Learning and Confused

From bob1949 (22 Jan 08)

 

I’ve been a member a short time, reluctant I had to join, but enjoy the site tremendously and made a few posts but have mostly been reading, trying to learn.  Since my Da-Vinci surgery isn’t scheduled until 25 February in VA, I’ve had plenty of time to get confused by what I’m reading.  I realize its probably/maybe/hopefully normal for those that are post-surgery or successfully working through recovery already, so, please excuse my naive brain at this point.  My Conditions/Meds are in my signature (Atrial Fibrilation, Post Kidney Cancer/Removal in 2002, Gastric By-Pass Surgery in 2005), but I guess I get confused because, although I did general research and talking to family, I’ve only talked to my actual surgeon once so far and obviously didn’t know the questions/possible concerns I know now.  YES, I’m still going thru with this J  L

 

I am hearing things like obviously “Pads,” from 4-8 a day? Incontinence lasting from days, to weeks, to even months?  I assume this voiding is from the rectal area or is it coming from the penis also, or both, and, just how bad can it be?  Could anyone give me info how this would possibly effect an anticipated trip to Disney World with grandkids (lots of walking, or Wheelchair/Scooter) for Early May if my Da-Vinci is Feb 28^th.  Obviously, I’m worried about Sneezing & Coughing (Allergies), having to remain in certain positions? (We have wall-to-wall carpeting, is that a problem, am I gonna be dragging my butt around too? Ha ha

 

ED is something my wife and I don’t talk about a lot but from the message board I’m thinking this is going to open up a entire new dialog on, the message board almost going into a sex-chat board at times ha ha, wondering about body parts changing colors, attaining erections while sitting on a bathroom stool, from urinating in my wife, from peeing all over my wife and the bed (platic sheets?) taking shots and large dosage of Viagra, Tri-Mix etc to perform, even from those who’s posts indicate they are post surgery for a while

 

I tend to hear the Stress level among Prostate patients is higher as well as Tear production (Crying)

 

I hear about the Nerves or Nerve Bundles and Nodes being spared or removed, can anyone elaborate on these.  Also, my surgeon has warned about the possibility that when he goes in (Da-Vinci) if there is too much scare tissue from previous surgeries he’ll have to open me up, so, I guess that would further any and all complications, back everything up further ?

 

I anticipate one night in hospital, and I’m sure the Dr will tell us what to expect, but to what degree am I going to be a infant in my wife’s arms when I return home?

Bob,
After they take the catheter out, your muscles and nerves have taken a real beating. They have also removed one of the main valves that kept urine from flowing (it is part of your prostate...the valve that made it so you could not pee with an erection) You will mostly likely leak drops of urine when surrounding muscles put pressure on the bladder. Standing, walking, stairs, coughing may all produce a small drip or squit or urine. Now, in totaly candor, some men have absolutely no control at first and may produce a large flow of urine. But, i was able to hold it immediately after the cath came out and only use 2-3 pads a day. I am dry at night and do not leak at all. Everyone is different. most men regain continence, according to my nurse, in 2 weeks to 2 months. Many men take longer. Up to a year or more. There is usually nothing to worry about as far as rectal control. It is just urine.
Don't let it worry you about Disney. the pads are great and even if you leak a lot, you will have lots of places to change pads.

The nerves which control erections are wrapped around both sides of the prostate. During the surgery, they peel, or lift these tiny hair-like nerves off the surface of the prostate and pull the prostate out from between and under them. Just that little bit of manhandling causes damage and the nerves simply don't work for a while. They are bruised and injured. They need time to heal. The nerves for orgasm and sensation do not go anywhere near your prostate, they are located outside the pelvis. So, you can still have an orgasm and feeling in your penis.

You will need to have open, honest discussions with your wife about your sex life. BUT look at that as one of the positives of this whole event. It WILL bring you closer and deepen your relationship. Keep it humorous, kind and hopeful. Silence can kill your marriage. She will think it is her fault or think she has done something. You both put up walls and things will only get worse.
Believe it or not, the outcomes have very little to do with the surgical technique - open or DaVinci - they are surprisingly similar.

Others will have more to say...that's my two cents!
Paul

Bob,

I know that there is so much out there to read and digest at this time.  One month prior to surgery I would be doing a few things.  First, exercising, especially walking.  You'll also probably be on your feet the same day of your surgery and walking then will be very important.  Even with the catheder, I worked daily to extend how much I could walk, and I continue walking every day.  In addition, I strongly believe that Kegel exercises I did before surgery and after the catheder was removed helped me to regain continence fairly quickly.  I purchased one pack each of depends and a large men's pad, and I ended up storing the majority of them away.  I ended up using a small women's pad just in case, but forgot about them quickly.  My surgery was January 19, and I was umpiring high school baseball 7 weeks later.  I did wear those women's pads while umpiring, but only until I got my confidence up.  There are other horor stories out there, but think positive going in.

I'm strongly in favor of deciding on the surgery.  Before mine, I was worried that I was being too aggressive, but after my pathology report, I was glad I chose it.  You've been through a number of other procedures, and I think that you'll find this one major, but not as tough as others.

Good luck, and please don't hesitate asking us more questions.

Bob--You've already been through kidney cancer, atrial fibrillation and other medical conditions, so you've got a head start on understanding yet another disease, prostate cancer. And you're lucky to have found this forum, confusing as it may seem at times.  I did not find the forum until after surgery, but better late than never.

Prostate Cancer patients who opt for surgery, as you have, are all over the map in terms of their recovery, including  urinary and sexual function.  The great thing here--and I've encountered it many times myself--is that whatever the problem, you're probably not the only one who's had it.  Just knowing you're not alone can be an important first step to resolution.

