. Will get to Dunhelm Mill tomorrow! And Mike my other half will be pleased to hear that you had a glass of wine a week post op! I think for him that's what he's bothered about as he likes a drink at Xmas. In his head, he wasn't having the op until Jan, so he was planning to have a nice Xmas and let his hair down a bit and then knock it all the head in Jan in time for the surgery. In many ways he's really lucky to have the surgery brought forward but it's just taken us by surprise and is a bit of a shock to the system. We've got a little boy too so thinking about all the Xmas planning as well! Thanks so much everyone for taking the time to reply. Really really appreciate you sharing your experiences
User
Posted 30 Nov 2021 at 18:57
As well as all above I was told to start pelvic floor exercises ASAP when diagnosed so start now if not already. Then only stop while catheter is in.

Also I was told atleast walk briskly half hour per day in the week before opp. I had six weeks so started then, also on day of op. I got up at 4am to get that in but was doing more like an hour. I haven't heard anyone else mention this though.

After opp had to walk 25 laps of corridor prior to discharge the following lunchtime. Not easy but worth it to get bowels going.

I had a 1 hour taxi journey then short flight to get home three days post opp. The taxi journey was awful. You need a very smooth considerate driver. Flight was fine.

Good luck with op and recovery

Cheers
Bill
User
Posted 30 Nov 2021 at 19:02

A packet of his favourite biscuits. 


Thanks Chris

User
Posted 01 Dec 2021 at 21:00

best of luck for the surgery.


Lyn has most bases covered here I think.


On the trouser front I found these from Amazon really good ‘


Canterbury Men's Open Hem Stadium Pants’


it was a tip from another patient and really saved my bacon a few times as I could access and service the catheter bag via the full length zip which was a godsend. Could pretty much empty it anywhere in seconds. Plus they are nice and warm for winter. 


im a boxer shorts wears but I got supportive pants post surgery as they hold everything in place with the catheter.


Cheers


simon

User
Posted 01 Dec 2021 at 22:13

My husband had his op beginning of July . Most of what Lynn has advised is very good. Mine went caffeine free and still is as caffeine is a bladder irritant . He now enjoys a glass of wine but beer is not ideal and he avoids it. 
as a wife my really low point was the day the catheter came out . What went in came straight out and I couldn’t imagine it ever getting better . But small improvements day any day and the squeeze app remind him to do those vital pelvic floor exercises. One of our difficult issues was continual discharge from drain and getting district nurses in to change the dressings.


Looking back the first 6 weeks weren’t easy but he got the all clear so it was all worth it.


good luck to you both 

User
Posted 02 Dec 2021 at 01:54

You have already taken the single most valuable step - reaching out (how I hate that Americanism but, in this instance, it seems entirely appropriate) to those who have already trodden this path. The PCUK website is undoubtedly the most comprehensive source of factual information for anyone embarking upon this journey, but the moral support and practical advice offered by members of this community, based upon their personal experience, is pure gold dust!

I am a 72-year-old widower, sadly without the support of my life partner, and have found decision-making regarding treatment options particularly difficult. However much research one may undertake, each patient journey, whilst perhaps not altogether unique, is impossible to foresee in detail: hospital pre-op and discharge information, however comprehensive, cannot encompass every eventuality. And few who compile such information will actually have been on the receiving end!

I am now 8 days post-RARP, performed at a teaching hospital a considerable distance from where I live. The process was pretty slick, I have to say, but not without its traps for the unwary.  There were three patients from the same operating list in our 4-bed ward bay, which proved rather fortunate: the nursing staff, whilst unfailingly courteous and attentive, were somewhat difficult to understand: fortunately, as we were each able to overhear the discharge instructions offered to our two colleagues, we were subsequently able to derive a consensus interpretation about which we were all reasonably confident.


We were all released back into the wild the day following surgery. We were never able to discover why one of us was given an appointment to return for TWOC after a week, another after 10 days and myself after two weeks. Which brings me to my FIRST PIECE OF ADVICE: check that your partner is discharged with plumbing supplies sufficient to last until his catheter is removed. I was initially given only 10 single-use night bags (no drain tap, so impossible to re-use) for a 14-day period. Policies vary regarding the provision of incontinence disposables: a friend who lives 3 miles from me, but in a different county, had been discharged from hospital with more pads and pants than he knew what to do with, whilst I was merely directed to the nearest Tesco (out of stock, sadly!). A  degree of leakage around the catheter appears to be inevitable, so do ensure that your partner takes some pads into hospital with him: it is so undignified to find oneself leaving evidence of one's presence along the hospital corridor or, in my case, on the taxi floor!


My SECOND PIECE OF ADVICE is to be prepared for the unexpected, that which nobody has warned you about, and ensure that you are clear as to whom to contact 24/7 when it arises; should you be advised, as was I, that your first port of call should be the District Nursing service, try not to laugh but insist upon being given the telephone number of an Urology Nurse Specialist or, if they work only 9-5, the Urology Ward which, in these uncertain times, may not the ward used for "green" elective surgical cases.


In my case, the first such event arose 3 days post-op, and took the form of frequent (at 3-minute intervals), painful badder spasms, accompanied by gross haematuria. No, nothing in my copious information pack about bladder spasms and, yes, it was late on a Friday afternoon!  Three different voicemail greetings, promising a return call the following Monday morning, seemed of rather limited value. Fortunately, the GP Out-of-Hours service was eventually able to reassure me that I wasn't about to exsanguinate, and to advise that I should attend A&E at the hospital where the operation had been performed (far easier said than done!) if the issue hadn't resolved within a couple of days (which, after passing a large blood clot the following day, it did).


