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Continence battle.

User
Posted 05 Apr 2021 at 17:00

Hi

I’m four weeks post opp  robotic surgery and my continence has got worse,I’ve went from 3 pads daily to 4 and have in the last ten days passed a lot of debris like old blood clots.

Has anyone experienced this or I’m worrying to much? any advice and guidance would be greatly appreciated.

Im three weeks post catheter removal ...maybe I’m panicking.

Alistair.

Edited by member 10 Apr 2021 at 16:15  | Reason: Not specified

User
Posted 05 Apr 2021 at 19:59

Passing old blood clots sounds like it could be clearing out.  It shouldn't be getting worse but I'd give it longer as the first couple of months can be a roller coaster experience. Are you increasing exercise or doing something you weren't doing before.  The leak can be so slight you don't notice and every step or movement can release a tiny bit more. Until it heals and your sphincter gets stronger and stronger.

User
Posted 05 Apr 2021 at 21:15
The fact you have some control is positive, keep drinking! No alcohol or caffeine. When you do have s proper pee practice stopping it, that's s great way to validate you are doing the PFE s correctly.
User
Posted 10 Apr 2021 at 23:29
Swallow your pride, wear pads that can cope and get on with life. I found that for years after the medics considered me fully continent I could have significant mishaps especially if alchahol was involved. Pretty much bomb proof 5.5 years later but I will still be careful if out partying - not that that happens much these days!

It's important you get exercise and stress your control that is how your body will re learn to control it. You can't do that without accidents now and again.

Oh and if it'd not better after a few months get a referral to the incontinence clinic, by the time my appointment came through it had just about sorted itself.

User
Posted 26 Apr 2021 at 08:49

Golly, reading that takes me back eighteen months to my post TWOC period. Like you, I despaired at times that nothing seemed to change, that I might end up wearing x number of pads per day. I was recommended to try the DribbleStop clamp, by my surgeon and by the Urology Physio. It worked a treat!  Just wear it for half an hour while you go out for a lovely, dry and leak-free walk. Or attend something you've been missing for fear of embarassment  -  choir rehearsal, in my case. It did wonders for morale, and that's the magic factor that gets you through. Now, eighteen months on, I wear a 'shield' (Level 0) on occasions but otherwise pretty much dry. And, happy to say, so far all PSA's undetectable.

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User
Posted 05 Apr 2021 at 19:59

Passing old blood clots sounds like it could be clearing out.  It shouldn't be getting worse but I'd give it longer as the first couple of months can be a roller coaster experience. Are you increasing exercise or doing something you weren't doing before.  The leak can be so slight you don't notice and every step or movement can release a tiny bit more. Until it heals and your sphincter gets stronger and stronger.

User
Posted 05 Apr 2021 at 20:28

Thank you for your reply Peter,

Today I’ve drank a lot and have only had one proper pee the rest of the time I’m feeling leakage on every move and have had to use five pads today. There is still a lot of debris coming through and I wonder if this is affecting my bladder sphincter, I was able to have some control getting up from sitting or laying but that’s not good now.

I haven’t increased my exercise any just having a thirty minute walk each day and not doing anything strenuous so maybe when the debris clears things might improve.

I’m trying to stay positive.

Alistair.

User
Posted 05 Apr 2021 at 21:15
The fact you have some control is positive, keep drinking! No alcohol or caffeine. When you do have s proper pee practice stopping it, that's s great way to validate you are doing the PFE s correctly.
User
Posted 10 Apr 2021 at 15:19

 

Well looks like most debris has passed now and just seeing an odd piece, my continence hasn’t  got any worse or any better but I don’t leak when laying down or sitting still so having a decent pee several  times through the night.

I aim for a thirty minute walk every day, do the Kegel exercises and try to keep  moving about  the house but  moving about is when I leak so I find that quite off putting to say the least.

Anyway the fight goes on and hopefully get a sign of improvement soon I know I’m only just over three weeks post catheter so need to be patient.

thanks again for all advise and comments.

Edited by member 10 Apr 2021 at 15:31  | Reason: Not specified

User
Posted 10 Apr 2021 at 23:29
Swallow your pride, wear pads that can cope and get on with life. I found that for years after the medics considered me fully continent I could have significant mishaps especially if alchahol was involved. Pretty much bomb proof 5.5 years later but I will still be careful if out partying - not that that happens much these days!

It's important you get exercise and stress your control that is how your body will re learn to control it. You can't do that without accidents now and again.

Oh and if it'd not better after a few months get a referral to the incontinence clinic, by the time my appointment came through it had just about sorted itself.

User
Posted 26 Apr 2021 at 08:49

Golly, reading that takes me back eighteen months to my post TWOC period. Like you, I despaired at times that nothing seemed to change, that I might end up wearing x number of pads per day. I was recommended to try the DribbleStop clamp, by my surgeon and by the Urology Physio. It worked a treat!  Just wear it for half an hour while you go out for a lovely, dry and leak-free walk. Or attend something you've been missing for fear of embarassment  -  choir rehearsal, in my case. It did wonders for morale, and that's the magic factor that gets you through. Now, eighteen months on, I wear a 'shield' (Level 0) on occasions but otherwise pretty much dry. And, happy to say, so far all PSA's undetectable.

User
Posted 28 Apr 2021 at 17:19

Thanks for your reply Brian

I’m now seven week’s post opp and since receiving a drinking schedule from the incontinence nurse a week ago my leakage has improved and has given me reassurance I’m making progress  (all be it small) which is great.

My aim is to be where you are Brian after 18 months so your story encourages me a lot ...thank you for sharing it.

 

 

User
Posted 29 Apr 2021 at 08:20

Good luck, and be patient! But don't be afraid to push yourself sometimes. Coming back after a rather 'leaky' walk didn't put me off walking.

I was also lucky to hear about 'hypopressives'  -  I wrote a thread about those, somewhere on this forum, a while back. A system of boosting your core muscles (diaphragm, abdominal muscles, back muscles) with the effect of lowering the intra-abdominal pressure. It's that pressure which can bear down on the bladder and make it so much more difficult to keep control. Anyway, an online course of hypopressive breathing exercises undoubtedly helped, and even now if I sense the bladder is being pressured from above, I can brace those core muscles and the sensation goes. Magic!

User
Posted 08 Jul 2021 at 19:22

I’m now four months post op and my continence is improving quite well,I’m now dry through the night and down to I pad a day so this is good progress I’ve been told by the continence clinic.

I do kegal exercises daily and don’t take any caffeine drinks and very little alcohol for now.

I hope this information is helpful for anyone having a prostratectomy procedure.

 

 
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