Catheter out today---is this normal?

Whofan,

I had surgery 4/24 and catheter out 5/2...  We live about 1 hour from the hospital.  On the trip home I dribbled a lot and squirted a few times...  Had to stop at a gas station to change pads as the one I put on for the trip home was already soaked.

After we got home and I cleaned up a bit and relaxed,  I found that sitting quietly, reading or watching tv, I would not hardly dribble or leak at all.   As soon as I got up and if I didn't hold the kegals real tight, I would squirt.  Walking was a continuous leak/squirt.  I was not looking forward to sleeping that night.

Amazingly, when I layed down to sleep, I did not leak/drip at all...  I did get up 3 or 4 times during the night to pee, but could squeeze kegals and make it to the bathroom without leaking.

Things did settle down a lot over the next few days as I grew accostomed to circumstances when I would leak or squirt, and times when I would be fine.  A typical day, I would go thru about 6-7 pads.

For me now, and I am now 6 weeks past catheter...  Sleeping and sitting have never been a problem.  Getting up from sitting, sneezing, coughing, and walking still cause some leaking/squirting.  Each week, I experience greater lengths of time that I do not leak very much walking.  Mornings are best, and evenings are worst.  I did find that if I took a short nap just after noon,  I could get up and walk somewhat leak free for a couple of hours. I am now going thru 4-5 pads a day, but not worrying or being embarrassed about it. I keep an extra pad in a pants pocket with a plastic zip lock in case I need to do an on the fly change while walking or shopping.  I have gotten pretty good at changing a pad in the front seat of the car in a crowded parking lot... 

The important thing is DO THE KEGALS on a regular structured schedule...  Do not over do them, but follow your doctors instructions.   After awhile, throw in some elevator kegals (See Cedar Choppers thread for instructions).  And get LOTS OF REST.  When you are tired, you tend to leak more.  I still get frustrated once in awhile, but things are definitely better now than they were at the beginning...  Just not at the time schedule I wanted.

And the most important thing...  THE CANCER IS OUT and you have great chances for a continued long and fruitful life!  That is the #1 thing...  Continance and ED are #2 & #3...  And they take a little longer than getting the prostate removed...  Everybody has their own recovery pace, but the odds are good for us...  it just takes time.

This forum is a great place...  Plenty of threads on all kinds of issues we of the PCa "family" have had to go through...  Anf plenty of love, care, and support!  You can also ask questions and advice from our wives and support/care givers...  to get their perspectives from their side of the journey.  No question is dumb and no question is too intimate.

God Bless!

Ray & Avis

God Bless!

Ray & Avis

WHOFAN, as you can see by my closing, I am not so very far advanced of your husband in terms of when I had my catheter removed. I didn't have the extended stay you described, but did have some challenges with the catheter, not to the point of getting infection, but lots of irritation. I was ecstatic to get it out, but found myself almost totally incontinent that first day. I believe I posted some pretty negative thoughts vs. what I had seen posted by "the lucky ones". Of course there were equal numbers of Average Joes and folks that have continued to have problems (my thoughts and prayers go out to those guys). At any rate, I have gotten better every day, although I am still in quiet mode, mostly sitting in my exec PC chair with legs propped up on another chair with two pillows. I found early on that the same muscles I was exercising with the Kegels, if gently squeezed as I rose out of the chair, allowed me to get to the bathroom and void as opposed to the first day when I just dripped as you described. I now walk maybe a couple of miles twice a day and don't leak. I am feeling well enough that I often get out of my chair forgetting to tighten up a bit and have a spurt, but not a deluge. I never have issues at night. I am down to maybe 4 Serentiy for Men Guards a day. All this said, I would say looking objectively at the posts, I am middle of the road and your husband needs to let a couple of days go by before he starts to despair. There are plenty of tips out here that I feel indebted to all the giving folks on this forum. Read up and I wish you and your husband the best in his recovery.

Thanks to all of you that replied.  We have been reading the posts and feel hopeful.   As a wife, I just try to support, distract and hope things improve.  I'll stay in touch with you all and let you know how David does.  Last night he went through 4 diapers. 

 He was very discouraged.  Not happy in the least.

More to come....it's not over. 

Take care to you all and lots of luck to this amazing group of supporters, survivors and cancer warriors.

