Life after catheter

User

Posted 02 Aug 2025 at 09:50

Hi all

I had RARP on July 18th and have just had the catheter removed and my worse fears are now real. I did and do the kegal excersises but to no effect, I have no sensation of wanting to pee the first thing I know about it is when urine has reached the tip by which time it's to late and I'm wetting my self, I'm going through pads at an alarming rate as I'm constantly passing water. Wishing I never had this done now as I had no problems before diagnosis after a visit to well man clinic.

User

Posted 02 Aug 2025 at 17:17

If you are constantly going then you may have a water infection. If so see your GP and you'll go on antibiotics for a week or two and that should bring a great improvement.

I had a water infection immediately after removal of my catheter. I am told it's fairly common. The first two days after removal I got through about 20 plus pads. Once I was on antibiotics it reduced over two weeks to about three pads a day. I got down to two pads by about 8 weeks and at 5 months I was only wearing pads at night. At six months I was free of pads.

Everyone is different but def get checked for a water infection/UTI.

User

Posted 02 Aug 2025 at 20:21

Thanks to everyone for info, and all the positivity, and comments of support,at the moment I'm also suffering mentally the anguish of my condition at present, is getting me down. Before the op I didn't have the strongest/ large bladder so this has just exacerbated the situation, when younger i had peritonitis and was in hospital for 6wks as they had to remove a few feet of diseased intestines so food and drink passes through me quicker than most. Sorry for the long winded reply I'm just feeling a bit sorry for myself, but really appreciate the help and support from people on this site.

User

Posted 02 Aug 2025 at 20:53

Two and half years ago I was in the same place as you. I’d had my op and catheter removed and as they say I could not hold water. What went in went straight out. I must have been a nightmare to potty train as a toddler! I was on 9/10 pads a day and often soaked through. It was quite a depressing time. After a few weeks something clicked and by the time I was back to work after 7 weeks I was on 5 pads a day. Over the following few months that reduced to 1 a day. I’m still not completely dry and still use a pad for security for the odd escape sneezing laughing coughing working out etc buts it’s only a tiny drop at a time. Some days I can be basically dry. Keep squeezing and just be patient. Good luck.

User

Posted 03 Aug 2025 at 18:32

Hi Steve,

I had a further thought/memory that might help. When I had the catheter out, It was explained to me that everyone who has the op has bladder shrinkage until the catheter is removed . Depending on your own body the rate of bladder shrinkage can bring you to a bladder the size of a small nut hence the endless toilet trips. Once the catheter is out the bladder slowly gets larger and larger again. The exact rate that it recovers its size is also different for everyone.

I know it's horrible but there is every reason to believe that soon you'll improve and ultimately be back in control. Stay strong and keep the exercises up! I was doing 10 pelvic floor exercises at a rate of four sessions per day. I honestly thought it would never work but it did! Even now I do 2 sets per day.

For the record - I am 14 months past my op and rarely leak. Like others on this thread, the leaks tend to be when I overdo it and get tired. I can get through an average day but when I recently went to Florida I did put on a pad and it was used a little at the end of more than 24 hours awake and after all the travelling.

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User

Posted 02 Aug 2025 at 17:17

If you are constantly going then you may have a water infection. If so see your GP and you'll go on antibiotics for a week or two and that should bring a great improvement.

Everyone is different but def get checked for a water infection/UTI.

User

Posted 02 Aug 2025 at 17:23

Hi Steve,

I'm sorry that you're having post op problems. Are you urinating all the time, day and night. Is it worse when you stand up, cough etc?

Paul makes a good point it could be an infection

It's very early days, mate. If it continues for another couple of weeks or so, I'd be inclined to call the clinic where the catheter was removed or ring our specialist nurses and ask their advice.

Paul's advice is sound regarding contacting your GP and getting yourself checked out for a urine infection.

Best of luck and try to not to let it get you down. On average it can take up to 6 months to regain continence.

Edited by member 02 Aug 2025 at 17:29 | Reason: Additional text

User

Posted 02 Aug 2025 at 17:43

Thanks for reply, I leak lying down or sitting but is more prevalent as soon as I stand up and move.

User

Posted 02 Aug 2025 at 19:51

Hi Steve,

I had mine in March 2025 so I'll be coming up to 5 months mid August.

