INCONTINENCE CONTROL: I have been... - Advanced Prostate...

Advanced Prostate Cancer

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INCONTINENCE CONTROL

ronronHU profile image

I have been dealing with this problem for about four years now, so today I tried something a little different. Instead of wearing a catheter condom & bag, pads, or wrapping the pathetic, teeny-weeny minnow in paper towels covered with a small plastic bag & rubber bands, I just wore a regular condom. I don't have any leakage at night or much of a problem while I am sitting at my desk; however, while I'm 'out and about' and in the gym I experience significant leakage. When I wear the catheter condom & bag for a couple of hours I rarely have more than a teaspoon of urine in the bag, so I'm thinking that the condom may help restrict the flow. Today I had a leisurely lunch at a mall followed by about two hours of shopping and when I returned home I had less than a teaspoon of urine in the condom. I am going to continue trying this while I'm out, and will keep y'all apprised.

My incontinence is a result of my robotic RP that was performed 17 years ago. I did well for 12 to 13 years. Kegel exercises do nothing for me.

Ron

78 Replies

Hi Ron,

Sorry to learn about the incontinence issue after so many years of BCR control with minimal SEs. That’s a real bummer. I have a close friend who had an RP twenty-one years ago and suffered incontinence immediately following the surgery. He’s been on ADT since his BCR at year five following the RP. He chose to have the AS installed. He’s told me that the surgery was painful, but the results were very successful. He’s in control of his urination again, so dealing with the incontinence has no longer been a primary focus of his day. Can you get an AS inserted? Hope you can resolve this troublesome issue. Take care, my friend.

Jeff

ronronHU profile image
ronronHU in reply to ragnar2020

Thank you Jeff for your kind reply! I would probably opt for the AUS if I were in The States; however, I have no insurance here and I dread going back for anything. I moved to Thailand shortly after my RARP which was a failure along with two other surgeries that were major mistakes. Various scans (in an attempt to monitor my PCa) over the years identified 'stuff' that never should have been removed. Lost a kidney at Baylor due to a common benign cyst, plus lymph node excision at UCI which did little to slow down the progression of my PCa. Had I known Tall_Allen prior to the LN surgery, I would never have subjected myself to it! He had mentioned that if it is identified in one LN, you most likely have it in others.

I just read your history and noticed that you were/are considering tE2. If ADT is necessary and you want to try tE2 gel, I can send you some. Richard Wassersug (my tE2 mentor has been using the gel for over 20 years), many others, and I are having great success with transdermal estrogen.

My best to you in this crazy journey,

Ron

ragnar2020 profile image
ragnar2020 in reply to ronronHU

Hi Ron,

Your geographic and insurance issues make resolution of the incontinence and insertion of a AUS difficult. Thanks for the offer to send along some gel. I may end up going in that direction when my BCR occurs.

I had a PSMA-PET scan at the LA VA in July ‘21, and the scan identified two suspicious areas in the prostate bed but not definitive tumor growth. The radiologist recommended an MRI as follow-up. I had the MRI at MGB last month, and the MGB radiologist didn’t definitively conclude that there was any tumor growth evidence present from the results of the MRI.

So, I remain undetectable from the results of uPSA and PSA testing, and I wait for the PSA to rise and then I’ll repeat the imaging processes. I’m inclined to use proton beam treatment to radiate any BCR tumors that imaging detects before moving on to ADT.

Fortunately, there are great advances being made in imaging technology so maybe treating BCR will not be limited to only systemic ADT treatment or nothing. If the radiologists can see the micro-tumors earlier in their growth cycle using improved imaging, then possibly the radiologists will be able to eliminate the micro-tumors before they can grow into killers. That’s my simplistic analysis of where I am now.

Jeff

ronronHU profile image
ronronHU in reply to ragnar2020

Hoping you don't have to do anything for many years!

