Recovery of continence following prostate removal

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Thanks for the encouragement.

 

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I had my RP August 9th, 2022 with catheter removal on August 17th. 63 year old, male, in decent shape.

IMMEDIATELY AFTER CATH REMOVAL:

Right from the get go I had no leakage while sitting or lying down; however, as soon as I stood up I had to immediately rush to the bathroom while making a very conscious effort to “hold.” I did get to the bathroom “successfully” approximately 90%+ of the time. While standing or walking I had continuous leakage.

ONE MONTH LATER (APPROX. MID-END SEPT):

No leakage while sitting or lying down; when I stand up I still need to get to the bathroom. However, now I can take a few minutes (no rush) and don’t have to make an extra effort to “hold.” I have a 99% + “success” rate. While standing or walking, I now have only occasional squirts. Recently, I attended the neighborhood block party and was OK for a couple of hours before beginning to lose control while walking home. Most of the time I find one pad a day is quite sufficient.

On the whole I feel quite lucky to be doing as well as I am. However, still can’t wait to improve in a couple of areas. First, I have to make a trip to the bathroom EVERY time I stand up from sitting or lying down – it doesn’t matter if I have been sitting (or lying down) for 5 minutes or for five hours. As a result, my entire life seems to revolve around going to the bathroom, which is a real drag! Second, at night I was waking up and then having to take a trip to the bathroom VERY OFTEN. I started keeping track of the frequency and a week or two ago it was at least 14-16 times every night, which was very disruptive to getting good sleep – I’d get 4-5 hours of sleep and my Zepp showed it was all light sleep, practically no REM or deep sleep. The urologist started me on one 5mg Ditropan tablet every evening, and now I’m down to about 6 times every night. Per my Zepp I’m getting about 7 hours of sleep and a decent amount of it is deep and/or REM, so I’m feeling much better in the a.m.

Prior to surgery the urologist had (somewhat casually) mentioned incontinence as a side effect, but IMO did not sufficiently emphasize or talk about it. Luckily I had googled RP and also started lurking on the forum, so was as “prepared” as one could be. It’s not fun, but overall I feel I have been pretty lucky.

P.S. Yes, have ED too, but I’m not even thinking or worrying about that until the incontinence is history!

 

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I had an RP 18 years ago and my incontinence has me sitting on the toilet for hours every day. I've finally had enough so I am scheduling the AUS device to be installed in January.

 

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Bgh how are you doing?

 

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Hi All

A 76-year-old who had RP surgery 4 weeks ago. The immediate after effects of the surgery were minimal with regard to pain (2/10 or less). The catheter was removed 7 days later. Since then, I've had incontinence issue. I tried using guards but had to change them every 3 hours or more often. When sitting or lying down no problems but as I stand and take a few steps leaking starts. I am currently using a generic Depends like undergarment during the day (4 or more/day) and an overnight garment. I'm up at least 3 times every night and by the morning the overnight garment is completely soaked. I'm doing Kegel exercises 4 times/day but so far not much effect. I have a scheduled session with PT in a few days. I'd be interested in hearing the experiences of "older" gentleman.

I'm afraid I may have underestimated the order of magnitude of the incontinence issue. The surgeon said in his practice 90% overcome incontinence in 3 weeks and 97% in 3 months. I expect this is heavily weighted toward a younger patient population.

 

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Same here, and I'm 6 weeks out from surgery. Steady drip in my case, though I can get away with using 3 pads during the day. I use pull-ups at night - several. Interestingly, despite the leaking at night, I wake up in there am with a full bladder and a at least get one good piss/day. Started PT two weeks ago, only slight improvement. PT discharged me after my second visit, told to keep doing the keels - I've done hundreds, if not thousands of reps. My surgeon said that same thing about % of those who have resolved incontinence. I have a zoom meeting with the surgeon's PA tomorrow.

