Will I need diapers post-prostatectomy?

2

Comments

  • DaveInAZ
    DaveInAZ Member Posts: 12 Member

    Hi EJ. I will share my experience with you. I had my Prostate removed robotically on July 10 of this year. Besides the cancerous legion on my prostate, my prostate was about twice the normal size. After removal and being tied back together, my Dr. recommended that I wear a catheter for two weeks due to the size of the prostate and the amount of stretching he had to do to put me back together. Other than dragging around the bag for two weeks and learning how to do the proper hygiene, you don't have to worry about peeing that is for sure. There were nights where I literally filled up the bag (had to be half a gallon at least) and I too was really concerned about what life was going to be after the catheter was removed. When it was removed, I did find that I had more control than what I was expecting. It was not the free flow I thought it would be. Oh I still leaked, quite a bit initially, and was wearing depend pullups, changing it about 3 times a day. However, my control improved rapidly so within maybe three weeks I graduated to the thick Depends liners that you stick to your underwear. I did not have to do that very long, maybe a week or two, and found that the amount of leakage really was not that much, so I am now wearing Depend "panty" shields and can wear one pretty much the whole day (putting a fresh one on before bed and then changing it in the morning).

    I have been wearing the shields now for several weeks. I still have an occasional leak, primarily when I stand up from sitting for a while, or when I sneeze or cough (I can sometimes hold it back when standing up, but I have little control over the little leaks when I sneeze or cough, regardless of how hard I try). It is enough to be a nuisance and keeps me wearing the shields. I think I am improving slowly but not quite ready to dump the shields.

    My life has pretty much returned to normal. After the surgery I was bruised beyond belief but that cleared up. I do use the bathroom a little more often than before, so I am always aware of where the restrooms are, but being almost 4 months in I can sit through a movie or go on an extended drive without any real problems.

    I know everyone is different. When I had my surgery I found the discussions on this board very helpful. Good luck with yours and hope it turns out well.

  • LuckyKYGuy
    LuckyKYGuy Member Posts: 17 Member

    That's encouraging for all of us….I'm 16 days post op and 8 days post catheter…I've noticed improvement in my 8 days and am hopeful to get to the place where you are in a few weeks. My Dr set me up with a pelvic floor PT that I see on Monday for the first time so once I start doing the exercises like instructed then I'm hopeful I'll start to see significant improvement.

  • lesjanes
    lesjanes Member Posts: 70 Member

    I had PT floor excercises 6 weeks post surgery. That combined with doing Kegel excercises daily pre and post surgery helped stop the dripping. My PT was a place called Team Rehab. They also had me sit on a React Table. A React table fires pulses into the area that needs the rehab. For Prostrate Surgery, the area PT would focus the pulses at was just behind my scrotun (I guess toward the perineum). After the React Table, then we would go into a pelvic excercise routine. I have been at Athletico in the past and do not remember them having a React Table. So I don't think all PT places have it.

    After 2 months I felt my steady dripping would never stop. But then at about 10 weeks is suddenly stopped. Hopefully you have the same experience.

    Regarding sex, I am almost 4 months out now and my penis is like Mars, no sign of life. LOL (slight exaggeration) But, my wife and I have had sex. I wasn't sure I could have an orgasm with a flacid penis. But I found out that the orgasm felt just like a regular orgasm.

    Good luck on your recovery. The people on this board have been a tremendous help to me.

  • EJ73
    EJ73 Member Posts: 12 Member

    I am 72. In good health, not overweight, exercise regularly. I saw the urologist/surgeon yesterday to discuss the procedure and side effects. Specifically addressed incontinence. As others have mentioned, he said recovery can vary widely, but cautioned that age is a factor. Did say that most recover complete ability to stay dry, but there are those that never do . (Yikes!)


    Thanks for the tips about keeping skin dry, etc. Another question (my wife has brought this up): What about disposal of diapers and pads? Did you get some kind of diaper pail? Did you tie up each item each time in a plastic bag? I don’t want the house smelling like stale pee.

