Managing incontinence

[chickgreen]

For those of us who are not continent, what are you doing to manage the occasional rashes, areas of irritation and spots that become sore due to being moist all the time, or being irritated by the hem of the diaper?

[Echotango51]

I got tried of all the leaking and the rashers after five years. Had a AMS800 implant.

[chickgreen in reply to Echotango51]

I'm only 4 months in - I don't think I'm ready for another surgery yet, and the Dr. says there's still hope...

[Echotango51 in reply to chickgreen]

That’s good, keep doing your kegals.

[chickgreen in reply to Echotango51]

Yeah - I also have two physical therapists and their exercises. I was doing pretty well, I though. Then came abiraterone/prednisone

[fzpinc1 in reply to Echotango51]

You could try using a clamp.

[chickgreen in reply to fzpinc1]

Thanks - I have been considering purchasing one for those times that I need to be sure that I won't leak...

[infinitiq70l in reply to fzpinc1]

I use a clamp and I play tennis, golf and work out 3 days a week. I do not wear it at night and get up 2 or three times. The clamp becomes second nature and I urinate on a regular basis. Occasional I leek but nothing substantial. Great alternative to using three or four pads a day. Purchased on Amazon.

[Kaliber]

I use 1% hydrocortisone cream on my skin irritations and rashly red areas .. clears it up fast.

😁😁😁

[bluepacifica]

My husband uses Desitin and lots of neosporin. It seems to work as well as can be expected. He uses over 500 pads a month so changing frequently helps, too. He's 100% incontinent.

[chickgreen in reply to bluepacifica]

Not long ago, I would have questioned what it means to be 100% incontinent vs. just incontinent. I do hope that your husband is doing well.

[bluepacifica in reply to chickgreen]

Yes, unfortunately with this disease, we all learn so much. Getting pads through Amazon prime subscribe and save really helps! He leads a normal life through all of this and is very active. All the best to you, Chickgreen. (love that name)

[chickgreen in reply to bluepacifica]

But wait! It gets worse! My son, who would like to become a professional drummer, is.... Chick Green. And my late father, when he was young...

[bluepacifica in reply to chickgreen]

Finish the story! What about your father?

[chickgreen in reply to bluepacifica]

Also Chick Green. All three of us are Charles J. Green. My grandmother used to talk about her 'little chicky'... You can only imagine our credit reports!

[bluepacifica in reply to chickgreen]

I was thinking "boychik".

[garyjp9 in reply to bluepacifica]

I also recommend Desitin

[bluepacifica in reply to garyjp9]

Completes the circle of life, doesn't it?

[garyjp9 in reply to bluepacifica]

👍

[MrG68]

What’s quite good for that type of thing is collodial silver gel. The gel keeps it in place and is soothing as opposed to the liquid. There’s a brand called Argentyn 23. More isn’t necessarily better. The 23 is the ideal concentration of silver apparently. Apply at night before sleeping. You can get cheaper brands but this one is the best from my experience.

It’s also very good for healing skin in general.

Some of the ointments/creams have antibiotics in them as well, just so you know. Don’t know if that’s any concern.

[chickgreen in reply to MrG68]

I will look for that

[London441 in reply to chickgreen]

Powders help. Kegels/pelvic floor exercises may help. Ointments and other gels may help.The sling works well for some, but not for heavy incontinence.

Be honest with yourself. If you are still heavily incontinent after a year or more (or however long you can stand it) I concur with Echotango51. The AUS may be a last resort but it is beyond awesome if you’ve had no improvement for extended time. Heavy incontinence becomes more and more miserable over time.

I liken it to a hip replacement; a lot of people who have zero cartilage left try to get by without one, limping around in ever greater pain. Nearly every person I’ve met that has one says they wish they’d done it long before.

[chickgreen in reply to London441]

I'll keep it 'in my back pocket'. I am only 4 months past surgery, so there's hope still. The doctors want to do a round of radiation on me, and I've been told that the radiation basically halts the healing process. So, I'm stuck between wanting to complete the course of treatment, and wanting to not be incontinent. I have a conversation scheduled with my MO and this will be one of the primary topics, and I will also be putting in requests to talk with radiology and my urologist to get some more opinions.

[London441 in reply to chickgreen]

4 months is early for sure. It is true that once you have radiation your progress is pretty much done. I would only advise -if you were to go ahead with radiation if not for the incontinence-that you do it regardless of your concerns about the incontinence. Disease eradication/control should win!