Shooter1 profile image
Shooter1 in reply to ragnar2020

My BCR was treated in July with RX. All scans were clear but PSA though low was up to 12 day doubling time. Na-F18 scan showed 2 new bone mets which are what was Zapped. PSA dropping since then and test today should show if all is well. Life Is Good but anxiety at blood test time is a real bummer. Good!! test today PSA .28 and Alc/Phos 55. Lowest in years for A/P. and PSA coming down nicely from 3.0 in June.

ragnar2020 profile image
ragnar2020 in reply to Shooter1

Hi Shooter1

I'm curious about what scans you had done, where you had them done and by whom? By RX, do you mean radiation, and if so, where did you get that treatment done, and who did it? Are you using ultra-sensitive (uPSA) blood tests or traditional PSAs?

Best,

Jeff

Shooter1 profile image
Shooter1 in reply to ragnar2020

OK, standard CT and Bone scans with contrast at semi-local hosp. (Sand Point, ID). Yes, radiation... Northern Idaho Urology. 6 shots to "sitz" bone and sacroiliac jt. Regular PSA sat at 0.12 area for 3 years. Started climbing in Jan 2021. By June climbing quickly to about 3.0 before radiation. Now (at last scan- to be updated today) was 0.48 and falling..... Life Is Good, hope this mean dog is back in it's cage.. PSA 0.28 and Alk/Phos 55. Looking good.

Spyder54 profile image
Spyder54 in reply to Shooter1

Great News Shooter. These better scans are life savers. Good to know the source and where!

Shooter1 profile image
Shooter1 in reply to Spyder54

Na-F18 scan in Spokane, WA . Left that out....

TFBUNDY profile image
TFBUNDY in reply to ragnar2020

I too had a clear mpMRI then a Ga68 PSMA PET showed 2 active areas within the prostate. Biopsy set for tomorrow. Such fun....

Thanks for the tip - I'll pass it along.

ronronHU profile image
ronronHU in reply to Tall_Allen

Thank you Allen for your interminable dedication to all of us PCa warriors! I hope the condom suggestion may afford some men a bit of relief.

Cateydid profile image
Cateydid in reply to ronronHU

I’m heading home from work soon and can’t wait to suggest this to my husband!!! Thank you!

"The pathetic, teeny-weeny minnow." LOL!

My minnow.
ronronHU profile image
ronronHU in reply to Nameless999

Mine may be a centimeter longer!

Kaliber profile image
Kaliber in reply to Nameless999

Lol 😁

My male friend had terrible incontinence, I introduced him to Desert Harvest capsules ( I take for interstitial cystitis) He takes 3, 3times a day. No more incontinence. Their #1-800-222-3901. It,s wonderful

ronronHU profile image
ronronHU in reply to almeria

Thank you so much for the info...I am going to look into this product.

Kind regards,

Ron

Don_1213 profile image
Don_1213 in reply to almeria

There are a number of products that show up if I google "Desert Harvest Capsules" - most of them contain Aloe Vera.

This is a bit concerning: webmd.com/vitamins/ai/ingre...

"Side Effects

When taken by mouth: Aloe gel is possibly safe when used short-term. Aloe gel has been used safely in a dose of 15 mL daily for up to 42 days. Also, a specific gel (Aloe QDM complex Univera Inc) has been used safely at a dose of about 600 mg daily for up to 8 weeks. Aloe extract is also possibly safe when taken short-term.

Taking aloe latex or aloe whole-leaf extract by mouth is possibly unsafe at any dose. Aloe latex is likely unsafe when taken by mouth in high doses. Aloe latex can cause side effects such as stomach pain. Long-term use of large amounts of aloe latex might cause serious side effects, including kidney and heart problems. Taking aloe latex 1 gram daily can be fatal."

I'll admit to knowing nothing about Aloe - and how "Aloe "Verta" is different from the forms warned against above, but I would look into this a bit more before suggesting them.

A bit more digging turned up: nccih.nih.gov/health/aloe-vera

Well worth reading.

My male friend had terrible incontinence, he started taking Desert Harvest capsules and no more problems. You can find Desert Harvest Aloe Vera capsules on line.

