Post Op Recommendations
I'm scheduling my RALP for mid January. As someone who tries to be prepared for as many possible outcomes as I can, I want to make sure I'm stocked up on any necessities prior (incontinence underwear, pads, etc).
I've read here and there about some things to make managing the catheter easier, such as a bucket to put the bag in at night. I've also read about attachments and leg straps to make that easier as well. What do you recommend in this regard to make this part of the process easier? The surgeon says the catheter will stay in for seven days.
Just like my last surgery, I am planning to spend the majority of that week in a recliner so I have plenty of flexibility in positions for sleeping and recuperating, I'll make sure that area is decked out with everything I need to do whatever needs done to the greatest extend possible.
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I did similar asking, you know doctors trained in traditional surgery and have never seen, read, or studied a close option are not going to recommend it since it is just another unknown and in past some not great options were out there. But contrary to what you mention, if you see a doctor you are still there patient for two years - in general this is true nationwide. So you don't lose any doctor going with another treatment. Also Tulsa leaves ALL other option open for recurrences, it does NOT close them, I looked and talked to doctors on that and it is completely true. It also opens some options in some cases.
Good luck on your procedure hope it works out for you.
Actually I intentionally did not restrict my discussions to surgeons, and even the radiation oncologist also said the same thing, despite having read multiple times on forums that "surgeons only recommend surgery, oncologists only recommend radiation". But, I also did my own research on the matter and have read some very large studies which confirmed their concerns. I'm glad it worked for you and I'm sure it's worked for other men as well, but it's a little too experimental for me unless my last medical oncologist (who has no pony in the race) from MD Anderson tells me to reconsider.
Well good luck, as we all can see Mayo is doing Tulsa now, and I would take their thoughts over MD Anderson myself. Because many see traditionalists are reluctant to adopt this has spurred a big opportunity for interventional radiology. A big interventional radiology group near me just started offering Tulsa this month, we are going to see a real lot of that next year because it has been slow in urology practices to adopt but the big ones are, and now interventional radiology groups will be big into it. Just how it is going due to the built in reluctance we all see and hear... and I mean we all talk to 4 or 5 uro + rad docs, this is real common, so nothing new heard there (and yes they are still our docs for two years when we opt for other options). Some uro practices are buying in now and that is good, but interventional radiology is going faster since you need MRI's and all.
"...I'm working my butt off right now..."
This is the right attitude. There are proven pathways to maximize your chances of good return of continence and erectile function. Committing to those rehab plans with the laser focus of a footballer to make the NFL as an undrafted walk-on will at a minimum help you avoid wallowing in worries about what your future life will be like. There is much advice in this forum on both these fronts.
There is no current set of standard guidelines for penile rehabilitation post nerve-sparing RALP. Personally, I found the following to be effective for turning my "dead fish" back into a firm and playful dolphin. Starting within two weeks of the surgery, daily PED-5 inhibitor (eg viagra @ 50-100mg), stimulation to orgasm 2x/week with a sex toy designed for a flaccid penis (eg Octopussy), use of a vacumn erectile device 5x/week for 2-3x 3-5 minutes (eg Vacurrect), and patient playful experimentation with my wife. At age 74, that got us back into our previous sex life within 7-8 months. I regarded it the same as re-habbing from a significant injury, like an Achilles tear, which can take up to a year.
Some of what you are suggestion are already under way. My doctor will have me on a low dose of Cialis for 3 weeks prior and then daily after. My specialist recommended that I also take an amino acid supplement that is in watermelons as it has anecdotal evidence of being helpful (L Citrulline 3000mg per day) for 3 weeks prior and daily after. The pump has been ordered and awaiting its first use. The toy you mentioned I have not heard of but will investigate, however I was told by the penile specialist that working towards an erection daily will be important for a number of reasons and he's hopeful that will wake things up and get back to the nocturnal "penis push ups" that we all have prior to surgery that keeps things from getting atrophied - so to that end me and my below-the-belt-buddy will be spending a lot of quality time with each other!
I'm still not sure of the penis pump thing. I can't stop thinking about Austin Powers. 7 weeks post-op & I'm too busy peeing myself to worry about penile rehabilitation right now.
I'm sorry that you are still suffering from that and I hope it clears soon.
To me the ED/Incontinence thing is akin to that old story most of us know about the 95 year old man who smokes a half a pack a day and eats bacon sandwiches daily and is perfect health for 95 (aka Grumpy Old Men): some guys have reported erections on day 1 with the catheter (and painful too) and others report the day after the catheter they had either no issues at all or one minor issue and then all clear. This is what we wall hope for but my docs told me to expect a minimum of 6 weeks to 6 months of incontinence at least, perhaps longer, and up to two years before the erection is of any consequence.
I've also read some horror stories of not exercising that erection regularly and losing 1-3" of length and girth and shortening of the un-stretched urethra being problematic.
This is to say that if I'm still peeing myself I'm going to work in stimulation between those times as much as I can. I realize life changes, but if there is a single thing I can do at any point to assist with reversing those changes then I'm going to do it, no matter how messy or uncomfortable it is (until the point of pain of course).
That's one more thing I can't brave yet.... I know it's very much "use it or lose it" and manual stimulation is important to prevent long-term issues, but manual stimulation of the penis is not practical while it's constantly covered in urine. (sorry for the visual).
So penile rehabilitation, though I recognise it as important, won't be happening until the constant peeing slows down.
Having said that, I just bought this:
https://www.kgoal.com/products/kgoal-boost-kegel-trainer-for-men
and it's looking pretty good.
Fun to use, but I'm waiting to show my physio so I can tell if I'm actually moving the right muscles.
The games are great, though.
I am 71, and I had my surgery on September 16th. Starting last night I am no longer using anything for incontinence. I thought I was going to be in for the "long haul". A caveat however, I am not having radiation or ADT yet, so things may change.
Each of our journeys has a lot of commonalities yet every journey is unique. You can get an "average" view by reading all of the comments, but your journey will be unique to you. BE YOUR OWN BEST ADVOCATE! If there is information from your doctor you want, get it. If there are other opinions you want to get, get them. If you want a private opinion on this group, then reach out through the private message on here.
Get some stool softener as well. I used prune juice and it worked REALLY well. LOL. Another member on here also tried it and it worked great for him as well. Doesn't taste all that great but it definitely gets it moving.
Just a couple of suggestions. I had RP 3 years ago.
I second the notion of lubricating the catheter with gasoline where it enters the penis. Pull the penis back a little so the catheter is lubed where it goes in. Helps prevent irritation.
But book "Life after Prostatectomy; 10 weeks to continence" by Vanita Gagliani on Amazon. She is a very experienced pelvic floor PT and gives a very detailed instructions how you can become continent quickly. It's more than just kegels. I found it very helpful. She gives instructions to start pre op.
I found the Tena brand of pads the best. I agree with one poster about not buying too many until you see how you are progressing.
This is obvious but needs to be said. You will kinda get used to having the catheter in. unless you have the bag strapped to your thigh 24/7, be careful about getting up and walking without the bag. Ouch! It happened-once!