Incontinence Issues - 6.5 Months and Counting

Mike, Have you tried the Magnesium 250mg daily yet? Magnesium helps relax the bladder walls so it can hold more volume at higher pressures so as to take the pressure of the hair trigger sphincter. This works well for some but this may not be the problem for you, it is worth a try seeing as it only cost about 5 bucks.

PS: do not exceed the 250mg /day dose

I understand that completely, I was done witht he pads by 3 weeks. but I had to start shaking it hard and squeezing out the last few drops when I went...that was when I would leak was after I emptied the bladder and put it away I would drip a few more drops. Once I started that routine after every trip to urinate it was like physical therapy and the system learned what to do and I was done with the pads for good. but Good luck to you I am sure you will get there

ok data guys - I just started weighing pads today.  I am 6 days catheter free as of today, and still feel like a sieve.  the two pads today both weighed in at 40ml - I had one in for a 1 hour walk, and the other for 2 hours around the house.  seems like I am probably peeing more in the pad than in the toilet.  have any of you looked at this data as fraction of pee going to the pad? 

Mike, you are farther down the road than I am, so I can't give you any good advice.  At this point I am the one learning from you guys.  but I do wish you luck on that final last bit.

AB

AB: You are just starting down this road my friend. Yep, you discovered it. The pad to bladder ratio is not in the bladder's favor. I did not start measuring until about a 1.5 months after surgery. My bladder held nothing, nada. However, one day I was standing in my kitchen and when I was perfectly still I noticed I was not leaking. That was the first sign I was gaining control. The next time was many weeks later when I walked the 1 mile from my train station to work and I actually had the feeling I needed to void. Sure enough, I urinated for a whole 4 seconds. So it is a process with some notable benchmarks. Keep coming back with questions. Lots of us can recall the answers from experience so you don't have to travel down an uncharted road.

OK, anyone else with long term urinary issues have some input on the latter stages of incontinence recovery?

Thanks for the replies to date.

Mike S.

DaSlink: no problem. It is just killing me now to make such painstakingly slow progress combined with the fear that this may be as good as it gets. This is especially the case since I picked a very gifted, high volume surgeon with a great incontinence and ED track record. 95% recovery on incontinence and >80% for ED. Being just 57 yrs old I should fall into the range of being able to fully recover. However still leaking.

Hope to hear about other long-term experiences with how slowly or quickly this dribbling and weeping ends.

Thanks,

Mike S.

PS - When you cite Bethesda North hospital I assume that is not in the Washington DC area? Never heard of that facility.

Mike the hospital I talked about is in the Cincinnati area. The Uro-Doc that did my surgery has done over 1600 daVinci surgeries. It was a good thing too,because part of my bowel had attached itself the a hernia repair patch which was done in 2000.
I have every confidence in his ability(too late now if I don't) To get me through this. I am a little nervous about the possibility of radiation treatments,since my cancer was not contained. I just have to wait and see. Next PSA test is March 23rd.

Cyclingboy: I could have some weekend fun messing with your head, but I am by nature a kind and gentle person. (I would have insisted in my reply that you were in for a very, very long haul because after all, misery loves company) However seriously, at this point you really don't have any idea (none of us do) as to how long your incontinence will last. It might be a long road or a short one.

First order of business: slow down, breath and relax for a moment. I was in the same soggy shoes you were in 8 days from catheter removal. Every newbie on incontinence issue, foremost wants to know when will this nightmare be over? The short answer is, it is over when it is over. Time is your friend and enemy right now. Time is needed for your body to heal. Despite feeling ready to do stuff, the inside of you has been mangled, rearranged and reworked to give you the big yellow stream you paid so much money to your doctor to deliver to you. You have age on your side as far as healing and speedy recovery are concerned. Read the other posts on this issue. They all repeat the same mantra. It takes time to heal and the pelvic floor exercises help to recover sooner. The important thing to latch on right now is that healing internally is something you cannot control. You can control the number of Kegel exercises you perform. You can watch your diet. Control your exercise, sleep and other habits. But despite all this you cannot will healing to speed up. It will come when it is good and ready.

Find some humor in whatever situation befalls you. Some guys think it is funny to pee during a staff meeting without everyone else knowing it. Hey, whatever turns you on I guess..... I have done my share of cursing and crying over this and it has not made a bit of difference in shortening my healing time. I don't want to make light of all of this. It is no picnic and you will be frustrated, discouraged and pleased beyond words when you do see some progress. You will feel that it will never come to an end, even if that end is 5 weeks from now.

