Today marks two weeks post prostatectomy. I have my first follow up appointment tomorrow where the doc will remove my Foley. The first few days were rough. There was significant pain, but the opiates helped a lot. Five days went by before the first bowel movement, which was awkward and a bit painful but they are getting better.
My big concerns, like everyone else, is incontinence and erectile function. I'm doing Kegals, though they are bit more uncomfortable while the catheter is still in. Regarding potency, I was disappointed that the tumor had reached the margins on the left side and the nerve bundle was not spared. So I was pleasantly surprised when I noticed some firmness and lengthening when I wake in the morning and at random times in the evening.
My first question to the group is, does this indicate hope for regaining function or is this some other involuntary process unrelated to typical arousal signals?
The second question is what should I expect when I have the Foley removed? Should I bring a bag full of Depends and pads with me - extra pants in case of leaks, etc.? I have a 45 miniute drive to the doctor's office and don't want any accidents in the truck.
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jaybojammer
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Make sure that you will get a cystogram also called a cystography or urethrography before catheter removal. By this x-ray test the tightness of the anastomosis is verified.
Yes in my view it indicates hope you will have recovery. I had also one side nerve spared but I started feeling anything a couple of months later. For me it took 6 months for regaining reasonable potency and with daily medicine. Be patient here.
As for incontinente, it was quicker and in 3 months I was wearing no pads anymore. For the first day, go prepared with a bigger pad as it may be very nasty. But again, don’t lose hope and your body will heal and recover.
All the very best to you. My RP was 28 August. When I was at your stage, anxiety was my biggest problem. Will I be cancer free, dry with an erection function?
It takes time, patience is something that is hard.
I got myself lots of support - a physio who specialises in male continence, a doctor who specialises in sexual function recovery. A counsellor who listened to my fears.
What you can expect is, unfortunately, not knowable until it happens. Some people are pretty continent from the first, other people are not. But if you wear a diaper (in case you need it) it won't get completely filled up in a 45 minute drive no matter what, so you should make it home just fine. Even at my worst it was three diapers a day, which means like 8 hours each I guess (I was one of the unlucky ones as far as incontinence). Here's hoping you're on the lucky end!
Oh boy!!! The two weeks after Foley removal were among the worst in my life. True despair. I got thru it; you will too.
Your bladder will probably be empty after the catheter comes out. The ride home a Depends or a pair continence briefs should suffice. I wore an adult diaper to bed the first night. After that (I had no more adult diapers) I wore Tena or Willow brand incontinence briefs. Continued Kegels twice a day or more. Pretty useless that first week though.
I bought a yard of fabric that had vinyl in the center and flannel on either side. That went on top of the mattress and under the mattress cover. I bought cheap puppy pads at a discount store and laid them on top of the sheet. Can't say I actually ever needed them but I did need the peace of mind.
I pissed the bed twice, both times under the influence of low dose naltrexone ( which I stopped).
I stopped the Willows five month after surgery and simply put a guard in my briefs. Guards DO NOT work with boxers BTW. I stopped the guards last month and now have just a layer of Cotton briefs between me and my khakis.
Your early tumescence is a very good sign. I would push (hard) for 60 three times a week of sildenafil to promote the blood flow.
Everyone's experience post-op is different in nuanced ways. (age 67 at surgery, Gleason 4+3 post-op, no margins, no nerve involvement; I am 2 1/2 years post-op). First of all, it will get better. It will take time. Incontinence may last 2 months, then stop, or continue to a greater or lesser degree (I get minor stress incontinence, some leaking after coughing for example).
I hate to say it, but if the nerve bundles were not spared, natural erection is not possible. But there are other ways, and other folks here will probably share them with you. But that is down the line.
For now, do your Kegels.
Yes, bring Depends or wear briefs with an incontinence pad. I was not told this, and had lots of leakage after removal. Removal itself is very quick with some discomfort for a split second.
Recovery takes time. Just be patient. Keep getting regular PSAs and thank goodness this part is over!