That said,  I used several full-underwear pads a day (I had penile leaking only) when the catheter was first removed.  I thought it would go on forever, but it did not.  After a week or two, I was down to one a day, then began to use only a strip pad in front of my own underwear.  Now, except for occasional stress-incontinence (a dribble only) I am continent. 

The return of sexual function has been more problematic.  I have to use penile injections, which are definitely not my idea of a fun time. But with an auto-injector device, it less difficult for me to self inject ( and less painful). You will find men from A to Z on this issue--some have an erection on awakening from surgery and others have continuing difficulties with this regardless of the method used to acheive erection.

I would strongly urge you, if you haven't already, to communicate with your wife on all aspects of prostate cancer--physical, emotional and spiritual. It affects them all profoundly. Prostate cancer is a 'we'  deal with my wife and me, as we journey together, heart-to-heart, hand-in-hand. 

I am still myself but also someone who has been changed by my experiences with prostate cancer.  I try to live every day as if it were my last and each day as if I have a great future.  Allow yourself to grieve the inevitable losses that prostate cancer brings, but also celebrate what you gain as a result of having prostate cancer.

Sometimes, especially at night, I am bewildered, worried and frustrated by prostate cancer and all it has brought into my life.  Sometimes I think about it too much. But at times like that, I try to remember to do the hardest arithmetic of all and count my blessings. And as a religious person, when my mind parts in confusion I find that meditatating on these four simple words is helpful, repeating them with different emphasis each time: "GOD is for me, God IS for me, God is FOR me, God is for ME."  And this often brings peace of mind.

Take care and hang in there...Tim

Bob, I'm one of the Long Term Leakers here. Having been to Disneyworld myself years ago I would not worry about using pads there. I never encountered a dirty bathroom or empty toilet paper roll the entire week we were there. I have found cargo pants or shorts to be great for hauling a day's supply of pads. Those expanding pockets are amazing! For me, after changin pads in public restrooms and at work I could care less what people think!
I wish you luck with your surgery and recovery.

KW

Bob,

You will go to Disneyworld and have fun!

As noted, before the surgery, walk as much as possible and after the surgery walk a little more each day.  It sounds like ten weeks at least between your scheduled surgery and your plan to hike Magic Mountain.  If you walk a little more each day for more than 8 weeks, you will be fine!

As for pads and kegels,  the kids won't even have to know that you are changing pads when you go to the restroom.
"Kegeling" is another exercise you should start right away.
Most recommend contracting your pelvic floor muscles in three sets of ten -  three times a day to start.  The best way to identify these muscles is to stand over the toilette with a full bladder, begin to urinate and then stop and start it several times.  These muscles that extend from near the anus to above the penis are your pelvic floor muscles.
After you get the idea of which muscles it is, then do the exercise when not urinating as after the prostrate is removed, this activity can confuse the coordination between the unconsciously controlled valve (that remains at the base of the bladder and the beginning of the urethra) and the pelvic floor (kegel) muscles that you will use to support this valve (as women do).  After the surgery the pubic cavity will be greatly traumatized and the urethra will be shorter - both of which tend to cause incontinence.  The shorter urethra actually tends to pull the valve open for awhile - until things settle.

By week,10, statistically you will likely be in control - or 4 to six weeks from control - and at the very least able to manage any leaking discretely.

I believe Bluebird has some excellent quotes on Kegels from Dr. Walsh in the threads found in her signature.  I would suggest reading her thread and Dr. Walsh's book.
For more on Kegels and fighting incontinence discretely (I went to work after open surgery - at week 5 - on my feet all day - with full incontinence - and told no one.....), you might read my thread on "Zen and the Art of Symphonic Continence"
The easiest way to find/read such journey threads is to look at the third posting in Helpful Hints found as the second thread at the top of every page.

In most cases, open versus robotic surgery is not an issue.
open surgery takes most patients not much if any longer to heal than robotic.
Yes, incisional healing is a bit riskier, but keep the wound clean and dry as directed and most likely it will not be an issue.  As advised, just wash the area while standing in a shower with just soap and water.

Walking a little more every day, avoiding injury from lifting,
    and otherwise resting for about 3 or 4 weeks -
 - these overarching guidelines will most likely see you to Disneyworld in May!!!

Your Friend,

C^Cedar
ICTHUS!

Thia will almost a day surgery dude. You will sleep right through the thing so it will be harder on those that waiting for you to go to your room. Up and walking in no time. Listen to your doctor and caregivers. Ask questions. Rememmber pain drugs ususally means stop up the old plumbing make sure your doctor covers stoll softeners. Those little holes heal up real quick so they want be a bother.
Just keep going.

Surgery........... Monday, February 25, 2008       Hi ~   Bob & Loved Ones,   Thinking of you and sending special thoughts your way.…     We hope   “Our Journey” helps to guide you over at least one stepping-stone on your path.   Keeping you close… in thoughts and prayers.     “Our hands will be on your shoulders” special words borrowed from hamala   In Friendship,   ~~ * ~~ * ~~ * ~~~ )*&^%   Group Hug %^&*( ~~~ * ~~ * ~~ * ~~   From the 3 of us... Lee, Buddy, & Murphy     Threads started by:   Bob1949 Unfortunately "NEW" Cart before the Horse? Learning and Confused

Hello Bob,

I hope everything went as planned, and you're home resting-up. Try to look for the little victories at first; every day gets just a tiny bit better. Then the second week will be better than the first, and before you know it; "It's time to celebrate your recovery". Spring is just around the corner, and that's the official kick-off season for out-door BBQ!

Good luck, and have a Speedy recovery.

Glen