Cynthia

Hi Cynthia & David,   It breaks my heart to know you traveled these stepping-stones without us!!!   Your Forum Family… that’s truly what we are hopes you stay closer because the support here is so important ~ not only for you but for us too!!!!     Wonderful news about the pathology report!!!   Having the catheter out… is unique to each and every one of us… continue reading because Knowledge is Power ….     Yes ~ there are many postings that will help to make you realize that this is a normal happening with many.  I will add a few threads ~ but please continue to search for answers to your concerns… The most important thing right now is….. Do Not Get Discouraged.        Sending warm thoughts and gentle hugs to you as you continue to move forward… One~Day~At~A~Time     ~~ * ~~ * ~~ * ~~ * ~~~ )*&^%   Group Hug %^&*( ~~~ * ~~ * ~~ * ~~ * ~~ From the 3 of us... Lee, Buddy, & Murphy   (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)   Threads from Helpful Hints / direct links… Total Incontinence After Prostatectomy Argylegolf Total Incontinence After Prostatectomy GerryHE   Kegel Help? KW   Kegels - to pee or not to pee? pianoman   Incontinence After Prostatecomy Sparrow610   Incontinence following prostatectomy adb8s   Incontinence and Surgical Technique TimG   Incontinence very bad at 3 weeks post catheter removal Bill23   «   bluebird ~   Moderator for Prostate Cancer Forum Post Edited (bluebird) : 6/16/2007 2:36:43 AM (GMT-6)

For future readers… ~   Please make note of this… Yes ~ we need to follow our doctor’s orders… but we also need to know the results from them… once stated…   Partial Quote from Naimnut…. (see his post above and then read his thread below My surgeon said, start with 100 kegels per day I guess I overdid it yesterday.  Today I feel "tired" down there and am leaking a lot.  My wife has been concerned that I was overdoing it.  And so I probably did yesterday.   Naimnut’s thread.. click here..>   What does an incontinence "setback" after over-exercising really mean?   In Friendship ~ Lee & Buddy   «   bluebird ~   Moderator for Prostate Cancer Forum

The need to rest is surprising!  I find that every day I  need an hour nap, sometimes longer, and this is deep, deep sleep.  Today, surprise, surprise, I needed two naps!  I find that doing a normal outing, like going to the grocery store, or for one of my 30-45 minute walks really wears me out.

Its surprising because I don't look like there is anything wrong with me.

Tell David that the leaking will improve.  He's got to believe and do the walking and kegels.  It takes time and that can be very discouraging...  It will get better.

 

Hi Raheeb (JDS)-
Thanks! And thanks for your continued support. I think I need this community more than David! He relies on me so I feed him the information I find on this sight. I feel like he almost wants to forget this all happened to him....which of course, he can't!
So, here we are (I am)....
Plugging along.....

Hi Naimnut - Thanks for your post, too. It's good to see that this lack of energy is how it is for now for some post-surgery patients. We had some friends over today and he basically was wiped out from visiting after 2 hours. Visiting only consisted of him sitting in a chair, too! Well, in any case, I'll try not to worry too much. I do worry about the incontinence but I hope it will take a turn for the better soon. I remind David to do his kegels, etc. and he says he does them so I hope that is the case.

Thanks to spinbiscuit, survivor wannabee and mvesr and pasayten. I read your posts and feel hopeful.

Best to all,

Cynthia & David

Cynthia and David,
Don't get discouraged! After three or four weeks, I was sure I had done the wrong thing. I doomed myself to a life of pads and diapers, and was positive it would never get any better. How wrong I was! Thanks to the fine people on this forum, I regained the confidence to continue. Today (nearly six months post-op) I feel great, and am down to one small pad, which most days I change for hygine rather than fullness. The exercise and kegels are important, as well as the periods of REST! Both body and soul need healing time and the relaxation helps with both. David is lucky like many of us on this forum, to have a Life's Partner who is so supporting and caring. Take care of you, too. You are as important to his recovery now as any Doctor!
Best,
Mike

Hey WhoFan -- Keep hanging in there.  HE’S JUST UNDER THREE WEEKS OUT!  THE INTERNAL SWELLING HASN’T EVEN GONE DOWN YET AND WHEN THAT HAPPENS, HE MAY HAVE INCREASED INCONTINENCE FOR A WHILE, PLUS A FEW FUNNY SENSATIONS DOWN THERE.  Plus some depression and some worry and some tears, at least that's the way it was in my case.  It’s all part of the process.

