Am I doing anything right?

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I'm following all the threads here and they have been very helpful and many of them have taken the words right out of my mouth. Had I been able to experience the side effects of a radical prostatectomy prior to the surgery, I believe I would have opted out and taken my chances. I often wish there was a way whereby I could take my cancerous prostate back and go back to the way I was.
Yet,I know i'm doing better with regaining my continence, but sometimes I feel like I'm not doing enough. Its been 58 days since my surgery. I don't need any protection at night, though I do wear pads for getting in and out of bed, when I'm likely to leak, and of course, pads all day. I've started measuring my pad weight and find I'm leaking about 5 ounces a day, though yesterday was 7 ounces. I have no idea if weighing the pads tells me anything, though I think if I see it decreasing over time, maybe that will be the tipoff that its getting better. I'm using 3 to 4 pads a day, but they aren't filling up. It just feels uncomfortable walking around wet. What I find most annoying is when I step out of the shower all clean, and then drip urine down my legs as I'm drying myself before I can step into my underwear and put in my pad, or doing my kegels and not being able to stop the dribbling before I can get to the toilet.
Here are the things I've cut from my diet: Nicotine (nicorette turned me into a gushing spring), citrus fruit, chocolate, herbal tea (no more tea with honey before bed), diet root beer, anything carbonated, extra salt, cheese, most snacks.
I drink about 32 ounces of water a day. I eat watermelon and more watermelon and other non-citrus fruits everyday. I am getting alot of water intake. I do overeat now, since i have hypogonadism and am off of androgel and my testosterone count last week was 38. Low Testosterone leads to increased appetite, osteoporosis(which i've had), higher cholesterol (which I now have for the first time ever), weight gain (now 15 pounds overweight, that 15 pound gain in 2 months), depression, loss of muscle (my muscle is now fat). I'm absolutely miserable and the cancer being gone doesn't fix my depression. I live alone and cutting my friends out of my life hasn't been helpful either, but I'm not going to socialize while I'm still leaking urine into my depends, even if it takes a year to regain continence. If I never do, then I don't know what happens to my friends after that.
When I see my doctor next month, I will demand a prescription for Androgel. Numerous articles point to Testosterone replacement therapy for men with hypogonadism as effective in fighting a return of prostate cancer and improving continence. I just want to feel normal again without this constant brain fog. And I will get a prescription for Androgel one way or another. But my VA doctor will not prescribe it without approval from the surgeon. I feel like I will have to beg to get the approval, or find a doctor who has written articles about the efficacy of TRT on prostate cancer survivors. (I already found one at NYU).
I guess this is mostly a rant. I'm not happy with the choices I've made; but here I am and I have to deal with it.
Can anyone tell me if 5 ounces of urine a day is alot 2 months after RP? a sign of improvement? Anyone with hypogonadism back on Androgel? Have I cut everything out of my diet? (I don't even enjoy eating anymore). Anyone figure out how to eat a sodium free diet? Salt seems to be in just about everything. I generally don't eat or drink anything after dinner. Yet, its rare that I'm not still waking up several times a night. Generally, I sleep about 2 hours before I wake up with the urge. Does anyone know if drinking less water will hinder recovery of continence?
 
Not a man so sort of sideways advice but:
If you are fortunate enough to have friends, it's too bad to neglect them. They too will be going through perhaps the same sht or different sht that you just went through its not kind to not be with them.

Can you wrap a wash cloth around your penis when you get out of the shower to absorb a dribble when drying?

Bodies change and yours changing is just what bodies do.
I hope an anti depressant can be prescribed to get you over the hump and back to the best life you can. Best wishes and let us know!
 
Jim,

At 2 months (58 days)

Incontinence wise you are progressing ahead of the curve.

Mentally - I felt the same way - very depressed and struggling.

As MayMay wrote, do not neglect your friends. Call them and talk. Let them know that you are not ready to go out because you are leaking. The best thing is to be honest with them - hopefully it will bring you closer together. I had friends who brought over lunch a few times.

I carried a backpack with my pads and pullups every time I left the house. At 2.5 years, I have pads in my car as well as in the medium compartment of my backpack. I had the sling at 1 year and don't need the pads and pullups, but at 3 months I was leaking 40 ounces a day. I gave up sodas before surgery and reduced water intake down to 100 ounces a day after surgery (I was drinking about 150 ounces of water a day before surgery).

If you can walk and move, walk just around your neighborhood - Walking will help with depression, feeling trapped inside, and hopefully your weight.

A doctor should not provide you with testosterone until at least a year of undetectable PSA after prostatectomy.

