Incontinence after surgery

Hey Pratoman,

I will address the second question as best I can. A diaper is worn instead of underwear. A pad is something you place inside your underwear but you must wear briefs and not boxers.

Pratoman,

When I had supper with you the other day I was wearing both. Generally the word "diaper" is used for "incontinence underwear" when one wants to add an edgy note to ones complaints. "Depends" and "Guards" are the dominant brands of the underwear and pads, respectively. I'll use those brand names here but there are others just as good. Most of us here on the forum who are big-time leakers wear Guards inside our Depends. The Guards catch most of the flow and can be changed easily when full. The Depends are for safety and they give you an extra couple of hours if no restroom is convenient. Extra Guards are easy to tuck in pockets and they can be changed without taking off your shoes. Changing Depends requires one to disrobe.

There are guys who leak worse than I do. I am dry when laying down and mostly dry when sitting. Days spent on my feet doing manual labor are the worst. When I cut up a downed tree in my yard with a hard-to-start chainsaw I went through a lot of pads. I leak 300 to 500 ml a day.

But I do stuff. I travel for work. I travel for pleasure. My work associates never suspect anything, nor do my travel companions (with the obvious exception of my wife). I've done multi-day visits to Florida theme parks, I've toured Alaska on a bus, I've gone snorkeling off a crowded excursion boat in Hawaii. The logistics of managing the pads are a constant concern. I constantly check my back pockets to make sure I have extra pads before I go out. But it can be done.

As I recall, after we had supper we both hit the men's room at the same time. Bet you didn't notice that I used the waste can twice -- once for a rolled-up pad and once for the towel after I washed my hands.

The vast majority of men who have surgery get dry inside a year. I represent the most severe incontinence it makes any sense at all for you to worry about -- and with the level of surgeon you are talking to it probably doesn't make that much sense -- and I can tell you that even if the worst happens life goes on. Incontinence sucks, mind you -- I am scheduled for surgery to get an artificial sphincter next month -- but life goes on.

Thanks a Peter and Tom. Very helpful, and encouraging.

And Peter, great explanation on diapers vs pads, and now I know what to buy if I have surgery and when I go shopping to prepare.

And you are right, I didn't notice at all that you used the waste ca twice.

Hey Pratoman,
It is Sunday so today is a worry day of rest.
Here are the rough post surgery odds:
2/3 of men will be continent at 3 months.
of the remaining 1/3, 2/3 of them will be continent at one year. Of the remaining leakers about half will have follow up surgery.

When I was leaking a lot I wore Diapers and stuffed in a pad. Diapers cost $0.45 a piece and pads are about $0.14 and take up less space. I could carry a pad in each of my sport coat pockets without anyone noticing. That is not possible with a diaper.
I totally hid the fact that I had surgery, and was incontinent from my coworkers.

There is an interesting unmentioned benefit to all this. A diaper stuffed with a pad presents a spectacular package profile to the ladies.

Good luck,
Jeff

Buddy,

Get yourself some Lupron! If it was smaller, you wouldn't care anyway.


But in reality, I did not suffer that supposed side-effect, as the nerves were not spared. You have to have something to measure ....

142 well, I figure a guy's got to know "the long and the short of it". :D

@Jeff - funny re package for the ladies.
I'm not too worried about the cost. I figure I was able to afford diapers with two kids, I can manage it now for what will hopefully be a short while.

I was dry at night from the start, however, I used a thick pad (not a diaper) for the first 2 months then switched to a thinner one for another month or two. I played golf and exercised without any problem the whole time. I wore jockey shorts to hold the pad in place. I carried an extra pad with me if I was going to be away from home for long periods of time. I even travel to Australia (14 hour flight). wearing the pad was never a problem.

Pratoman,

I hope you take more from the positives in this thread rather than the negatives. I have been holding off on responding, because I represent a negative, but you asked for experiences, so here it is.

I am your worst nightmare. A combination of PeterDA and 142, but I should stress at the outset, that I believe my issues are more to do with RT than surgery alone.

I was originally diagnosed as GL 9, so my Uro told me he would be cutting wide and warned that it was likely that I would need radiation. As it happened my post op Path was revised to Gl 7 (with tertiary 5's), but I had broken the capsule so radiation was prescribed.