Today, my wound pain having more or less settled, I have been experiencing marked perineal pain such that I am far more comfortable standing than sitting, together with a feeling of having been kicked in the goolies by a large horse. Once again, no mention of this in my voluminous information pack, but a quick review of this forum was sufficient to reassure me that this was not an unusual phenomenon (albeit, it seems, one that I may need to get used to for a while).


Best wishes to your man!


David

User
Posted 02 Dec 2021 at 06:03

David points here are on point. 


one of the reasons I picked up black trousers where they obscure leakage better than most. Thankfully this wasn’t too much of a problem. Day 4 I encounters a partial blockage and was. Dry concerned  as it was a Sunday so urology nurse was offline. My surgeon was epic as responds to email pretty much anytime. I ping’d him and he suggested A&E as closest. I was mindful I letting non urology nurses near my band new anastomoses (urethra join) so called my good ladies nurse sister for advice. sip water and move about is what they offered. I came on this discussion group and a stroke of genius was suggested…lay on one’s side as any clot blocking the catheter value in your bladder might dislodge due to gravity….this worked and fixed the problem 😵‍💫😎


I had a few partial internal catheter value partial blockages but each time was able to manage by understanding how the retaining balloon inside the bladder works and how any clot debris interacts with it. I’d recommend to avoid caffeine and pretty much stay very much hydrated with water or herbal tea or peppermint for the first few weeks. 


lastly I also found sitting very uncomfortable so had set myself up on the sofa in a reclining position with lots of cushions and a tena pad for reassurance. Worked really well plus directly in front of the tv which apart from daily 2km walks was my friend 🤓


hope this helps but do please shout if you have any questions on this journey as I’m sure any of us will be more than willing to help where we can.


simon

User
Posted 02 Dec 2021 at 07:18

Had mine 4 weeks tomorrow and don't think there's much I can add.


Wish I had seen Lynn's list prior to my hospital stay as it ticks all the boxes.


I had a cystogram 2 week after which unfortunately showed a leak from my urethra meaning the cathater had to stay in another 2 week. (Back tomorrow) As reccomended on here got some Instagel (available from most good chemists, and some bad ones) to put on the eye of your old boy due to the constant rubbing / friction from the tube. Get some now, not after.


Was given half a dozen night bags on my discharge but had to get more due to extended stay of cathater.


Books, Netflix, and Amazon prime have seen me through though if this is a taste of retirement I need to find myself a hobby.


I got pants rather than pads as you will have the occasional squirt. Again, as advised on here, it's normal so don't panic.


That's my tuppence worth so go with the flow and chill. Come back on here if you come across any queries going forward.


Good luck,


Nick.

User
Posted 02 Dec 2021 at 11:43

I hope that you are luckier than the other posters on here and have an experience more like mine.


* After the original journey home, which was a bit of a nightmare - had to stop off at a big supermarket to use the loo as my bag was full, I didn't have much problems with the catheter. My catheter only leaked around the sides when passing motions. I had a much worse experience from the biopsy, when I needed a catheter because I react to general anaesthetic. There I had a blood clot blockage that resulted in a trip to A&E. Not an experience I would like to repeat, as no-one would take responsibility (A&E and Urology arguing over who should take charge while I was in agony). I guess the few issues I had after the RARP were easy after dealing with that.


* Others have described being very painful in the nether regions, but after the first day I found that the addition of a cushion underneath allowed me to sit on chairs with only a modicum of discomfort. Techguy had Retzius, so pain in that region is to be expected.


* I had very little incontinence (I had and still have urgency problems, but pretty much like I had before the op, so I'm used to dealing with them). Never had a leak at night, and never suffered from leaks when getting up or sitting down, or similar. Ended up with far too many pads, but then better safe than sorry.


* My main piece of advice is, that if you are worried about something, or experiencing unexpected problems, don't hang around, speak to someone as quickly as possible. I've always found the Specialist Nurses the best first port of call, but some are more available than others (I've had them for other problems as well, so a fair bit of experience in this area).

Edited by member 02 Dec 2021 at 11:44  | Reason: Not specified

User
Posted 02 Dec 2021 at 13:00
Thanks everyone! All of your advice and personal experiences are so so useful! Really appreciate you all taking the time to get back to me. It is so reassuring
User
Posted 11 Dec 2021 at 09:49

Just wanted to pop back on the thread to say my husband had the op on Wednesday and the surgeon said it was a success! He managed to spare the nerves on the left side and part of the right. I’m so relieved! I know we still  have a long way to go but I wanted to thank you all for your kindness and advice on this journey. This forum is wonderful and it’s been so helpful to us in the last few months, as have the nurses on the helpline. The first night after discharge my OH’s catheter bag wasn’t filling up so I was here on the forum at 4am frantically searching for some advice that I’d seen Lyn give someone about how to clear blockages and get it working again! 🤣 Luckily after drinking lots of water and raising the bag up, things seemed to get moving! So we’re over the hump now and wanted to thank you all for being here along the way! 😘 X

User
Posted 11 Dec 2021 at 10:12

Good to hear from you, and glad things are going well. Keep us informed, hopefully for many years to come. The long stories going back years help people understand how to live with this disease hopefully yours will be a long happy story.

Dave

User
Posted 11 Dec 2021 at 12:02

Fantastic news! The best Xmas present ever and I suspect the catheter should be out just before Xmas day?


Shout if you need anything and wish you a rapid recovery 🍻🎄🍾

 
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