Hopefully the doctor will recommend a pelvic floor physical therapist as well as a psychotherapist. Having an outlet to express our emotions is a must. This forum helped me a lot. I got the most psychological support from a lesbian couple who had taken care of one of their mother who had incontinence issues.

You are doing good.
Terry
 
The amount that you’re leaking after just two months is actually good, and everyone’s experience varies. I’m 8 months out from surgery, still leak some at night and need one to two pads during the day. When I go out, I just carry an extra pad in my back pocket. You should be seeing a PT who specializes in incontinence. I’ve improved very slowly to where I am now. Kegels are good but it can take time to develop the strength that you need. And there are techniques beyond the standard keels that can help. Be as active as you can to fight depression, maybe see a therapist to get you through this. I, too, get frustrated and down.
 
Jim I am 75 days after my RP and I am in the same boat as you. When I am working I fill my pad so badly within the first hour that it weighs my Depends down and leaks into the Depends. I also have been very careful about going out with friends but they all know my situation and if I’m going over someone’s house a carry a backpack with Depends and pads and a trash bag to throw my wet pads and diapers in and tie it up so they don’t smell. The entire process is exhausting but I’m alive for now. I am currently trying a clamp and it seems to work well as long as I relieve myself every 45 minutes or so. Beats feeling that wet pad or diaper. When I get home from work I remove it and put a pad back on. Not sure if the clamp is a good thing or bad but I haven’t seen anything on line that was negative about using a clamp and it’s not uncomfortable so I’ll continue using it. Hope this helps. Hang in there you are not alone on the RP journey.
 
Hi
I agree with Dr. Rick. Use a penal clamp. Painless and it works. I get mine from men’s liberty. I think I saw one at Walmart Pharmacy.
 
Hi Jim,
I'm 3.5 months post RP and leak 500-1500ml/day into pads so you're well ahead of me. BTW, I'm 76. It's frustrating feeling that you're marinating in urine all day. That said, I'm glad the cancer is gone. I've just gotten into the world of penile clamps. Found that the Uriclak works best for me. I also just starting PT last week. My Kegels are very weak, possibly due to a back injury so I'm hoping that the therapist can help. Good luck!
 
@jim1176
Jim, you're doing good. Talk to your urologist about the limited use of a penile clamp.

To control the dripping or surging of urine, get yourself a LUNDERG (spelled right) penile clamp, for about $39.00. Try Amazon or search on Google. I got mine on Amazon. Search sites and compare prices.

Men have an off-on valve at the bottom of the bladder. When sitting or lying down, the valve closes. When you stand up, the valve opens and you experience a surge of urine. If the bladder is almost empty, you will experience a dripping of urine as the bladder drips into the bladder.

Clamping the penis will take the place of the valve at the bottom of the bladder. So, when you leave the shower, apply the clamp and enjoy a non-drip evening for an hour or two.

I carry a clamp in my left front pocket all day, and in my pajama pocket at night. Read the directions thoroughly and practice applying the clamp. You may not be able to see how to apply the clamp, therefore you need to train yourself to apply the clamp by feeling, only. Learn to place the urethra directly over the round part of the bottom pad.

Then, bring down the top and click the latch in the 1st, 2nd, or 3rd slot. Not too tight! It may pinch the skin until you learn how. Blood will flow on the left and right sides of the urethra. Urine will not flow through the urethra.

You may find the 2nd slot to be ideal....but practice until you have it right for you.

Proper use of the clamp will stop all urine flow to the pads or whatever you have been catching urine in. Try the 2nd notch and see if that is too tight or if it is tight enough to stop urine drip.

You want to avoid bruising the tissue or the blood vessels or the urethra. It will take a few days of practice to get the settings just right. From then on, set at 2 or 3 or wherever and center the urethra on the round place of the bottom pad.

THIS WILL WORK, and it will help you to feel like you are in control. BUT IT WILL TAKE A BIT OF READING AND PRACTICE.

IN THE MORNING, the first thing I do before throwing back the cover is to apply the clamp BY FEELING...ONLY. When I stand up, I will feel the pressure coming from the bladder and it may sting slightly. Move quickly to the bathroom and prepare to empty the bladder into a plastic cup or the commode. (Using a cup is safer than using the commode.) Prevents wetting the pajamas you have pulled down.

This whole procedure will help keep you dry while you empty your bladder. Using the clamp will help you in grocery shopping, going to church, playing golf, and mowing the yard. Limit it to two hours or less. (Empty the bladder that often.) If the end of the penis gets cold, it is because blood flow has been cut off. (Avoid) Talk to your urologist about wearing a clamp. DO NOT WEAR A CLAMP ALL NIGHT!
 