Post op (August 2013) I was incontinent, but with diligent Kegels, things improved and by Christmas was "virtually" dry. i.e. mainly dry but with occasional slips, wearing precautionary pads only and on some days dry, but others maybe a pad or two.

I was keen to start radiation - lets get these little cancer cells before they escape my pelvis - was my rationale, so happily accepted a radiation program beginning in January. BIG MISTAKE!!

By March I was completely dry, but then in May, while lifting some heavy paving stones, I had a major accident, and things have gone downhill since then. Slid into major incontinence, losing over 300 mls per day (5 or 6 pads).

On top of that my stream became slower and following a cystoscopy discovered that I had strictures. Also developed a rectal burn with bleeding around the rectum. Very painful. Thankfully, that has now improved but the stricture and leaking continues.

My Uro referred me to a stricture specialist who did another cystoscopy and following that I went into complete retention. No peeing and of course no leaking. You would think that would be a relief but believe me retention is worse than incontinence. Ended up with a urethral catheter which was very unpleasant, and have now had that replaced by a Supra Pubic Catheter (SPC) which is much better, but also the leaking has returned. I am also intermittently able to pee normally.

So now I have the worst of all worlds. Sometimes retentive, always leaking and have a moderately uncomfortable catheter for the foreseeable future.

Because of the catheter, I have to drink copious amounts of water to keep the urine clean and free of sediment, so I now leak even more than usual. Yesterday I went through 10 pads!!

This has had an enormous affect on my social life. I am a keen golfer - even live on a golf course - but that is out of the question. Cannot drink alcohol beyond one glass of wine for fear of flooding. Very reluctant to dine out or visit friends because of the difficulty in managing pads (particularly disposal)

Travel, which my wife and I love (have visited 30 countries at last count) is completely out of the question.

Am now faced with a urethroplasty to fix the stricture (Google that if you want to make your eyes water) and then a 12 month wait before I can consider an AUS. The Uros tell me that my extent of leaking preclude the option of a sling.

Sorry it is such a glum story and as 142 said, remember that I am in the 2% of failures and my issues arose from the RT which I don't imagine you will require.

To return to the positive, given your stats and the top quality surgeon which I know you will have found, your surgery, if that is what you choose, should go very smoothly and like 90% of guys you will regain full continence in a very short period of time.

Good luck.

Chas

Hey Pratoman
I leaked from day one, leaked sitting in the car on the way home. That was day one. It slowly got better. The first few months if I walked I leaked, sometimes enough to fill a diaper in 15 minutes, soak through my pants and get my socks wet. No fun. I did kegals and at 45 days or so I started wearing guards. At first 3 a day, now its one per day and on many days they are pretty dry. It takes time, the mantra you hear here alot is walk, kegals, water, rest and patience. It works!

Pat

Hello Pratoman,
I am one of the not lucky ones on the incontinence issue. I had the robotic surgery in March 2014. I still leak 100-250 cc per day and wear either the Depends underwear or the Depends guard. I used the Depends underwear exclusively at first as it felt like I could prevent any outside leaks easier. I have since learned to
use a Depend guard inside an athletic jock strap to keep it snugly in place and that works good also.
My biggest problem is with exercise and working in the yard and golf. Everything goes through me when I do
those things. Sitting or lying, I can accumulate urine in my bladder and empty it when I go to the toilet.
I keep seeing all those posts of "no pads" and am very disappointed with my situation. But, as one of the
other posters said "life goes on" and you just do what you have to.
My urologist has said I need to start thinking about what we need to do to fix my problem in the future at the May 2015 visit. He explained my options for incontinence as
1) The "collagen" injection to beef up the sphincter or
2) Sling- He wasn't that excited about the sling or
3) AUS artificial urinary sphincter
I am ready for something but the waiting is to see if my PSA goes up and then I would require radiation.
After reading all the posters on this and another board, it seems like the odds should be with you to get
over the incontinence.
Good luck to you

Pratoman
My sig. pretty much spells out my situation re: continence. I used depends diapers for a few weeks then switched to pads with briefs. I bought four pairs of Duluth Trading boxer briefs which do a great Job of providing support and holding the pad in place. I'm now 15 months post open RP , 4 1/2 months post SRT, and 3 1/2 months since my last 22.5 mg lupron shot.

Ocassionally I have urgency where I have to run for a bathroom to urinate or have a loose BM which I attribute to latent effects of radiation and/ or ADT. None of this is caused by RP.
Bob