Advice wanted for upcoming RARP

@edinmaryland
I had a catheter for two weeks after my surgery. After it was taken out, I didn’t have an incontinence problem until five years later. I’ve heard from many people that had the same Experience I had. I’ve heard from a number of people that have had incontinence problems after the Catheter removal, But it usually resolved over time.

@jeffmarc Thats one thing I am afraid of. Losing continence as I age. What was the trigger for yours after 5 years? If its not tot personal.

@someoneelse
There was no real trigger. I just started leaking a little bit about 5 years after the radiation. I needed a thin pad to absorb A small leak problem for a few years. It has just gotten progressively worse Over the last seven years. I now need a thick pad And if I’m really active, it gets soaked and so does my underwear.

I do put on a clamp when I go to the gym. I still need the pad because even though the clamp is as tight as it can be, I do feel occasional leaks through it.

I am 77, almost 78 So that could be a factor too.

I don’t have a problem when I’m laying down. Don’t need any protection at night, Though I keep a small towel nearby because if I sneeze or cough heavily, there can be a little leakage. I also need it if I get up because I will leak immediately standing, even if I just emptied my bladder.

Hello -
First of all: Good luck with your procedure. Secondly...literally everyone's recovery experience is different. Here are a few things to ponder based on my DaVinci Robotic-assisted Radical Prostatectomy:
1. Ask/insist on an order for "Pelvic Floor Physical Therapy" (PFPT) to start immediately after your catheter is removed. It is great that you are doing Kegel exercises, but I was amazed how many more similar exercises there are. I never knew there was a PT subspecialty called PFPT. The exercises will be helpful. Your health plan may initially only authorize say, two visits, but it just takes your therapist to submit justification for eight sessions.
2. Depending on what you can tolerate, make sure you get a prescription for a week's worth (at least) of pain meds like Percocet or Vicodin. My pain was surprisingly "deep." I don't want to scare you, but I had never had any abdominal surgery. Since the prostate is so deep inside us, I felt that pain "deep" inside. I felt beat up, pummeled, and assaulted. I just laid around for a week before I started to feel a slow recovery happening.
3. Sleep the first two weeks with the catheter is fairly easy. The tubing is long enough to hang off the side of your bed. The large bag will last all night and it has a 2-pronged plastic hook/hanger to hang it on the side rail of your bed. Wherever you hang it, just make sure it is lower than the height of your bed so it will drain away from your body into the bag (gravity). And...
4. You'll want to buy a small box of alcohol wipes to use when changing from your larger night time bag to the small bag strapped to your leg...IF you want to use it. You just need the prep packs to clean the tips/connections of the catheter and bag. I did not like the leg-strapped bag because it is quite small, and you have to change it every hour or two. Since I was "down for the count" recovering for the first week, I just used the larger bag the entire time.
5. Toward the end of my 11 days of the catheter use, I started leaking urine between the outside wall of the catheter and inside of my urethra. Not a lot, but enough to be bothersome.
6. Pads and diapers: If you wear jockey shorts underwear, then a pad is likely your best bet after your catheter is removed. The tight fitting jockey underwear will hold the pad in place. Once you start driving after 2-3 weeks, you can easily carry an extra pad in your pants pocket for a quick change in a public restroom. But...if you wear traditional, looser fitting boxer shorts like I do, you have to use a diaper because a pad will fall out of your boxers. I used a diaper and carried an extra in my pocket for if/when needed. You'll need packets of cleansing wipes as well since your scrotum will get bathed in urine from the wet pad or diaper. And...
7. "News flash"...Do not wear a "pad" inside your "diaper" thinking you can do a quick change in a public restroom. You "can", but...I was exceedingly frustrated with the pad in the diaper. It seemed to be of no help, and I thought that my incontinence would never end. Then one day, I had run out of "pads", so...I went out in just a diaper. I barely leaked at all. I knew it was always an extra, bulky item to have a pad in my diaper, but then I realized that the pad inside the diaper, was pushing up on my perineum thus putting pressure on my bladder, which caused my bladder to leak MORE. The pad took up so much space inside the diaper that it had to go somewhere, so it applied upward pressure on my perineum, which in turn caused that pressure on my healing bladder. I tested myself for the next 24-48 hours after deciding to wear a diaper only. It was miraculous. The volume and frequency of my leaks decreased by like 75% instantly. I am now approaching six months post-op and I am 95-98% continent. I just have small quarter to half-dollar size leak stains and moisture after wearing my diaper for hours. I have gone from 6-8 diapers per day, to two, and I don't sleep in one anymore. It is all about "gravity", and at night while laying horizontal/supine in bed, there is no pressure on my bladder, so I don't leak. It has been nice to sleep in just boxer shorts again.
8. Decipher Test - If you don't already have it, please do yourself a favor and insist that your urologist order the Decipher Test. It is a proprietary test don't in a lab called Veracyte in San Diego, CA. It tests for 22 prostate-specific cancer genes. Your genetic make up yields a score for "zero" to 1.0. You want your score to be as low as possible. Your genetic make up of that prostate tissue and the Decipher test "score" tells you of your risk for future recurrence, but mostly your predicted longevity for 5 years, 10 years, and 15 years. It is a very mentally calming (or not) report of what to expect. Even with my score of 0.50, which is Intermediate Risk my genetic make up is such that I could still very well be alive in 15 years. I have very low probability of death in 5 years or 10 years (4% and 7%, respectively). I say that because I had "surgical margins" which means my urologist left cancerous tissue in my body...he didn't get it all out. That happened to 10-20% of us, and I am unfortunately one of them. "If" my PSA is 0.2 ng/ml or higher in any subsequent PSA testing, I will start radiation for 40 days straight. BTW...you will have a PSA test every three months for the first year. If all is well, then it decreases to every six months until if your doctor decides on once per year, or...you are now at the 0.2 ng/ml value or higher which will mean more treatment with radiation or hormones or drugs.
9. Pathology report - ask for a copy of your surgical pathology report "before" you have your appointment to discuss it with your urologist. That way you can do some research on each feature detailed in the pathology report, and have pertinent, focused questions for your urologist. I only got my report at the time of my follow-up. I was forced to be more passive as I tried to read it while my urologist spoke and explained things. "After" I left the offie and studied it at home, I had a TON of questions, that could only be addressed through my urologist's website patient portal ("messaging").
There is more to offer, but this got too long...way too long: sorry. Good luck to you.