Hi Jim.I'm 8 months post op. At 2 months, as you are, I was feeling really down about incontinence. I never weighed my pads but at that time I was on three a day but dry in bed at night, as I was from the start. 5 ounces a day doesn't sound very much to me. I found standing up from sitting or lying a real problem. At 3 or 4 months I suddendly, within a couple of days improved and found I was using only one pad. I am still on one pad but my incontinence has improved and I can now go for a drive, walk to and around the shops, go out for one / two hour walks usually without leakage. I would say incontinence is now not a worry to me and I would say that it does not affect me mentally at all. It is a slow road most of us travel and the best fuel is patience. 2 months is nothing and you probably will improve and even find you are totally dry in time. Give it a year and then if you still have a real problem you can consider surgery.I have cut out alcohol, caffinated drinks (other than decaf coffee and tea) and carbonated drinks. I know others are suggesting a penile clamp but my thoughts (everyone thinks differently) are that it may be best to let the body do what it is good at - repairing itself, for a while, if you can put up with that. Your body may think a penile clamp is the easy way out and overall progress may be hampered.I have been wearing washable incontinence underpants and pads since the catheter was removed. I pulled a pair of underpants on immediately as I was leaving the shower.I also bought a plastic urine bottle and used that as I was standing up. I haven't had to do either of them for about three months now. Keep positive. Speak to and see your friends. They will be missing you and also wondering how you are getting on. Seek help and perhaps counselling if you cannot keep on top of your mental health problems. You need top notch mental and physical health during these trying times.Try different pad. I have found Tena to be the best in the UK. They absorb well and retain at the edges. Good luck. Our thoughts are with you. Keep us posted on your progress.
 
thank you everyone for the suggestions. i do keep in touch with my friends via texting and they understand why i'm reticent about seeing them in person (and of course, they all say they don't care about that!) Thanx for the suggestion to wrap something around me when getting out of the shower. simple suggestion that didn't even occur to me. I subsequently tried the penile clamp and that's great for getting up, kegels and after the shower. I feel funny about keeping it on otherwise, because i am concerned it might block the urethra from healing as quickly. And i get it about having a cup handy when removing the clamp, as there is a bit of a rush of urine.
All of your responses have allayed some of my fears and I feel better that each of you took the time to respond and offer some advice.
 
@jim11776
Hi! Jim,
Good to hear from you. Although I use the clamp a lot, I have a great deal of respect for it. It's like a fire in the stove but no fire on the living room floor. I couldn't do without the clamp for certain activities and because I shy away from pads in favor of the external catheter and leg bag (condom catheter). The weakness of the condom catheter is that a seal must be maintained at the anchor point (penis head) to prevent it from slowly sliding off in a few hours.

(Don't stoop over to pick up a $100 bill on the sidewalk.) If the seal is new, it will probably hold. If it has a few hours on the meter, the seal may have weakened enough to pull loose and begin its slow journey to: "OFF!"

THE ISSUE OF FRESH, OXYGENATED BLOOD FLOWING THROUGH THE PENAL ARTERIES TO FLUSH OUT PLAQUE AND SCAR TISSUE IS AT THE TOP OF THE LIST. I haven't seen that issue getting any press. I will find Dr. Brooks and his lecture on that, soon. YOUR CONCERN IS VALID but it's also an issue that can be used if managed properly. CLAMP SHOULD NOT BE USED OVER A COUPLE OF HOURS AT A TIME AND SHOULD NOT BE TOO TIGHT SO AS TO BRUISE TISSUE & URETHRA.
 
@DanCarr Dan, one thing that has worked well for me besides getting the right size and properly putting it on are these wraps.
17bab12183ebb9e2d34eed8ed3713d46.jpg
 
@Klew11

Wanted to know the name for others to look up and find. From your link, they are called Medical Male External Catheter Fixer. I listed a couple of links from Amazon.


40 Pcs Male External Catheter with Urinary Drainage Bag Set Reusable Men Urinary Incontinence Penile Clamp Fixer Catheters Adjustable Fixed Belt for Patient Incontinence People



HSOSK 10pcs Male External Catheter Fixer, Male Urinary Incontinence Penile Clamp for Patient, Reusable Anti-Slip Off Fixed Belt



 
@thudson1965 THANKS for the info about the wrap and where to get it. Will try the wrap. I'm wondering if it will cut off urine while allowing blood to flow. (Continual blood flow is very important.)
 
@DanCarr speak with @Klew11 - he is the one who has used them. He gave me a link so I could get the name and more information.

Thankfully I do not need them. The knowledge of the product is helpful for others like me who get rashes from adhesive products.
 
@DanCarr Dan, you put them on snug, not tight. If it is too tight you will know the first time you try to pass urine.
 
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