HealingWell
Search Close Search
☰

preparing for continence recovery

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/22/2017 11:10 AM (GMT 0)
I have not made my final decision for treatment but leaning towards surgery. Incontinence is the one SE that concerns me so I am trying to be best prepared for it. I am nearly caffeine free, which is a big deal for a retired Navy guy! I don't drink alcohol. I just read in Michael Korda's Book Man to man, that avoiding carbonated beverages is recommend?

Have others heard that and what additional recommendations do you have to be in the best place for continued recovery? Denis
Posted 10/22/2017 11:34 AM (GMT 0)
Denis as you know I am almost 6 months post RALP and still experiencing incontinence.

Best advice I can give you is start doing the kegel exercises as soon as you decide on surgery.

Also keep your BMI low, mine is near 30 and I hear that lower BMI helps.

Walk a lot is what many here recommend. My wife and I walk the dogs 2 miles a day, it benefits all of us.

Also if you do go RALP, be patient. Someone gave me advice on another thread to look at improvement month to month not day to day. I have some really bad days and get discouraged but when I look at where I am now vs 3 months post surgery I am much improved.
Posted 10/22/2017 12:20 PM (GMT 0)
Denis, the general recommendations are to (a) get your pelvic and core muscles in shape by doing kegals (not too many, you can overdo it), walking, and getting your weight and diet in good shape. (most of which you're already doing, and (b) make sure you go with a highly experienced surgeon. Even so, as you know, it's not a guarantee. Many of us have done really well, others not so much--and there doesn't seem to be a way to predict which group you'll be in.
Posted 10/22/2017 12:27 PM (GMT 0)
Denis I think the most important factor concerning incontinence is the skill of the surgeon or the oncologist depending on which treatment you go with. Then post treatment I believe exercise plays a huge role!

Larry
Posted 10/22/2017 12:40 PM (GMT 0)
Denis,
If I were doing it again I'd spend more time doing kegels, strengthening my core, and learning about my normal bladder volume and control.
I'd see how much I can hold and try to hold it a bit longer.
I would also practice activating different muscle groups in the area: butt, anus, penis, etc.
I'd also exercise the prostate as much as possible. You have my permission to say you heard it was Good For Men's Prostate Health, GFMPH. smilewinkgrin
Good luck.
Jeff

Post Edited (Worried Guy) : 10/22/2017 6:50:03 AM (GMT-6)

Posted 10/22/2017 2:02 PM (GMT 0)
Denis, good advice above.
I walked about 4 miles a day for 2 months before the surgery (surgeons reco), and did planks to strengthen my core, as well as crunches. Lost some weight too, to get my BMI into normal range.
I believe all if this helped in my recovery.

Re continence, sorry, I realize that's what you asked about,- I agree start kegels asap. I was doing, if I recall correctly, 3 sets of 10, 5 x a day. I got continent fairly quickly once the catheter was out.
Get a food scale, and weigh your pads every day, keep a log of how much you leak each day. That will help track progress week to week. Your progress won't be linear, as was mentioned above, it will be two steps forward one step back. So tracking weekly, will keep you from getting discouraged, and will help you manage your expectations.
Posted 10/22/2017 5:13 PM (GMT 0)
Denis—
Carbonated beverages are a bladder irritant. I was told to lay off them by my surgeon and my PT. Here’s a fairly standard checklist of irritants, from Johns Hopkins women’s health, but a bladder’s a bladder:
http://www.hopkinsmedicine.org/johns_hopkins_bayview/_docs/medical_services/gynecology_obstetrics/bladder_irritants.pdf
For me, coffee and alcohol are the worst irritants. If you don’t drink and you’ve cut back on caffeine, bladder irritation is unlikely to be a big issue for you.
I agree with the other advice you’ve gotten: look for progress week to week, don’t be shaken by a bad day or two from time to time.
Sounds like you’ve got a great attitude. You’ll do fine.
Posted 10/22/2017 5:31 PM (GMT 0)
Denis -
I guess you know that removal of the prostate result on average with a near doubling of urinary peak flow rates and decreased residual bladder volumes by half. You don't go up a pee during the night anymore (if you do it today). This was a positive SE from surgery for me.
I did the Kegels a lot when preparing for the operation and I was continent from day one. Never used a pad!
Posted 10/22/2017 6:56 PM (GMT 0)
Like Gemlin, I was continent from day one. I also did a ton of kegels before the operation. I did them while I was walking, watching TV, reading ..... i don’t think that while I was awake there was more than a three hour period that I did not do kegels. Based on what I am reading here, this probably was wrong, but seemingly it did not hurt me.

I also did everything else wrong ..... doc had only done 35 Davincis, I drank a ton of coffee, tea and carbonated diet soda, etc., etc. ...... I think I was lucky!

Good luck as you move forward and best wishes.

Ps . What Gemlin says about improved urination is true .... nine years out and I still no longer get up during the night ..... I went from a very weak stream (took minutes to pee) to being able to move the deodorant puck in the urinal. A great side effect!

Post Edited (RCS) : 10/22/2017 1:15:26 PM (GMT-6)

Posted 10/22/2017 7:23 PM (GMT 0)
Gardner thanks. I will do exercises and I play golf every day. BMI is good. Wishing you a speedy recovery. Denis
Posted 10/22/2017 7:26 PM (GMT 0)
Thanks all, I am committed to doing all I can do to prepare for surgery. I really appreciate everyone willing to share their experience. Denis
Posted 10/22/2017 7:28 PM (GMT 0)
Planks. I did many and had a very strong core at surgery. I've been very fortunate not to suffer from incontinence...being nearly 100% dry six weeks out.
Posted 10/22/2017 10:17 PM (GMT 0)
Denis,

There is a long list of things that a physical therapist can give you that irritate the bladder, and will contribute to making continence recovery more difficult.