@retireditguy Thank you for taking the time to reply to my question. I really appreciate it.

@jeffmarc Thank you for taking the time to reply to my question. I really appreciate it.

@shalom7777777 Thank you for taking the time to reply to my question. I really appreciate it.

@jayhall Thank you for taking the time to reply to my question. I really appreciate it.

@jeffmarc
Yeah, well, you and that OB/GYN are obviously so darned macho!

But, at the same time, it doesn't seem as bad as I had feared!

Yeah, I just had mine four days ago.
I'm feeling pretty well, if somewhat low-energy. Just acetaminophen, despite "autism dangers", is enough to control any belly pain, which has been minimal. The nurse during discharge was super helpful and loaded me up with all kinds of drugs and accoutrements--don't really need much of it!
I haven't been out and about much. My understanding is that it's ideal to not change catheter bags to minimize chances of UTI, so I just have the larger bag connected, hiding it discreetly in a plastic shopping bag when I do walk around outside. It seems to last the entire night, so I can just empty it in the morning. I do have a wife providing support.
Took me two days before I could move my bowels, also little to no appetite, even now.
I don't have any special continence provisions--I think that comes into play after about 10 days when the catheter is removed. Like you, I've been doing Kegels, so I hope to regains control before long. I've been advised NOT to drive before catheter removal--whether that's due to being vulnerable due to a tube sticking out of me, or the potential hazards of tubing getting snagged amongst pedals, I'm really unsure.
I swear that the worst thing at the hospital was being barked awake at 6am--I am NOT a morning person--to order my breakfast, served a couple of hours later. Hospitals are notoriously hard to sleep in, although I had a private room, which was really nice.
Sorry I'm kind of rambling. I am still feeling just a bit spacey--after effects of general, perhaps? But based on my experience THUS far, I'd say don't over-think it or over-worry it, it doesn't seem to be that big a deal. You'll be a bit stiff, sore, and slow-moving for a few days, but ultimately we're both going to beat this thing--we have similar health outlooks I think, and, hopefully, regain most of our prior capabilities. I think the nervous anticipation, which is to be understandable, is worse than the event itself, so try to be calm about it, and relax...