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6 days post op

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User
Posted 24 Jan 2023 at 20:37

Hi, my name is Mal and i have just had my prostate removed 6 days ago. Just wanted to introduce myself as  have been reading some of threads and must admit its all quite a lot to still take on board. Will be having catheter removed in a week so will be moving onwards from there hopefully. Trying my best to stay positive.

Mal

User
Posted 24 Jan 2023 at 20:37

Hi, my name is Mal and i have just had my prostate removed 6 days ago. Just wanted to introduce myself as  have been reading some of threads and must admit its all quite a lot to still take on board. Will be having catheter removed in a week so will be moving onwards from there hopefully. Trying my best to stay positive.

Mal

User
Posted 24 Jan 2023 at 23:14

Mal B , I always made sure I was hydrated before the trial without catheter (TWOC). Don't drink less in in order to leak less, it is better to leak than not pass urine and have to have another catheter put in. I took a waterproof cover and towel for the car seat, I never needed them but better to have them rather than want them.

Hope all goes well.

Thanks Chris 

User
Posted 25 Jan 2023 at 00:05

Mal,

I am almost five weeks post-op (robotic assisted radical prostatectomy) and three weeks since the catheter was removed. As others have said, there will be leaks and I have found the NHS Squeezy app useful - it sets you a short series of exercises six times a day to regain full control of the bladder. Already I have seen a huge improvement in my control and feel more confident in myself. Life without the catheter is a big step forward both physically mentally and is another step forward in your recovery. You will find plenty of good advice on the forums from people who clearly understand both the operation and the recovery process. I wish you well on your journey to full recovery.

User
Posted 25 Jan 2023 at 07:21
Mal,

You are on the best site to find any help or advice !!! Also for your partner. The medical point of view, important for sure, is often quite different from the patient point of view in term of recovery and expectation.

User
Posted 27 Jan 2023 at 12:18
An alternative to vaseline is KY jelly which is easier to apply and is safe with rubber catheter tubes
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2023 at 14:00
Mal, if it is that uncomfortable, you might need Instillagel which has some local anaesthetic in it and comes with a small syringe to make putting it in the eye of your penis a bit easier.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2023 at 22:13

Hi Mal, we (well OH) is 1 year from dx and 10 months from RP. The installagel was great and really hits the spot as it were. Our DN sorted it out and it was a godsend. Made the catheter much more comfortable. You will feel so much better once the caterer is out. Take things steady and follow the advice. My OH has made a great recovery. His wound took ages to heal which was more of an inconvenience than anything else.  He was virtually continent once catheter came out and religiously does his pelvic floor exercises with the squeezy app. ED is a different matter, little steps. We are just about to have test no 4 and keeping everthing crossed. Best wishes  x

User
Posted 30 Jan 2023 at 12:57

I'm managing with the KY jelly (Instillagel prescription only) and my god did it make a difference, straight away. Realised its the catheter tube in the end of penis making me so dry. Felt like a lot of needles in the tip and gave me a few sleepless nights. Wish i had known about KY, Instillagel from the start and i'm going to ask Macmillan nurse to consider promoting this issue to men before they leave the hospital as the dryness leaves you in agony.

I have spoken with the Urology nurse at local hospital regards removal of catheter and they are calling me back sometime today so fingers crossed.

A chap who had the exact same operation as me and shared the same ward has been in touch throughout our healing process and is also wanting to move forward.
We are hoping to catch up for a Tea soon as we live reasonably close to each other. We have shared our issues (very similar) and been trying to help whenever we can, Become good pals actually and have shared a few laughs about all this, which has really helped us as we have both had low moments at times but are eager to move onwards and upwards.

Edited by member 01 Feb 2023 at 21:39  | Reason: Not specified

User
Posted 10 Feb 2023 at 09:52

Nick, i must admit i am a little surprised regards my bladder control but nights are better than days so far. It is unsettling to pee unexpectadly during the day as its caught me out a few times whilst out for a walk but working the pfe's as mentioned. Glad you managed to get on top of this. As i've since found out, we all react differently so i can see its going to take time.

Regards a pump, the Macmillan nurse put in a referal form to local health centre and they ordered it for me. Apart from the fact i had to chase it up and find where it was, eventually tracking it down to local pharmacy, i'd have a chat about moving to the next stage as it were.

 

 

Edited by member 14 Feb 2023 at 10:09  | Reason: Not specified

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User
Posted 24 Jan 2023 at 22:01

Good luck Mal for a swift recovery!

User
Posted 24 Jan 2023 at 22:38

Hi Mal,

Best of luck for a swift recovery. Once the catheter is out I am sure you start to feel a lot better I know I did.

It's difficult to give advice because there is not much in your profile. But remember to take some pads with you when you have the catheter removed. 

Kind Regards

Jim

User
Posted 24 Jan 2023 at 23:06

Thanks Decho

User
Posted 24 Jan 2023 at 23:10

Thanks Jim

First time on this site, thanks for your comments. Yes been advised about pads. Trying to appreciate how life changing this can be and hoping to learn from other peoples experiences.

