The little stuff (hints and tips): life after surgery

JackWest

https://csn.cancer.org/discussion/comment/1724990#Comment_1724990

I wet the table during radiation treatment. My erections are now softer and smaller. It is not the same for sex and mutual masturbation. Ejaculation is less and with color sometimes. Some men share more ED details to relax and compare with each other.

Marlon

One tip I should have mentioned earlier as far as product recommendations. When I started recovery and had moved to pads and shields, I needed to replace most of my old loose boxers to get better fitting UW. I looked for non-cotton boxer briefs that fit snug to the thighs. The best UW I've found is from Duluth Trading Company, their boxers in the "Bullpen" line. They have a pocket on the inside to hold your privates but it also work well to hold pads and shields in place and in just the right spot. Otherwise, they bunch up or move around.

KittySlayer

One year update post RARP surgery.

PSA <0.008 and follow up with surgeon he was happy with my progress. I thanked him and his team again for a great job.

INCONTINENCE: No longer an issue. Able to stop wearing pads/shields. Do need to urinate more frequently and plan ahead. If you were caught in a Nashville traffic jam you may have seen me pulled to the side in rush hour traffic needing to pee alongside the road. Wear cotton boxer briefs in case of a dribble but not really an issue. Still wear the IRISmorii incontinence briefs when out in public for extended periods. Still wear black pants in public more out of a lingering fear than a real need. Incontinence was my biggest fear going into surgery and I am thrilled with where I am and will happily live the rest my life at this level.

ERECTIONS: Wake up with the occasional morning wood but spontaneous erections are not there yet. I would say when I get an erection it is 90% firmness for a short period. Libido is not what it used to be which I guess is okay since I’m unable to perform. Prior to surgery my wife and I discussed this and knew going in we would need alternative ways to show our love for each other.

KEGELS: Since my incontinence is no longer an issue I’ve stopped twice daily Kegel exercises and no do them a couple times a week. No longer using penis pump. Still taking nightly dose of Sildenafil 100mg.

ADVICE: Thanks for all the advice from participants on this forum. Was able to pay it forward last week by meeting with another man who had upcoming surgery and lots of questions. Men are sometimes stupid/stubborn about medical care but be smart, ask questions, share experiences, and listen to your doctors.

Wheel

Don’t know if you saw my post about the best time. I am similar with my surgery being just a little longer ago18 months. You don’t mention if you pop something like Viagra, but through trial and error, although I could get firm, I just don’t believe my stomach was truly empty after three hours say in the afternoon after lunch or bedtime after dinner and found out that if I got up in the morning 90 minutes early and did not eat and popped my Viagra and that i did not wait any longer than the 90 minutes it was the firmest and held for the occasion. I believe your morning wood in the morning is why this timing works.

Wheel

I missed your Sildenafil comment, but maybe skip a the night before and pop the 90 minutes before in the morning

Wheel

Your sildenafil I believe is Viagra, maybe skip your night dose and pop in the morning

capecodder

I am scheduled for RALP on 3/31. Doing kegels daily and will start with pelvic floor specialist next week for prehab work prior to surgery. Working out, walking, core exercises and will try to keep it up until D-day. What advice to others have for how to get through catheter time (tear away sweatpants, long shorts, sleep in a recliner, type of bed pads, etc.)? Thanks.

Wheel

Capecodder,

Don’t know if you caught my catheter tips posting last month, certainly everyone has tips that worked for them. Go ahead and review and hopefully others post more and you can pick and choose. Fortunately the catheter is not in long, more an annoyance if you hang around home for the week and don’t plan major outings.

capecodder

Thanks @Wheel ! I will review your previous posts.

Khaffey

Good luck with your surgery. As of February 11th I am one year out and incontinence is a non issue. As far as the catheter goes, I didn't find it to be such a big deal. If you use the leg bag, sweat pants or shorts will be fine. If you use the large bag, I found gym shorts worked best. I had no leakage with the catheter, but I used a mattress pad under the sheet anyway. The first few days after surgery are the most difficult. I was comfortable in the recliner and slept in bed. I have an adjustable bed which made it much easier to get in and out of. After a few days you start feeling better. For me, the first few days were rough but not unbearable. After a week, my catheter was removed and I experienced very little incontinence. I came home from the doctor's office in a depends but after that all I used were shields for a while. Walking is very important for your recovery. I used a treadmill every day. Once you start to feel better, each day is an improvement.

capecodder

Thank you, @Khaffey! Your advice is very helpful!

KittySlayer

I found sleeping in the recliner worked well for me.

When you leave the hospital take a the hospital urinal with you. Then you can easily drain the catheter bag into the urinal while seated. My private nurse (wife) would help me sometimes.

Some loose sweat pants or pajamas or shorts work well.

Mattress pads are helpful until you build confidence although I really didn’t need them very long.

LuckyKYGuy

https://csn.cancer.org/discussion/comment/1726180#Comment_1726180

There were a couple times during the week of the catheter, especially toward the end, that I felt like it was basically “rubbing or pulling” a little bit at times like it was caught on the edge of the opening of my penis. I just use a little tiny dab of Ky jelly and it stopped it.

I mainly used the large bag and just hung around the house. No leakage and slept in bed.

it’s more just a pain in the **** to lug the thing around everywhere. I did have a few bladder spasms but my dr prescribed be something which eased them when they’d occur.

I worried for a week about the removal but it was actually painless.

KittySlayer

Keep the tip of your penis clean and as Lucky noted a little lube helps.

capecodder

https://csn.cancer.org/discussion/comment/1726191#Comment_1726191

Thank you!

capecodder

Thank you!

TurtBean

@capecodder - I had my prostate removed five weeks ago. I was of course worried about the four biggies of cancer in general, incontinence, ED, and the catheter, having never had one before (I’m 59, BTW).