Marshb52 profile image
Marshb52 in reply to almeria

DesertHarvest makes many capsules Is this Aloe Vera?

ronronHU profile image
ronronHU in reply to Marshb52

I believe so.

Your tips are always interesting. The similarities -- Grumpy is also 78 and has a history of LRP in 2002 with no incontinence afterwards for at least 14 years. All of a sudden one day he was peeing his pants when he got out of the car! I blamed it on Xtandi.

Apparently the "urge" to urinate at night wakens him many times so he gets no restful sleep. Each time he does pee some amount. Therefore I don't think a condom would hold enough for him to benefit from your idea...but keep them coming!

As a female, I often have trouble interpreting Grumpy's incontinence situation. He complains that frequent bathroom trips at night interrupt his sleep. He is enthusiastic about Myrbetriq.

Lately I have asked him lots of questions. Grumpy says that 50 mg Myrbetriq has helped him go without wetting the diapers all day and night. He only throws the diapers away as they get crumpled--not wet.

He tried Flomax and Myrbetriq 10 years ago for frequent urination and neither helped then.

However, last year his urologist insisted he try Myrbetriq for at least 40 days and it has worked for more then a year now. I am wondering if he should take Myrbetriq at a different time of day as he doesn't seem to get the "urge" as much during the daytime anymore. Currently he takes it just before bed. Maybe Myrbetriq could help you, too.

ronronHU profile image
ronronHU in reply to Grumpyswife

Dear Mrs. Grumpy,

Thank you for your interesting reply! Regarding Grumpy's frequent trips to the bathroom during the night, I wonder if the Myrbetrig is preventing him from emptying his bladder before bedtime? 'Urinary retention' is one of the side effects of that med. Men with BPH experience the same 'frequent urination' problem since they never completely empty their bladders. My thinking is that he should take it in the morning to prevent him from having accidents during the day. I spend about 20 to 30 minutes every night 'sitting' (I personally think 'sitting' is important) on the commode emptying my bladder completely prior to retiring, and can go 7 to 8 hours without a pitstop or any leakage whatsoever. I also think that trying to empty one's bowels helps before bedtime. I haven't tried Myrbetrig; however, it is on my shopping list for tomorrow.

Tell Grumpy that I said he should 'Cheer Up'...after all, we both have survived this long after being inflicted with this sh*t!

Hi Ron!

Having a similarly tiny or non existent Johnny , where do you find a condom to fit?

Bob

ronronHU profile image
ronronHU in reply to Break60

Hi Bob,

The boots that I am using are called 'ONETOUCH' and I bought the medium size which I thought would be way too big for my guppy; however, much to my surprise they fit quite well. The box has Thai writing on it so I believe they are made here. Perhaps "medium size condoms" in Thailand are the same as 'small' elsewhere...I wouldn't know since I haven't been with a Thai Ladyboy 'yet'! I do wear fairly snug fitting briefs which prevent it from slipping off in addition to a folded paper towel covered with a cut-down plastic sanitary napkin bag secured with a couple of small rubber bands that are about an inch in diameter. I tried the condom today by itself which actually worked fine. No leakage while I was out for over two hours. As I had previously mentioned, there appears to be less urine while wearing a condom.

Break60 profile image
Break60 in reply to ronronHU

Thanks Ron; since I use a pad, a condom shouldn’t fall off but when Johnny goes back into his cave in my scrotum the condom may panic from claustrophobia. I’ll try it any way.

BTW I’m recovering from a UTI I somehow got when E. coli got into my urethra. Felt like a bad flu plus blood in urine. Yuck. Antibiotics seem to have knocked it back.

Regards

Bob

I use a miniature light weight white plastic Vice-Grip..... and it's secured with a white plastic chain to my navel with a white rubber suction cup.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/17/2021 12:01 PM EST

ronronHU profile image
ronronHU in reply to j-o-h-n

Why does everything have to be "white"?