User
Posted 24 Jan 2023 at 23:14

Mal B , I always made sure I was hydrated before the trial without catheter (TWOC). Don't drink less in in order to leak less, it is better to leak than not pass urine and have to have another catheter put in. I took a waterproof cover and towel for the car seat, I never needed them but better to have them rather than want them.

Hope all goes well.

Thanks Chris 

User
Posted 25 Jan 2023 at 00:05

Mal,

I am almost five weeks post-op (robotic assisted radical prostatectomy) and three weeks since the catheter was removed. As others have said, there will be leaks and I have found the NHS Squeezy app useful - it sets you a short series of exercises six times a day to regain full control of the bladder. Already I have seen a huge improvement in my control and feel more confident in myself. Life without the catheter is a big step forward both physically mentally and is another step forward in your recovery. You will find plenty of good advice on the forums from people who clearly understand both the operation and the recovery process. I wish you well on your journey to full recovery.

User
Posted 25 Jan 2023 at 07:21
Mal,

You are on the best site to find any help or advice !!! Also for your partner. The medical point of view, important for sure, is often quite different from the patient point of view in term of recovery and expectation.

User
Posted 25 Jan 2023 at 15:56

Thank you all so much.

I appreciate any information as this is, i feel, going to be a bigger journey than i anticipated, even though i am reading up on relevant info, bit of a learning curve. I hope this helps any one else in future on their journey post op.

Been a week with catheter now and just had a delivery of more day/night bags. Just awaiting letter for removal next week. The Squeezy app is very informative and helpful thankyou.

I had a follow up call today from the Macmillan nurse asking about how i'm coping generally, pain relief if required etc, all so very helpful. Really can't fault any one who has been involved in my personal experience and extremely grateful.

Mal

Edited by member 25 Jan 2023 at 18:50  | Reason: Not specified

User
Posted 25 Jan 2023 at 21:40
As others have said, keep the pads handy and keep doing the PFEs.

I was advised by the continence team to cut out caffeine, and chose to also cut out alcohol. Helped me to get dry in about six weeks. Soon after, I felt confident enough to stop using the pads completely.

User
Posted 26 Jan 2023 at 21:30
Regards the coffee Rob, yes i had virtually given it up a couple of months before my operation. Regards alchohol, i must admit i only really like drinking a few beers at the odd beer festivals we usually attended and dont drink at home. Havn't given this much thought so will look into it.

You are doing very well i must say.

Am i correct in thinking its wrong to do PFEs whilst still having a catheter fitted?

User
Posted 26 Jan 2023 at 21:39
Correct - don't do PFEs while there is a catheter in place.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2023 at 10:39

Hi Mal, 

I am now 14 months post op. and 99% continent.  My body has learned to accept caffeine, red wine (taken with a glass of water) and the occasional small beer.  For some reason, white wine irritates me and causes me to leak a bit, so I have dropped it. We all react differently to various drinks and my point is that, in my case, acceptance of moderate amounts of caffeine, red wine and beer took a little practise. So, to contradict a popular TV warning, please DO  try it at home before your next beer fest. 

Peter

User
Posted 27 Jan 2023 at 12:06

Thanks Lyn, just wanted to be sure as i was doing PFEs a lot before op and didn't want to compromise anything.

Cheers Peter and glad you are getting on top of things.

I am learning so much already and as mentioned, appreciate hearing from you, such an informative site.

I have struggled with the catheter this past couple of days due to dryness to the point of almost calling the hospital i attended but my wife informed me its ok to apply a tiny bit of vaseline and believe me it works. What a relief. Can't wait for it to be removed.
Just been out for a gentle walk for about 15 mins and will keep at it little and often.

 

Edited by member 18 Feb 2023 at 21:45  | Reason: Not specified

User
Posted 27 Jan 2023 at 12:18
An alternative to vaseline is KY jelly which is easier to apply and is safe with rubber catheter tubes
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2023 at 16:48

Mal, Google "can I use vaseline or petroleum jelly in the urethra". Then go to a chemist ( not Boots) and get a tube if instilagel or hydrocaine. KY "may" have similar lubricant properties but doesn't contain anesthetic or antiseptic.

Thanks Chris 

Edited by member 27 Jan 2023 at 16:49  | Reason: Spelling

User
Posted 27 Jan 2023 at 16:57
Mal, be carefull because some products may alter the catheter, and then it is quite difficult to remove it….A friend of us had such an unpleasant experience.
User
Posted 27 Jan 2023 at 17:49
Medical grade KY jelly is safe with catheters and safe for internal use. Vaseline is not safe for internal use.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2023 at 10:23

Mal, they gave me my date for TWOC on discharge from hospital. Especially given that there may still be delays in the post, I would chase them up if your letter doesn't arrive tomorrow.

