Looking for help or experience with incontinent issues

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RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/25/2009 10:36 AM (GMT -7)   
I'm looking for help or any experience anyone can give me with the incontinence issues I am currently having.  My surgery was on Jan 20th and the bag has been off for 8 weeks today.  When I am sitting or laying down, I seem to have control of the bladder but as soon as I get up to go to the bathroom, it's like a valve opens up.  I generally stand for a few seconds, do a few Kegels and start walking but immediately I start to void.  At night, I am up 3 or 4 times with an urge, but I have trouble holding it in with only about 7 steps to the bathroom.  If I have to walk more than 10 steps, I immediately start to void.  During the day there really is no urge at all like I feel at night.  All this depends on how much water I drink and I'm told I should drink more!.  At least at night, I am somewhat under control because I am close to the bathroom.  I am currently seeing a Physical Therapist and going through Biofeedback sessions.  She has me doing Kegels everyday and her concern is that I am not relaxing enough. She wants me to drink more water, but if I do this, I might need to move into the bathroom so I'm only drinking around 16 to 24 oz's a day.  I'm staying away from all alcohol and caffeine . She said we may try electrical stimulation down the road.  Has anyone had any success with the electrical stimulation process?   My  doctor (not the urologist) recommended I try Detrol LA again to relax the bladder.  I'm trying this now but I was on Detrol before my surgery due to a frequent urge problem.  This did help somewhat prior to my surgery. I'm trying it again though.  When I'm home, I'm currently using  1 or 2 underwear Depends pads a day because I am not drinking a lot of water.  When I'm out, I go through 2 or 3 male guards which I insert into the Depends pads for a quick change.  I have not tried the male guards just in the white briefs yet as I am afraid I will leak through the briefs.
 
Has anyone experienced the same issues I am having and if so, what was the result?  Have you done anything different then what I am doing?  How long did it take you to get off the pads?  Two of my friends recently had this surgery and both were off the pads at 8 weeks.  One friend was my age, 66, and the other was 50.  I know age must have something to do with this process but I felt I was in good shape working out 3 or 4 times a week at Lifetime Fitness and biking 30/40 miles from time to time with a group.  If there are any road bikers out there, I would like to know your experiences as well.  How long did you wait to start biking again? 
 
If I don't improve in 3 months or more, I guess I might be in line for an artificial sphincter but I'm not keen on something artifical in my body.  Has anyone had experience with the artificial sphincter? 
 
Appreciate any help anyone can give me with answering my numerous questions or concerns.  Thanks all.
 
RFP

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/25/2009 1:57 PM (GMT -7)   
RFP...we are all different when it comes to gaining continence again. I still wear a pad during the day and I am just short of six months out. You are somewhere around the 2 month mark and this maybe normal for you where you are at right now. Just keep doing what you are doing with the kegals and follow the advice of your therapist. Contrary to what some may say...I do believe that drinking a tad bit more fluid to relearn to expand the bladder without the urge to void will be very helpful. Right now there is the urge with very little bladder volume and it takes time to get past that sensation of wanting to void frequently with only a partially filled bladder. I doubt very seriously that you would be a candidate for the artificial sphincter this soon out...I think the rule of thumb was around 12 to 18 months. There are several here that have had the device and can chime in on their story. I know it's hard right now and very frustrating...but give it some more time. I don't have any feedback or knowledge about the Biofeedback methods or the electrical stimulation...but I wouldn't discount looking into it if I was in your shoes. It may improve the conditions for you.

Take care,
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/25/2009 2:32 PM (GMT -7)   

Les, thanks for the reply and support.  I went into this operation thinking I would be back to normal around 3 to 6 weeks.  I did not do my homework.  I will continue doing the Kegals as my Physical Therapist recommends and I'm going to start drinking more water to see if that helps any.  Just wish I could figure a way to get that valve closed when I stand up or get out of a car.  I will let you know how I progress and you get well also.

RFP


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/25/2009 2:46 PM (GMT -7)   
RFP...I should also say welcome to the club that you didn't want to join. Glad you are here though and as you go through the healing process you may have many more questions or concerns. You can't find better folks to share your journey than right here. This place is truly the most friendly and warm hearted folks I have ever met. When you get a chance, maybe you can post your stats in your signature area so that other folks and new friends can see and relate to where you are at and often times give you more specific suggestions to a particular question that would be better suited to you specifically, than just a generic answer.