OK, 20 ml per hour so in a 12 hour day you produce 240 ml. My surgery was on July 20, 2010 and cath out on July 29, 2010. I am sorry, I did not keep pad data until Sept 3, 2010 which was around 1 month plus a few days after catheter removal. Recalling my early progress or lack thereof, I used and still use Depends Guards. I filled about 5 pads almost to the spill over point while awake (roughly 18 hours each day) I recall that a full pad could hold about 210 to 230 ml of urine. Oddly, if you filled a pad quickly it held less. If you filled it slowly, it would spread out and hold more overall. Recall lots of day with pads so full I waddled up the stairs to get to the bathroom to change it and clean up. Fun times...

By early September 2010 I started to keep track of my 13 hour work day and pad volume. I went back to work on August 16, 2010 which was 18 days after cath removal. All standing resulted in draining everything I had in my bladder into the pad. Sitting became the oasis for not leaking. I was lucky to get parking at work for 5 weeks so my serious 1 mile walk to and from my job to the train station for commuting started on Sept 20. Reviewing my pad data, I wore the same pad the entire day by the time I was walking again and my average pad input was around 125 ml each day. Pads were nice and plump and juicy by the end of a long work day.

I am writing way too long. To be brief, my pads input dropped to just over 100 ml in October, down to 43 the first half of November and to 24 during the second half of November. December was consistent at 17 ml per 13 hour work day. January dropped to 13 ml per work day and the first half of February I am at around 10 ml of fluid for a 13 hour work day. By HW standards, I am one of the "special ed students" in the prostatectomy class. Most guys get over this far sooner. However, some of us insist on dragging this out for as long as possible. Believe me it is not for the sympathy. We don't get much of that at home. Only a few of my work colleagues (women only) know about my special condition. They do convey positive concern that I recover soon.

One note of caution: Your immediate family will grow tired of your pad input reporting on a daily basis. I am only aloud to report my progress if I have something real to announce. Otherwise, the standard speech is, "try being a woman going through having a period on a monthly basis, not knowing when exactly it will arrive and always being caught unprepared when it does. Deal with blood instead and have it seep through your clothing sometime and see how embarrassing that feels." OK, I get it. If I ever had blood all over me I would claim I was stabbed by a crazy man and garner sympathy for the near fatal attack that I thwarted. My only defense against the potential embarrassment has been to wear black pants at ALL times. Despite the safeguard of wearing black. I never had an accident with leaking while at work.

So, keep me posted on your progress. Worried Guy will chime in as well since we are the unofficial pad weighing contingent in this group. Worried Guy is hard core and has the math and engineering skills to prove it. I am happy just to have a 1/2 month average let along complex statistics. It keeps us off the streets and busy. Need more very specific info that would bore this crowd to tears, I will provide a means to contact me for more support. Glad to be of help.

Take Care
Mike S.

Gentlemen,

Thank-you all.............for your posts on this incontinence issue.  I am just over 6 mos post-op and still hugely incontinent.  Pads are in the order of 6 or 7 per day.  I'm not weighing pads because it's virtually all in there.  Pad numbers may also be misleading because I use pads inside drugstore underwear.   At night, lying down, or sitting, I can feel the bladder store some urine.  If the distance to the toilet is close, I can void some of it, like an adult.  Otherwise, when moving, I have no bladder control.  I do Kegels religiously.   I guess my question is; Does anyone know how a former fractured pelvis might affect the outcome regarding incontinence?  My Uro said he had a helluva tough time with the surgery on account of old scar tissue. In fact I was turned down for DaVinci  because of the scar tissue and had to persuade an open surgeon to tackle the job.  I think on my next visit in April, he's going to want to start talking about an artificial sphincter.  Does anyone have any suggestions?  Similar to you all I really hate this current condition however, I would also prefer natural healing if it could be anywhere in the foreseeable future.  Thanks again.

Roy123

Dx 69

PSA 5.6, 5 of 12 cores positive,  Gleeson 4+3=7, Stage T2C

Surgery Aug 5/10, right nerve sparing

Cath out Aug 13/10

PSA Sept 16/10, 0.01, Nov. 18/10, 0.01

neg. margins, neg. lymph, neg. sem. vesicles

Mike,
I really appreciate your interest. I've read your reply several times. I think that it is excellent advice. Just to make matters interesting; the surgery was done in Canada (I'm not disappointed with the surgeon because he saved me from readiation) and I'm now wintering in Arizona . I've seen Dr Salevitz at Mayo, in Phoenix, and all he could talk about was AUS. I'll call them back to see if they have a specialist/therapist; although when I first called with the problem he was their recommended physician.
You say you still have a "small leak" and I truly hope that situation evaporates for you (pun intended) at the earliest.
Roy123