Peter

User
Posted 29 Jan 2023 at 14:00
Mal, if it is that uncomfortable, you might need Instillagel which has some local anaesthetic in it and comes with a small syringe to make putting it in the eye of your penis a bit easier.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2023 at 22:13

Hi Mal, we (well OH) is 1 year from dx and 10 months from RP. The installagel was great and really hits the spot as it were. Our DN sorted it out and it was a godsend. Made the catheter much more comfortable. You will feel so much better once the caterer is out. Take things steady and follow the advice. My OH has made a great recovery. His wound took ages to heal which was more of an inconvenience than anything else.  He was virtually continent once catheter came out and religiously does his pelvic floor exercises with the squeezy app. ED is a different matter, little steps. We are just about to have test no 4 and keeping everthing crossed. Best wishes  x

User
Posted 30 Jan 2023 at 12:57

I'm managing with the KY jelly (Instillagel prescription only) and my god did it make a difference, straight away. Realised its the catheter tube in the end of penis making me so dry. Felt like a lot of needles in the tip and gave me a few sleepless nights. Wish i had known about KY, Instillagel from the start and i'm going to ask Macmillan nurse to consider promoting this issue to men before they leave the hospital as the dryness leaves you in agony.

I have spoken with the Urology nurse at local hospital regards removal of catheter and they are calling me back sometime today so fingers crossed.

A chap who had the exact same operation as me and shared the same ward has been in touch throughout our healing process and is also wanting to move forward.
We are hoping to catch up for a Tea soon as we live reasonably close to each other. We have shared our issues (very similar) and been trying to help whenever we can, Become good pals actually and have shared a few laughs about all this, which has really helped us as we have both had low moments at times but are eager to move onwards and upwards.

Edited by member 01 Feb 2023 at 21:39  | Reason: Not specified

User
Posted 07 Feb 2023 at 22:46

Mal, I found I was dry at night from day one but it took a while to get daytime continence back. It happened gradually over 6 weeks or so then I just realised I wasn’t thinking about it so much. For me the leaking was one of the worst parts because I couldn’t see an end to it, but it came. 

Coming up to 5 months post op and have been about 98% dry for about 2 months. I do Pilates style exercises every morning for about 20 mins and have started running properly again, as well as regular surfing (started that after about week 9). I drink alcohol of all sorts but not huge amounts. I got aching pains in the barse (technical term for the perineum area) which the surgeon said was down to being too enthusiastic with the PFEs! He was right so I pulled back from doing so many but clearly it helped get me dry pretty quickly.

Everyone is different so listen to your surgeon, nurse and your own body. Don’t push things too quickly but enjoy the small victories. If you were fit and active before, I imagine it makes recovery easier.

Sorry you’ve found yourself on here but it’s the best place for support. 

Good luck with what comes next and all the best for a quick recovery.

Nick

User
Posted 08 Feb 2023 at 09:55

Hi Nick, glad to here you are doing so well on your road to recovery - surfing! Wow good on you. Regards alchohol, i'm just on the herbal tea currently with a good cuppa first thing each morning. Good to here your out running Nick, boosts my confidence a bit as i do enjoy getting out cycling even though its just with the younglings nowadays.

I know its early days but so far have had dry nights apart from the very first night. Yes i must admit, i keep having little squirts throughout each day and put this down to moving around so much, bending, squatting etc. I'm having to train my pelvic floor muscles to respond before doing anything and have to remind myself all the time to do it. Currently following the squeezy app as advised by Probbo and this has proven very usefull so far.

Ive been concerned about little fella and erections from before the operation (Da Vinci) and surprisingly woke up around 3.00am for a pee with a good 3/4 erection! First time post op thats happened - fingers crossed. Yes my perenium feels like ive done a 20 mile bike ride so just taking things steady,

I opened the pack i received from nhs (Macmillan nurse) regards a Stoma 2 penis pump kit (hand pump not battery type) last night and, after initially being confused-amused-concerned by the whole setup, can see thats going to be a whole new journey, especially as i have been reading mixed responses to it.

Staying positive and getting more gentle walks in, squeeze - release.

9/2/23  -  Not sure it its a combination of the amount of water i'm drinking and the cold weather but peeing a lot today. Good thing is i can feel it and hold for a short spell before going to toilet as opposed to just peeing myself!

Edited by member 09 Feb 2023 at 16:08  | Reason: Not specified

User
Posted 09 Feb 2023 at 19:17

Great that you have such good bladder control so early. I found the wetting myself bit pretty upsetting, especially when out and about but it definitely improved fairly quickly. 

And excellent that you are already ‘standing to attention’! I’m nowhere near that, 5 months in. I haven’t spoken to anyone about pumps, maybe that’s for the next consultant appointment at the end of the month.

good luck!

Nick

User
Posted 09 Feb 2023 at 21:23

I am thankful that I have a hand pump rather than battery. Feels like I am in control. To get a natural semi erection so early bodes well for you.

User
Posted 10 Feb 2023 at 09:52

Nick, i must admit i am a little surprised regards my bladder control but nights are better than days so far. It is unsettling to pee unexpectadly during the day as its caught me out a few times whilst out for a walk but working the pfe's as mentioned. Glad you managed to get on top of this. As i've since found out, we all react differently so i can see its going to take time.

Regards a pump, the Macmillan nurse put in a referal form to local health centre and they ordered it for me. Apart from the fact i had to chase it up and find where it was, eventually tracking it down to local pharmacy, i'd have a chat about moving to the next stage as it were.

 

 

Edited by member 14 Feb 2023 at 10:09  | Reason: Not specified

 
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