  • EJ73
    EJ73 Member Posts: 12 Member

    Did any of you shave or trim pubic hair (or do they do that as prep for the surgery) so the hair doesn’t hold a urine smell?

  • Marlon
    Marlon Member Posts: 127 Member

    EJ73, a container with a lid is a good idea. It does smell when you open the lid. I did not bag each item, just rolled into a ball. When you get to the pad stage, the sticky side will hold a shape when you roll it up.

    All my surgical action (laproscopic, 6 incisions) was at the waist level. So I was not shaved beyond that area. Probably a good idea.

    Two things I was not prepared for: my scrotum swelled up like a coconut for the first few days. The other was how unexpectedly painful my incisions were. I had assumed laproscopic would be minor discomfort, but I needed the painkillers for 1 week post surgery. That made it hard to move around and sit or lie down comfortably.

    Pay attention to the instructions regarding bowel movements and the potential stress on your newly configured system. They instilled the fear of constipation in me, so stool softeners for a long time to avoid straining. The painkillers can contribute to that.

  • LuckyKYGuy
    LuckyKYGuy Member Posts: 17 Member

    I've just been using the trash can in the bathroom. We use plastic grocery bags as a liner and always have. So I just fold up the Depends as best I can into a ball and drop it in. As long as you take the bag out and replace it every couple of days the smell has not been noticeable. It also helps to spray some air freshener into the empty can on each bag change.

  • DaveInAZ
    DaveInAZ Member Posts: 12 Member

    A lot of good advice here AJ. I will add to it. As I had mentioned before I was bruised beyond belief after the surgery, it looked like I was wearing an inner tube. That eventually, slowly cleared up. Sitting was another issue. It was a challenge. The incision points were tender for a good two weeks after the surgery, and any abdominal straining was very uncomfortable, so I had to be careful what type of chair I sat in (a deep, plush recliner was the most comfortable chair I had but I could not get out of it without help). On top of that my scrotum was also swollen so sitting on anything firm felt like I was sitting on rocks. I bought a donut cushion and that helped, but I found that I could not sit for very long for a good month at least. At work I set up my desk so that I could work standing up for periods of time. However, all of that cleared up with time so no issues with sitting, bending over, or straining. I still take it easy though with lifting anything heavy.

  • DaveInAZ
    DaveInAZ Member Posts: 12 Member

    Oh and regarding the pullups I just put the used ones in plastic grocery bags, tied it up and put it in the trash. We really did not have any problems with odors.

  • lesjanes
    lesjanes Member Posts: 70 Member

    I had the back pain from the surgical gas. But I had no problems with my scrotum swelling or with the incisions hurting

    I only mention this to calm your fears that all this will happen to you. Everyones experience is a little different.

    I hope you don't get any of the side effects we have mentioned. But you certainly won't get all of them

  • EJ73
    EJ73 Member Posts: 12 Member

    Had my prostatectomy last week. Pain has been far less than I anticipated. I have not used the opioid pain meds, would describe it as uncomfortable rather than painful . I can’t handle sitting in a straight back chair for long, and prefer being in a recliner. This is because of pressure on the abdomen, not back or pelvic pain. The four incision sites feel raw to the touch and hurt when I bend over, sneeze, etc. I’ve not had swelling in the scrotum like someone else mentioned, or back pain.


    Three more days with the Foley catheter, then we will see about bladder leakage control. I am nervous about it, but I did start kegel exercises (found helpful YouTube videos) about a month before surgery. We’ll see. I will report back.

  • Wheel
    Wheel Member Posts: 162 Member

    EJ73

    Congratulations, one significant decision is now past. The abdominal pain when rising out of bed or sneezing is standard even with just one port. Not needing the opioid meds is a good sign. I will let you know the catheter coming out itself was a big nothing burger. I was kind of freaked out expecting pain as it was drawn out. I never felt a thing, over in seconds and I actually had to ask was it out. I never felt anything. Best of luck on your further recovery!