My worst nightmare was the incontinence and I had it fairly bad after the catheter came out and at first really struggled with it mentally. I thought being in my mid fifties and very fit plus doing the kegels that it wouldn't happen to me!

After a while though I got used to the pads and changing them regularly.

Started going out and about with the pads filling up but realising I could live almost normally(even though I hated it)

Well im 5 months down the line and no longer need pads at all. I still leak a bit when tired or have exercised a lot but not enough to even need a pad. It took a good couple of months before I started seeing improvements and sometimes it gets worse again but gradually has got so much better that its just a minor thing.

So hang in there, keep doing the kegels and try and live as normally as you can and it WILL get better.

Good luck,
Mike

BTW I had no sensation of wanting to pee for many weeks. That gradually came back

Edited by member 02 Aug 2025 at 19:54 | Reason: Added comment

User

Posted 02 Aug 2025 at 19:54

Hi Steve

I was the same for the first couple of weeks.

My Eureka moment was one very early morning, very exhausted, went to the toilet and set down rather than stand. The urine was flowing freely and I instinctively tried to stop the flow and was amazed to find that I had a discernible control. Of course I was not aware at the time that I was using my pelvic floor muscles. From then onwards I always set down to 'empty' my bladder and did the stop start routine - count to ten when squeezing to try and stop the flow and let go to the count of ten - do that ten time two/three times a day. I regained good control within three weeks. That was 14 years ago.

Don't give up on this routine because you need to retrain your external sphincter - your internal was removed during surgery - and your brain to accept the new normal.

Good luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 02 Aug 2025 at 20:21

User

Posted 02 Aug 2025 at 20:53

User

Posted 03 Aug 2025 at 02:02

Steve , good idea about getting checked out for a water infection, I have a permanent suprapubic catheter and normally leak 2 mls a day sometimes nothing, with a water infection I can fill three pads a day. There is still lots going off down three stitches and scabs dissolving,swelling going down etc, One thing for the future is the hem o lok clip migration, we don't see much of now but it is something to mention if your situation doesn't improve soon,and I am sure it will.

Thanks Chris

User

Posted 03 Aug 2025 at 18:32

Hi Steve,

User

Posted 02 Sep 2025 at 11:36

I would echo what others have said. Get checked for a possible UTI. I was able walk into my GPs surgery and ask for a sample kit and it will get checked within a few days.

A month after having RARP, & catheter removal, I was admitted to hospital on 27th Dec 2023 with a UTI. It put me in hospital on an antibiotic drip every six hours.....for a week! New Year celebrations were somewhat muted.

I was very lucky in that I was 95% continent after surgery. Keep up with the kegels & hopefully things will improve. Good luck.

User

Posted 02 Sep 2025 at 15:13

Thans to everyone that has posted on this thread much appreciated. I did as suggested have a test for UTI came back negative but bought a test kit anyway just to check. What has made a difference to my situation/ lifestyle is a product I was told about from Coloplast that sell medical supplies plus much more. It was one of their products called Conveen, something like a condom but with a bit of tube at the end. I attach a bit of silicone hose to a leg bag either thigh one which they make, or for longer days out a normal bag for the lower leg like you had when fitted with catheter. No more carrying a bag of pads just empty as and when needed. 4wks now after catheter removal sitting or lying down I go to the toilet to pee, but still have no sensation when standing or walking as I stand up I can feel leakage, doing the Kegal excersises doesn't seem to help at the moment but will persist, as people have said the nerves take time to heal. It just feels like I have no bladder drink one end straight out the other minutes later. At least I'm not rushing to the toilet with my system in place. Best wishes to you all.

User

Posted 02 Sep 2025 at 16:02

Steve.

Good news you don't have a UTI. You have been through major surgery. Your plumbing has been detached & re-attached plus all the grubbing about in there by the surgeon, and to top it off a garden hose got stuffed up yer willy! Your innards are wondering what flipping hell has just happened? It will take time for things to heal and stuff to knit back together. You're only six weeks in. Patience Grasshopper. :-) Everyone has different experiences.

I still get an occasional "escapee" if I get up too quickly or a particularly vigorous sneeze or cough. What I have found is that I cannot hold as much pee in my bladder as I used to, & when I have to go I have to GO! I carry a PCUK Urgent! card with me so if I need to use the toilet when I'm out I can flash the card & use a toilet anywhere. Plus, you can use the disabled loo if needed.

Good Luck.

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