Again welcome to Healingwell
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/25/2009 3:30 PM (GMT -7)   

Les, See below stats for myself that I am aware of. Thanks for the suggestion

Age 66 at Diagnosis

2007 PSA 3.0

Nov 2008 PSA 5.3

Dec 2008 PSA 5.9

Gleason (3+3) Stage T1C

Robotic Surgery 1/20/2009

PSA 2/25/2009 0.04

PSA 5/25  ?

RFP

 

 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 3/25/2009 5:59 PM (GMT -7)   
Hi RFP,

I had my surgery in December 2008 and like you I had bladder control while sitting or lying down. I remember the first time I got up during the night. I completely lost control and voided all over the place. I solved the problem by Keeping a container by the bed which was immediately available when I got up. It worked really well.

It's more than three months after surgery and I'm upbeat at the progress I'm making even though I'm taking longer than many others. I progressed from using the container to making a mad dash to the bathroom, and finally I can get there at a normal pace. Progress is gradual but is clearly taking place.

This past week I obtained the Afex Incontinence System. This is a pair of underwear briefs with a collection cup and bag. So far it's exceeding my expectations. It's comfortable and works effectively. I lead an active life, cycling, walking and running. Like you I like the road bike and hope to do at least one century ride this summer. So far I've only used the bike on a trainer since my surgery, but haven't noticed any problems. The Afex system has given me the freedom I need to live the lifestyle I had prior to surgery.

Before I got the Afex system I had problems at work because the men's room is 180 paces away. There was no way I could make it and after being seated at work for an extended period of time I would flood the pad I was wearing almost to the point of leakage. I solved that problem by keeping a bottle to relieve myself in and hiding in a closet. A bit of a risk being caught. Presently I find I can make it all the way to the men's room early in the day, but not quite as the day progresses.

As I said, I'm upbeat with the progress I'm making and I would venture you will experience the same. Hang in there, be optimistic about the future, and I'm sure it will go well for you. It certainly beats going down the road we were on before surgery.

Bob
Age 69, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin

Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative

First post PSA < .1 Jan 16 2009


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 3/25/2009 6:39 PM (GMT -7)   

   RFP.  I understand where you are comming from.  I was using 8+ FULL Depends Guards a day for two years before I finally gave in and had the AUS.  It was the best thing I could have done.  BUT, I would not rush things.  I would give your body a full year to try to adjust before going for the AUS.  I would also look for a for a doctor that installs these on a weekly basis.  You can e-mail me at the address listed on the profile and if you want I will talk on the phone to answer any questions you may have IF the time comes that you are thinking of having the AUS.

    Hang in there and holler at us anytime.  KW


    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.
    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2455
   Posted 3/25/2009 7:56 PM (GMT -7)   
RFP,
I had my surgery 6 weeks ago. I was dry at night after the first night and while sitting down during the day. However, like you standing up or doing any walking caused leaking. I started going to a therapist and doing Kegel exercises every day. I'm seeing great improvement. I still wear a pad during the day but, I can walk and exercise with very little problem. Keep doing your therapy and be patient. Each one of us is different. My doctor said that it is normal to use 2 pads after 8 weeks.
Age: 67
Retired in 2001 and living in Austin TX.
PSA 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/26/2009 10:27 AM (GMT -7)   

Ed C, KW, Bob-Pa69, and LV-TX,

All, Thanks for your replies and support.  Appreciate your comments.  My real best time is at night when I get an urge and am up 2 or 3 times and make it 7 steps to the Bathroom and early morning.  This morning I drank 8oz of water and 2 8oz cups of decaf coffee (I really miss the coffee) and tried standing up from around 7am to noon.  I mentioned earlier that I leak when I stand up from sitting, so I thought to myself, I will not sit down and see what happens if I continue standing.  I was ok for the 1st couple of hours but then I started leaking or voiding a little.  My Therapist has me on an hourly "go the the bathroom program"  and she has asked me to write down amount of voiding (SM,MD,LG) , amount of leaking (SM,MD,LG) and when I leak and what I was doing.  Anyway, its a good thing I'm semi-retired that I have time for all this documentation. I'm still on the same PAD from 9am last night until 1pm today so I'm not going through a lot of Pads ( I just deal with the wetness)  When I'm out this afternoon, I will have a new PAD and a male guard so I can change the guard on the fly if things get bad.  I'm not going to let this get to me and I will be working out and biking in another month or so.  I will just call the wetness "sweat".  Take care everyone.

RFP


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/26/2009 10:41 AM (GMT -7)   
There you go RFP...get back to your normal routine in life with a positive attitude...pretty soon all this will be just a distant memory.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06

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