[chickgreen in reply to London441]

Hence the convo with the doctor - I'm RARP 2/11, Lupron, Abiraterone+prednisone and undetectable PSA and testosterone. We know that at least one lymph node was hot, and the surgeon was unable to get all of the material out that he wanted to. So it's a balancing act - to soon and quality of life may suffer. To late, and life will suffer.

[London441 in reply to chickgreen]

Great luck to you sir! How we wish these Pca decisions were easy and straightforward.

[chickgreen in reply to London441]

Sometimes I wish someone else would make decisions for me!

[MrG68 in reply to chickgreen]

Argentyn 23 Professional Silver First Aid Gel - 2 fl oz amazon.com/dp/B004MGJ2HU/re...

[Hidden]

I use Aquaphor healing ointment.

[thudson1965]

Another good barrier cream in addition to Aquaphor healing ointment is below with link to Amazon, but is available other places - just google search.

3M Cavilon Durable Barrier Cream Fragrance Free 3.25 ounce (92g) Tube (Pack of 2)

Link from June 4, 2022

amazon.com/dp/B00XQFA736/?c...

[bluepacifica in reply to thudson1965]

I just ordered some for my husband. Thank you!!!

[keepinon]

There is still hope for your incontinence. I was told that after a year, it is what it is, but I improved quite a bit from year one to year two. Worked with a PT and used electrical stimulation up the butt. Sounds worse than it was. Now 3 years out I have an occasional squirt here and there but no pads. I have to watch my alcohol intake though. 2 drinks ok. 3rd, the faucet opens! Good luck to you!

[chickgreen in reply to keepinon]

Yeah, I haven't done much drinking yet...

[Johnson411]

Like echotango51, I’ve decided to have the AUS implant. I’m 12 months since diagnosis and 8 moths post Radiation (EBRT). Still in Abaritarone and prednisone. I’ve used 10+ pads per day and not improving. Surgery will be scheduled soon.

[chickgreen in reply to Johnson411]

Good luck and I hope that all goes well for you. I'm not that many pads per day, 4 to 5 on the worst days, and I'm only at the 4 month mark. My doctors are trying to schedule me for EBRT, but I've been resisting a little because its my understanding that the radiation basically stops the healing processes. I'll be having conversations with my doctors about that this month...

[Johnson411]

Thanks for the response. I didn’t have much choice due to the extent of the spread. I did wait about 10 weeks post TURP for the EBRT. The radiation may also do damage to your urethra and sphincter. Best of luck.

[btca]

Had my RP July 2019, salvage radiation of prostate bed Nov. Dec. 2019. (No physical side effects from the radiation. Started ADT Dec. 2019, still on that today 2022-6-4. Last PSA 0.01 . Had the rash issue before the RP, I perspire---- in the crotch, not helpful! I have used Desitin 40% zinc oxide. This product has proven best for the rash. I have used "Selenium Sulfide" lotion as a wash for skin irritations , scalp, and crotch, seems to help clear without causing additional irritation. As mentioned by others, frequent gentle washing-- with the Selenium lotion is helpful. Incontinence has gradually lessened to just the infrequent stress leak. O' yes, have switched to boxer shorts, a few years ago.

[chickgreen in reply to btca]

I had asked at an earlier appointment, how long they expect that I will be on ADT - I did not get a great answer, and frankly I am having a difficult time with the emotional aspects of treatment. Kudos to you, for being able to last that long! And apparently you have been able to reduce the incontinence after radiation - thats good to hear - thanks!

[btca]

There are others on this forum that have been on ADT much longer. People have different situations, PC degree and drugs used. I have dry skin, some loss of body hair, (not where that would be helpful), some HOT FLASHES! at random , sometimes inconvenient , times, and of course a tendency to gain weight in the stomach area... Mostly am OK with my situation now.

[j-o-h-n]

Greetings chickVaseline.

or A & B ointment. Cover area first...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/04/2022 9:56 PM DST

[Bcgkelly]

Are use a nappy rash cream called bepanthen and it works for me when a cream for jock itch and a Hydrocortisone did not.

[Blueslover]

Find to right product for you - it should stay pretty dry. I use Poise extra long maximum absorbency during day, and Tranquility Premium Overnight briefs at night (Carewell products).Hope this helps.

Hugh

[chickgreen in reply to Blueslover]

Haven't heard of that brand - I will look them up