The catheter turned out to be a non-issue, more or less. I did have to have it flushed while I was still in the hospital, to clear a clot blockage…not a big deal - they just squirted some water up there and that was that. No discomfort.

Also, upon discharge, the nurse did a really poor job of strapping the catheter to my leg. While there, I had a sort of elastic band fastened around my leg, just above my knee, with a little clip for the tube coming out of my penis.

That was great - no pain, barely noticed it. When I left, though, he restrapped it with this sticky circular thing to my upper thigh, and it allowed zero play in the tube - it actually had my penis pulled far to one side, and the opening of my penis pulled open, constantly. OUCH!!!

That caused me great discomfort, and on the way home, I leaked out of my penis something awful. It was painful enough, I had to go to my local ER to get it restrapped back by my knee again - 15 minutes’ work, $700!

So…make sure you’re comfortably strapped before you leave the hospital.

At home - I never bothered with the leg bag. Since I was only going to have the thing for 8 days, I just left it connected up to the bigger bag (which was something several people there at the hospital recommended anyway - less chance of contamination changing bags).

Wear loose pants, like sweatpants, and wear well below your incisions because those will be sore for a couple of weeks. Set up a footstool or something low to hang that bag on and let gravity do its work for you.

At night, I tried the recliner, thinking it would keep me from moving around, but ended up sleeping (by myself) in the bed, and just hung the bag on the bedrail. I did have two episodes in the recliner where I peed with such force and in such a great amount, I overwhelmed the drain tube and had leakage. I eventually figured out the bottleneck was the little contraption where the tube entered the bag - it wouldn’t open enough to take a large amount of urine at once, so I ended up fastening a binder clip to the back side of the bag, which forced that entryway open and that solved the problem.

Drink a lot of water. Drink all the water they recommend. Flush that bladder. Don’t sit for too long, get up and move around, walk (slowly) on a treadmill, all of that will help with bowel movements.

Lastly, I was worried removal would be uncomfortable - it was a breeze. First she extracted the balloon thingy with a syringe, didn’t feel it. Then she put some water into my bladder, just felt some mild pressure. Then she said, “1…2…3…,” and pulled out the tube - completely painless, and the water she squirted in, plus extra, came back out, into a waiting container, to be measured.

That was it, cleared to go home, with an adult brief and a pad fitted inside (you’ll want both - call ahead to see if they’ll provide any of that so you can bring your own if they don’t).

You can get a better price ordering Depends from Amazon, and I’ve found the best price on guards just locally at either Walmart or Kroger. Get them ahead of time and bring a couple with you on the day you have your catheter removed.

After that…the real work begins (incontinence and ED and healing) - good luck!

Turt

capecodder

https://csn.cancer.org/discussion/comment/1726207#Comment_1726207

Turt, thank you for this information! I have heard from others that how the bag is strapped makes a big difference. Do you know why you couldn’t go home with the elastic band just above the knee and the clip that worked well while you were in the hospital?

How are you doing at week 5? Thanks again.

TurtBean

https://csn.cancer.org/discussion/comment/1726210#Comment_1726210

For the catheter, the nurse said the gentler (my word) strap above the knee was better suited for my overnight hospital stay, as I wasn’t moving around, so my penis wasn’t really flopping about, causing discomfort at the tip.

He said the smaller clip fastened up close to my groin was meant to hold my penis completely still while I moved around…sounds great in theory, but not so much in practice. It was a constant irritant, even when sitting motionless.

When I did go to my local ER that night (and I understand every hospital/doctor/nurse is different), the nurse told me they never use that type of clip, because so many patients complain about them.

Week 5 - I was planning on posting a sort of introduction post, but I can give an update here…the immediate after-effects of the surgery (abdominal pain, perineal soreness, slow bowel movements) are either gone or going. I do still use a cushion in my office chair and in my car, because my perineum is still a bit tender, I do notice my genitals feel…different, but hard to explain - maybe just a little sore. My bowel movements are slowly (key word) returning to normal.

That leaves the biggies, incontinence and ED. The former, I’m still 100% incontinent. Main issue is a constant drip, drip, drip while standing - I’m never really dry, which is quite annoying. Then there’s the gushing after sitting or lying down.

It wouldn’t be so bad if I could have periods of dryness between periods of wetting myself, but it’s that drip, drip, drip that never goes away. I do my kegels every day, though, and am starting pelvic floor therapy next month, and I also know everyone is different - some go right into no leaking, and some take months. My surgery lasted five hours, the surgery said there were some delicate bits in there, and maybe that’s slowing my recovery a little bit.

Not stressing over it, I have a hellaciously positive attitude, and it’ll work out.

ED - really early days for that yet, but I’ve been on the low-dose nightly generic Viagra for about a week, and I just started with a vacuum pump (that’s now my bag, baby!), so we’ll see. I’ve always been an “average” guy, and my resting penis does seem a little smaller, but in truth, penises have a mind of their own, and sometimes, they look tiny, and 10 minutes later, they look bigger (not meaning an erection), so who knows? I know it the pump, it definitely gets back to the erect size I was used to before surgery.

Haven’t tried any fun time with my wife yet, we’re in no hurry to rush things along - we’ve been through serious health issues before (hers), and so we have the mindset that sex isn’t everything in life, just a part of it.

Any questions about how surgery went, whatever, just ask. I’m an open book where medical stuff is concerned. I have no shame/embarrassment and will tell anyone anything at anytime!

Turt

TurtBean

@capecodder - one last thing - don’t panic if when you get home you notice your scrotum has swelled to the size of the Goodyear blimp and your penis all but disappears for a while. It’s normal. It’ll got back down after a couple of weeks.