My wife and I love to eat out and for several weeks post Da Vinci, we had lots of opportunities to go out, but she could see I was uncomfortable trying to sit down in a restaurant long enough to get through a single course.  JUST ONE MORE OF OUR FAVORITE THINGS WE WERE UNABLE TO DO TOGETHER!!  It was frustrating for both of us.

It just ached down there and wasn't fun to sit upright.  The City of Hope nurses advised me to try to switch from one "cheek" bone to the other while sitting, which would work, but only for so long..

And yes, Da Vinci, is “less invasive," but it is still major surgery and traumatic to the body.  Those are little wounds, but com'n folks, we were essentially stabbed six times (including the drainage tube)  and it takes time to heal inside and out.

Like your hubby, during the first three to four weeks I could never seem to get totally comfortable unless I was flat on my back.  But that's not good either.  He should be taking easy walks, doing a little light activity, maybe a little cooking, sitting for a while, pacing around for a while, light stair climbing (and I mean light!!!) etc.

For the rest of you who posted here, thanks for your comments.  Those first few weeks are a challenge, but eventually, we break through.  It's nice to know that I wasn't the only one wondering if I'd ever feel like my old self again. 

At one point, around week three, when I was really in the dumps, my wife came home one day and gave me this beautiful little seashell-shaped pewter box she bought.  It is inscribed with the words, “The Tide Always Turns.”
And the tide did turn.  I keep it on my desk -- it will always be close to me.

WhoFan, I think you will be surprised at how quickly the next few weeks will pass for both of you.
Tom

BTW – I’m a major Steely Dan fan and here’s a favorite chorus from their song, “Any Major Dude Will Tell You.” (Released in 1974).

‘Any major dude with half a heart surely will tell you my friend
Any minor world that breaks apart falls together again
When the demon is at your door
In the morning it won't be there no more
Any major dude will tell you

Any major dude will tell you’

Sounds good Cynthia:  I had to ask my wife to cut me a little slack too, during about week two.  She was all set to go to the mountains and do lots of other things the docs suggested would be possible witihin a short time frame.  She was trying to give me a little push, which was necessary at the time.

I was ready to hit the recliner -- period.   And I'm glad I did.

As time goes by things will get better.  As far as the ED thing, I'm trying to be patient there too.  It has been five months now and I miss my old favorite toy.  It's broken and I hope not forever.  I miss the spontaneity that was once part of our sex life.  The thought of taking a pill, pumping the pump, injections etc. makes it sound like a real production number.

If I had to guess, I would suspect that the last thing a lot of guys at your husband's stage would want right now is a rip-roaring erection or orgasm.  I was very leery at that stage because of how I felt down there.

Anyway.  We'll all get there.

I was laughing the other night thinking that if we ever all meet somewhere, we may as well all be naked, as we've certainly shed our veils in this forum!  No secrets here, among the men or women!  Maybe a meeting like that would create some vertical action for the fellas!! LOL

What a thought.  We'd probably get arrested.  I'll play the piano, but we'll need someone to handle the towel concession.  And please bring all of your unused opiates.  I will see that they are promptly and properly disposed of BZZZZZZZZZZZZ!!

HA HA HA!

Best ta ya.

Thanks Jon and Tom...

PATIENCE.....ahhhhh such a virtue.  Really is.  What did people do before they had these forums and were going through such traumatic medical experiences? Anyways, today David called to tell me he took a decent walk in the neighborhood.  I was happy to hear that.  We live with the fear that things will never be normal again.  Well, I guess things will never be normal again after this experience but what we mean is that there is a fear that the continence will not return.  That everyone says "hang in there...it will get better".....but, what if it doesn't?  The eternal optimist I am!  (LOL)  But, we need to have hope (faith?) that things will get better.  I need to..for David's sake.

Cynthia

Whofan, You may not want to hear my story since I'm one of the worst leakers here (KW's Journey). But just want you to know that no matter how long you leak you are not alone. You can get back to living. It takes adjustments and it can be very agravating at times. But this is what we have to deal with. I keep telling myself at least the cancer is gone.

Good Luck, KW