Your definitely going to need some depends, remember, your not supposed to hold it for the first three days. If you feel it coming, let it flow, and sometimes you wont feel it coming. Drink Lots of water after foley removal, you want to make sure pee is flowing from bladder thru urethra to penis. I had to have catheter reinserted 3 days after removal because of retention, which for me was swelling where urethra was reattached to bladder.(and not drinking enough water) Your going to pee a little everytime you get up from a chair or out of the car for about a week. (that was my case) After a couple weeks I didn't need the depends and used only the guards. For regaining erections my surgeon prescribed cialis to be taken every night to increase blood flow to that area, about 2 months until I actually had sex. My doctor didnt tell me this, but I found it very helpful to take advil every 4 to 6 hours for first few days after catheter removal to help with swelling of urethra and peeing easier
Thanks for the response, Wade. I did not hear anything about "if you feel it, let it flow." from the doc or nurse. I did have to get up last night and this morning four or five times. I usually made it to the bathroom with only a few drops leaking as I got in and out of bed. I did notice that if I don't get up at the first inkling of pressure, it becomes extremely painful on my way to the bathroom. Maybe I'm waiting too long. I think I'll take your advice and void at the first sense of need.
Let me second what "justfor" recommended (and what your surgeon should have scheduled you for): a cystogram. It's a simple x-ray test to ensure that the urethra is healed before removal of the Foley. It is painless. Also you should be on Cypro antibiotic in advance of the cysto.
Cipro scares me. I took it before and after the biopsy. List of side effects indicate that it is known to cause achilles tendon ruptures. I don't see the need for that aggressive an antibiotic for that procedure. I had a cytoscopy and wasn't given any antibiotic.
I think you take just 5 doses in 5 days, my recollection. Cipro got the bad rap as a result of the anthrax scare as I recall. I took it and had not a single side effect. It is a precautionary antibiotic, and is the surgeon's choice to prescribe.
I didn't have any side effects with short term use either. The side effect warnings are nevertheless eye-opening:
"Warning
Fluoroquinolones, including ciprofloxacin, are associated with disabling and potentially irreversible serious adverse reactions that have occurred together, including tendinitis and tendon rupture ..."
I've never seen that particular warning with any other prescription. I seem to recall hearing another guy on this site complaining about dire complications with longer term use.
The price we pay for rX drugs: side effects. Some are indeed frightening. I hear narrators rattling off possible side effects for tv-advertised drugs all the time: tuberculosis, non-Hodgkins lymphoma, even death. They show people looking so happy and fulfilled while they threaten them with cancer or worse! Cipro's side effects are no worse-sounding than lots of the latest "miracle" drugs out there. There's no such thing as a drug with no side effects. Typically the serious ones are limited to extremely small numbers. Purportedly. The thing is to look at the benefit/risk ratio. Is the (small) risk worth the (greater) benefit.
How much you'll leak, for how long, how often, after the catheter is removed:
. . . Unpredictable.
So bring the Depends, etc.
I'd guess that if you're showing _any_ erectile activity, that's a good sign. But again, "full recovery (as much as you'll get)" takes a long time, and the endpoint is:
I took pads with me. When the catheter was removed the nurse took care of matters. But then you need to get home. Initial weeks back at work were filled with frequent trips to the restroom. Eventually things will settle down.
First of all do not wear new shoes when they take out the foley... you may drip....
Taking out the foley is like an American soldier stationed in England during the WWII... it involves a "Quick Yank".... it helps if you yell "Geronimo" at the exact moment the nurse yank's out the foley.
Make sure you bring along a few Depends, if you're really concerned about leaking... then double up on the depends under your jockey briefs....
Buy yourself a rubber mat from a health supply store and place it on your bed for nightime leakage. (If you wish you can buy a rubber mat that matches your rubby ducky).
Now, now. Don't be exaggerating the foley catheter removal drama. Once the balloon that holds it in place gets properly deflated it's no big deal. On the other hand, a supra-pubic catheter removal -- that feels weird indeed. That's the one that gets drilled right through your gut into the bladder. Eeeew Been there and done that for HIFU.👀
Thanks john and everyone for your responses. I really appreciate have this group to talk to.
The nurse removed my Foley and said "This is going to be a rip-the-band-aid-off technique. Take a deep breath." It stung a bit, but then is was over. Before she removed it, she added what seemed like a cup of saline water to my bladder. Once removed, she handed me a jug and said to urinate in it but do not push. She said that was to test if I could void on my own. I did and it almost felt normal.
Congratulations..... Normally we have a get together "fuck Mr. Foley" party but right now are funds are down to zero....Wish our psa was that low......Take care and stay with us...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 11/22/2019 5:29 PM EST - JFK assassination 1963
What hurt more than the foley removal was when the surgeon pulled out the little bag that collects fluids post-op. That hurt enough for me to yell. Extremely painful--but short-lasting.
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