Kaliber profile image
Kaliber in reply to ronronHU

Yea …. What’s up wid dat ….?

ronronHU profile image
ronronHU in reply to Kaliber

J-o-h-n is kinda weird!🤣

Kaliber profile image
Kaliber in reply to ronronHU

KINDA …. ??? Yayahahahaya

he’s the master of alternative perspective. 👏👏👏❤️❤️

j-o-h-n profile image
j-o-h-n in reply to ronronHU

I am not weird..... just consider me Senior Citizen Spam..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/17/2021 6:46 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Spam …. That’s canned “ ham “ is it ?

😂😂😂😂

j-o-h-n profile image
j-o-h-n in reply to Kaliber

If it ain't ham, it's spam, and if it ain't spam, it's ham.

Canned spam can expand in cans............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 7:04 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

And Scram Gravy Ain't Wavy

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

And Beans are for Marines in Submarines to the Philippines.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 7:42 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Beans Beans the musical fruit the more you eat the more you toot!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

The more you toot, the better you feel, so eat your beans at every meal.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 7:54 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Now I feel dizzy ….

❤️❤️

SPEEDYX profile image
SPEEDYX in reply to Kaliber

That is the cannabis you take!

Kaliber profile image
Kaliber in reply to SPEEDYX

Lol … don’t I wish …..

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Now now don't fall like I did on Monday (got boo-boos)....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 7:44 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

You can’t fall down, if you can’t get up in the first place. Yayahahahaya. Be careful buddy,…. bad things can happen when people like us fall down. ❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

That's the truth........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 8:13 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

To Tell The Truth....Bud Collyer!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Mark Goodson and Bill Todman Productions....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:07 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Your the man!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

I think you meant "old man"...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:18 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Never!!!.....and Old Man and the Sea Spencer Tracy!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Ernest Hemingway.........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:31 PM EST

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

So listen to this. A friend of mine is shooting a movie and wanted me to be an extra last Monday dressed in a pink suit (as the devil) and in a movie theatre cashier booth. I was to glare at the main character (no dialogue) who walks out of the movie. Well all casts of movies have to pass a covid (rapid) test. So I went to a fast in and out medical facility and passed the test. So walking towards my house on the way home I tripped 5 feet from my house, hit my nose, chipped a tooth, hit my top lip, hit my knee and I think dislocated my thumb. So I was not in a mood to go up to Westchester and cancelled my role. I could have become a new "Badd Pitt". That's life.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:39 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

🤣.....our loss!!!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Autographs 1/2 price sale............

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/19/2021 3:43 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Great another gift down for christmas!

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Don't give one to me.....I already have one........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/19/2021 3:56 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

No worries ....I get you Manolis Michalakis greatest hits!!!.. Volume 2 figured you had Volume 1

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Thank you, you figured right...... I do have volume1 and all it says when you play it, is to play volume 2.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/19/2021 6:14 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

❤️❤️

Kaliber profile image
Kaliber in reply to j-o-h-n

Lol

j-o-h-n profile image
j-o-h-n in reply to Kaliber

So listen to this. A friend of mine is shooting a movie and wanted me to be an extra last Monday dressed in a pink suit (as the devil) and in a movie theatre cashier booth. I was to glare at the main character (no dialogue) who walks out of the movie. Well all casts of movies have to pass a covid (rapid) test. So I went to a fast in and out medical facility and passed the test. So walking towards my house on the way home I tripped 5 feet from my house, hit my nose, chipped a tooth, hit my top lip, hit my knee and I think dislocated my thumb. So I was not in a mood to go up to Westchester and cancelled my role. I could have become a new "Badd Pitt". That's life.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:28 PM EST

ronronHU profile image
ronronHU in reply to j-o-h-n

OH SH*T!

j-o-h-n profile image
j-o-h-n in reply to ronronHU

Yeah.....and I went out and bought a shit load of ball point pens for signing autographs and for give-aways.... My luck....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:43 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Holy $#@* …. well the good news is that you didn’t break your pelvis or a leg joint ( what usually happens ) … and you prolly escaped getting Covid with all those movie people milling around, even if they were testing . Then you have to go home and tell wifey you tripped and it was “ definitely “ NOT a bar fight. 😂😂😂

We are no spring chickens buddy, us seniors don’t fare well eating the sidewalk or slipping down icy steps. You better take care.