  • EJ73
    EJ73 Member Posts: 12 Member

    Thanks. Yeah, I’m not worried about the catheter coming out. I am very much looking forward to it. I had a Foley catheter for five days previously when I had a kidney stone. What I’m anxious about is how much or how little bladder control I will have in the first days, weeks, and months. I know there is a wide variance….

  • Marlon
    Marlon Member Posts: 127 Member

    Hang in there EJ73. The catheter removal is to be celebrated when it happens. The thing I didnt quite understand about leakage, is that it's not like a sudden gush of emptying your bladder. It's more of a persistent intermittent drip, and that you have to decide when to change a diaper or pad when it feels uncomfortable. Apparently, your kidneys produce urine in a steady drip and so it can move through your bladder as a drip, until you regain bladder control. The sudden drip urge when you get up or move suddenly

  • lesjanes
    lesjanes Member Posts: 70 Member

    I think you will find the catheter removal not a a big deal. I also think the leakage thing will be there, but not as bad as you fear. I am 4 months out and dry at 69 years of age.

  • ThomASH_082562
    ThomASH_082562 Member Posts: 7 Member

    Hello, I'm three days out of Lap.-Prostatectomy…I'm scheduled to have a catheter for 2weeks (Marvelous). My cancer was 3-4=7 on the Gleason score…had a 2-3% chance of it gone into lymph nodes…talked to Dr….he said lymphedema (if taking out) could be very problematic… so I'm hoping for the best…don't take them out. As I'm sure with you all, this has been very traumatic for you and your family, as with mine. I hope for 5-10 years… then cancer wins. Day to day, I hope (as you all do also) stable continence, return of physical intimacy—I personally will start Cialis 5mg daily….and pump….if need be….I will use the penis injections.

    I want to say thank you for sharing your experiences…I learned a lot.

    I wish you all well…it's a nasty cancer robbing you of continence, intimacy, and crushing for family watching strong capable men withered, struggling to have a piece of normalcy back…even if it is just for a few more years. God Bless you if you beat it.

    Keep the post coming…other people need to hear our experiences.

  • LuckyKYGuy
    LuckyKYGuy Member Posts: 17 Member

    Another thing I'll add to all of this….I recently had to travel to a convention where I had a four hour flight…which meant six-7 hours in the airport. I was concerned about how I would change a Depends in a restroom stall between the limited room, the often nasty floors and all of that.

    So, what I decided to do was wear an overnight Depends (a little thicker) and used an additional pad. I just placed the pad where it should go, but didn't stick it down with the adhesive. My leakage went to the pad and then I could just easily change the pad in the restroom stall without that big of a hassle. Just make sure that you get the pad and the penis positioned correctly and then also make sure you change out the pad when you feel it is needed. This way you can make the Depends last all day.

    It is a little bulkier, but not to the point people really notice and I took the approach that if someone notices I have on bulky underwear that's better than them noticing that I've wet myself and it is saturating my pants.

  • Wheel
    Wheel Member Posts: 162 Member

    Astronauts wear diapers for long periods

  • Old Salt
    Old Salt Member Posts: 1,530 Member
  • EJ73
    EJ73 Member Posts: 12 Member

    Got the Foley out about 30 hours ago. Now I can answer my own question. So far I am peeing normally with little to moderate leaking. I was prepared with pull-ups, tabbed diapers, and male incontinence guards. So far the guards have been sufficient. I feel lucky. Primarily, most leaking happens when I sneeze, blow my nose, etc. — I think this is called stress incontinence. No incontinence with urges. I have plenty of time to get to the bathroom. There is a little dripping after I go, but if I wait and wipe, I stay dry when I tuck away. So far I’m feeling fortunate. My pad stayed dry all night, but my bladder woke me up twice to pee.