Some (on the lists) that were key for me (to stop):
- chemical sweetners and anything added to a "natural" sweetner that ends in "-itol". Even some stevias are jacked with chemicals to make them taste a bit sweeter.
- Orange juice (I was already off grapefruit juice because of my BP meds, otherwise that would go as well)
- ANYTHING carbonated. Beer, sodas, sparkling ines, sparkling waters.

Any of those will set off a bad week for me.

I did 10 kegels, 3 times a day, and walked as much as I could.
Posted 10/22/2017 11:16 PM (GMT 0)
One of the things that is involved for me today, 2 1/2 yrs after RALP, is that if I allow myself to get dehydrated even slightly, my bladder capacity seems to go down. Plus, while I seem to have plenty of capacity most of the time, I do note that the time lag between "soon" and "NOW" is a lot shorter than it used to be, which makes long road trips or plane flights interesting. (McDonalds, Pilot, and Love's have clean bathrooms)
Posted 10/23/2017 9:10 AM (GMT 0)
Thanks again everyone. I don't use artificial sweeteners, actually don't use any sweeteners, except my occasional dessert. I am interested in training myself to lengthen the time between bathroom trips. I was remembering when I was on submarines and stood the midnight watch as the officer of the Deck, there would be no bathroom break for almost 6 hours and coffee was the drink of choice. Yikes! Denis
Posted 10/23/2017 9:50 AM (GMT 0)
Hi Denis
GG was fully continent from the minute his catheter was pulled. We found him one of the best surgeons available and are very glad we did, for that reason. While there do seem to be various other factors involved, skill of the surgeon is obviously the biggest. He never even knew about kegels beforehand, and perhaps he's just one of the 'lucky' ones, but you are very well informed and have done plenty of considering, so I'm sure you will be absolutely fine!
Very best to you, and looking forward to hearing of your future success!
Posted 10/23/2017 5:41 PM (GMT 0)
Best way I know of is to use one of the radiation based therapies.

Very few have urinary incontinence after HDRBT/LDRBT/SBRT/IMRT/IGRT. But about one third have continence issues following surgery. Knowing that radiation therapy gives you the same or better cancer control with generally less significant side effects than surgery begs the question "why surgery"?

Going into radiation therapy, I had absolutely no concern about incontinence or ED. My concern was getting ready for the ADT that I needed. That you are literally planning for incontinence is foreign to me.

Now, if surgery was the only treatment available or if it was so clearly superior in every way to the other treatments, then I could see why one would choose it and start preparing to lessen the effect of significant side effects. But for you this just isn't the case. If you are so concerned about a side effects that you are doing high level planning and life style changes to try to mitigate it tells me to find the treatment that does not present the significant side effect in the first place..
Posted 10/23/2017 5:57 PM (GMT 0)
Subdennis,

Lack of control will be uncomfortable at first. Have lots of pads and do not hesitate to use them.

The kegel exercises help, but don't strain too hard while healing. Getting control back takes time.

Here's what I discovered that the doctor never told me antnothing about. Stand in the shower and try to control the dripping via muscle control. Look to see if how long you can keep from leaking. At first, it may only be a few seconds. Don't worry. Hold your lower muscles way down inside to try to keep form leaking. Then let go, relax and let yourself drip in the shower, then try as often as you want. The water will wash everything away and you can instantly tell which muscles are doing the trick regarding control. You get instant feedback.

The other thing I did which seemed to help control immensely was walking. At first, the walking caused me to loose complete control and I was a wet mess when I returned home, but by walking every day, I seemed to gain control quickly. I actually think the walking stimulates the muscles healing to learn how to control the urinary track quicker than sitting around the house. Don't over do it. Walk as long as you are comfortable. You will be healing for a long time.

These two things worked for me and did more than anything else I did, plus it was actually nice to see some slow progress.

IT took me about five weeks to regain continence where I am wearing one or two pads a day.

Hope this info helps.
Posted 10/23/2017 6:06 PM (GMT 0)
ditto JNF
Posted 10/23/2017 10:23 PM (GMT 0)
Thanks good suggestions. Denis
Posted 10/26/2017 12:57 AM (GMT 0)
Denis,

I really struggled with incontinence after surgery. I did Kegels with limited success and was never really sure I was doing them right. I finally asked about physical therapy to hone in on good Kegel technique. It was very helpful, but apparently urologists rarely recommend it. You'll probably have to ask.

The therapist told me that it's more effective if you don't wait too long, so don't wait too long. She also said that not enough men know about it. If I had it to do over again I'd get into physical therapy soon after recovering from surgery.

Jonathan
Posted 10/26/2017 6:42 AM (GMT 0)
Checkout this video, it explains alot:

https://www.youtube.com/watch?v=S7d1z_jJ5wo

Post Edited (shudderingThud) : 10/26/2017 12:46:40 AM (GMT-6)

Posted 10/26/2017 8:41 AM (GMT 0)
Thanks, jonathan, my wife is a PT so she will encourage me to get treatment. Denis
Posted 10/26/2017 8:56 AM (GMT 0)
ST that is a great youtube and should be viewed by all! Thanks Denis
Posted 10/27/2017 5:53 AM (GMT 0)
Denis I was G7 (3+4) and spoke to three urologists before deciding on robotic surgery.
I would have initially preferred brachytherapy (radiation seeds), but with an enlarged prostate, it may not have been the best choice and I probably would need a TURP (rebore) in the future. RALP removed that problem and I happy with my choice, although it is life changing in some ways.
The takeaways from this website are usually to talk to both urologists and oncologists (questions to be asked are listed at the bottom of the first thread, page 1). Do find the best in your locality and consider both options carefully. Here's wishing for a good outcome.
✚ New Topic ✚ Reply
12