Sounds like it would have been fun tho, dang nab it. I’m glad you’re OK buddy ( after the swelling goes down and dentist visit ).

❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Thank you.....

So this top executive tells his staff he will be quitting and joining the circus. A few months later some of his old staff went to the circus and saw their old boss in the back of the circus sweeping and shoveling elephant shit. The old staff approached him and said you left a cushy job as executive to shovel elephant shit, why don't you just quit? The old boss says "What! and give up show business?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/18/2021 10:49 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

He’s with the circus because they don’t stay in town long. That quarterly audit is coming next month and he wants to get the hell out of Dodge.

Just say’in 😂😂😂❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

How true (from the voice of experience).

So a guy applies for a job at a large financial institution. At he H.R. interview they ask him what position is he looking for? He replies "CEO". They say we can't make you the CEO, guy says "Ok make me the President" . They say we can't make you the president "Ok make me a senior Vice President". Then say we can't make you a senior Vice President" Guy angrily says "I'll be a son of a bitch"... so they made him an auditor.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/19/2021 3:53 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Yayahahahaya no kidding …CFO. 😂😂😂

Underwear........(fashion conscious)

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/17/2021 12:13 PM EST

Ron,

I use a Wiesner incontinence clamp accompanied with a light shield. They are for sale on Amazon. I have no problem playing Golf, Tennis or working out. It's recommended not to wear it at night but I have done so in a pinch (no pun intended) At night I wear a regular pad because I get up 2 or 3 times . It is very easy to get use to and depending how much water you drink, you can go for two or three hours between urination. I don't drink liquids after 6 PM and this helps. I'm 76 and have been using this for two years. It's now second nature. Hope this helps . Good Luck

Thank you for your reply Bro! I have looked at the clamps, but they appear to be kinda uncomfortable...especially the Cunningham one. Prior to retiring for the night, I spend about 20 to 30 minutes 'sitting' (I personally think 'sitting' is important) on the commode emptying my bladder completely, and can go 7 to 8 hours without a pitstop or any leakage whatsoever. I also think that trying to empty one's bowels also helps before bedtime.

I had this problem primarily at night. I saw my Urologist and she prescribed oxybutynin 5mgx2 Problem gone!

ronronHU profile image
ronronHU in reply to Marshb52

Thank you!

sorry to hear about that - i was diagnosed GL 4+3, used herbs and supplements for a few months, brought my PSA down from 17 to 14 or so, then went on bicalutamide, finasteride and tamsulosin. PSA undetectable for 3+ years. I recently started doing intermittant Kegels (every other day or so) and the little incontinence I had experienced disappeared... and i drink coffee all day long, bro. But I still have my gland, so different situation.

ronronHU profile image
ronronHU in reply to JPOM

You are doing amazing well for someone that still has his prostate! I often wonder (however too late to even think about it) if surgery was a good idea? I think today I would choose either SBRT or Brachy. I had a GL of 9, but my PSA was less than 6 when I had the little bugger chopped out!

JPOM profile image
JPOM in reply to ronronHU

did you have the little bugger biopsied, to determine the extent of cancer? if so, i'd be curious to know what they found.

ronronHU profile image
ronronHU in reply to JPOM

That was 17 years ago and I can't find the path report. Just remember that it was T3a staging, neg margins, and no SVI. Doc did say that he removed left nerve bundle for whatever that's worth!

JPOM profile image
JPOM in reply to ronronHU

I had similar staging, also no SVI, according to the first mpMRI report i had done before i went for biopsy. All my docs tell me i'm not "treating" my cancer, just keeping it at bay with hormone therapy. well excuse me? let them take 3 pills a day that damn near wipe out their sex-drive and deny that's treatment! ha!

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