 

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Hi Murray1245. I have to be honest and say that I think the statistics you were quoted by your consultant are unrealistically optimistic. I know the system in the USA is different from us in the UK and I think there is a degree of "marketing hype" in those figures. I have done extensive "googling" on various medical practices and have never found statistics like those you've quoted. A US sources says, "For many men it may take 6-18 months. Research by Kingedwardvii hospital in England found 46 per cent still needed pads at 6 months and 17 per cent by a year. Paul Chung, "Aged between 40 and 60 about 3 months. For others closer to a year." Australian source, "For some men, urinary problems start improving soon after the catheter is removed while for others it can take 6-12 months." There are many more sources I could quote but I hope these give you a realistic perspective.

With regards to recovery having less leakage when lying or seated compared to standing, walking or exercising is to be expected. My first milestone in regards to improvement was a reduction in nighttime visits to the loo. I was up 3/4times and now often only once. I also had to change a pull up in the middle of the night. Now I am essentially dry but still wear a small pad just in case. I am better early in the day and have more leakage later in the afternoon. Overall the amount of leakage has diminished quite a bit. I am 67 years old and 7 months post prostatectomy. One of the biggest issues is being mentally prepared and keeping a positive mindset. I hope your recovery goes well.

 

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I have to agree with Hbrownlow. Most if not all of the post RP patients I’ve talked with said improvement was not significant until 3-4 months post op. My surgeon said less than 5% still had significant incontinence at a year. I’m 10 weeks post op and leak constantly standing but do better seated or lying down. Unfortunately I returned to work and am on my feet a great deal. I’m 63 and otherwise pretty healthy. Incontinence is a much bigger problem than I thought it would be. I’m optimistic that I’ll continue to improve as time goes on. Doing everything, kegals, PT and walking. Hoping for the best for you.

 

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My incontinence started about 12 years post-RP. Nothing helps so I am getting ready to undergo the AUS implant at Loyola Hospital in Maywood, IL.

 

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@murray1245

I agree with the others on the percentages quoted you being unrealistic.

My urologist/surgeon stated 50% dry at 3 months, 75% at 6 months, and 95% dry at 12 months. He also stated that there are things he could do at 12 months meaning the AUS or male urethra sling surgery. I choose to try the sling in Sept 2021 - 13 months ago and am very happy with the results.

I have to say that months 2 and 3 were the most difficult for me dealing with incontinence. Many men start to see noticeable improvement and management around months 5 and 6.

I learned to layer my incontinence products - I wore two depend pullups at the same time and a pad. I would change the pad as needed (about every hour). I would cut out the inner pullup when needed. This reduced the need to pull off my shoes in a public restroom to change pullups.

Many men on the forum use much heavier and better protection for non-prostate related incontinence. It took me a month before finding NorthShore GoSupreme pullups to use at night. I used GoSupreme for 5 months at night. The link below. I tried the NorthShore FlexSupreme pullups - the padding in front was lower and did not work as well for me.

I purchased most of my products online at Walmart and Amazon. Costco instore had the best price for Depend Pullups.

Northshore has free product samples

Northshore product sample request

Learn about NorthShore Care Supply’s try before you buy sample program with samples of adult diapers, tab-style briefs, pull-up style underwear, protective underwear, incontinence pads, underpads and more.

www.northshorecare.com

https://www.northshorecare.com/adult-diapers/adult-pull-ups/northshore-gosupreme-pull-on-underwear

 

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Thanks all for your input. My experience, so far, is in line with all the comments received. I see a PT on Monday and follow up with the urologist NP in about 3 weeks. Good luck to all of you as the journey continues.

FWIW I am currenlty using a generic Depends equivalent from Kroger during the day with a guard inserted as well and an overnight Kroger garment that works well. The Kroger generic items seem to work better than Depends for me and less than 1/2 the price.

 

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Murray1245,

You are one of the very few men that is "happy" with the 'sling' results. Most are dissatisfied with it.

I don't want my entire bottom to get wet, so I wrap the 'little guy' in folded paper towels covered with a tiny plastic bag secured with small rubber bands. This does a pretty good lob of keeping my bottom dry providing I change it every hour or two. I can usually go all night long without a pitstop or changing it...probably because I'm inactive and horizontal.

If I'm going to be gone for extended periods of time, I sometimes use the cathether condom attached to a ballon which works well.

 

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