HealingWell
Search Close Search
☰

For the incontinent crowd:

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/17/2014 3:32 PM (GMT -5)
For those who are finally dry or merely making progress: have or did you ever have significant setbacks for no apparent reason?

I had been making great progress since getting back from a trip to Europe back in mid June. I had even managed to go hiking on steep trails and had little struggle staying dry. Just a few weeks previous to that doing that would have been asking for frequent squirts- very wet- despite stopping to pee seemingly every 10 mins. So to hike dry and with little urgency seemed like a major break through at a little over 4 months.

Then the last week or so I have just seemed to be having more trouble with control when up and moving. Finally today, I left the house after peeing, and was back at the house barely over an hour later. I had huge urgency on the drive back home- I am rarely bothered that much when sitting. As I was rushing to get out of the car and into my house, I just could not hold it, and absolutely wet my pants while trying to get unzipped. Had to change clothes. What made that crazy is it is the 1st time it has happened from the day the cath came out 4 1/2 months ago! So another first!

Ironically, I just had my next to last electro-stimulation/bio-feedback treatment yesterday and was told how great I was doing. Next day, I wet my pants. Life can be funny, eh?

This is a minor thing compared to many things here. In fact, there are things going on in my own family- stage 4 Mesothelioma in a 39 year old mom- that dwarf anything related to my PC. Worst case I will get a surgical fix in 6 - 12 more months. Plus a plane has just been shot down and it is hitting the fan in Israel/Gaza, etc. So it is not a huge deal, even if quite disappointing. I had become down right positive about the whole incontinence thing for a while, feeling I was obviously well on my way. But, I wanted to ask if any of you guys had any similar experiences along your path to recovery? I was wondering if there is anything normal about this, or if it is a sign something has gone way off track.

I suppose a UTI is possible, though seems unlikely. I may go ahead and try a few home remedies for that while trying to figure it out.

If any one has had a similar experience, let me know!
Posted 7/17/2014 6:51 PM (GMT -5)
BillyBob,

The straw that broke the camel's back for me was a 8 pad day out of no where this past March. I was at 3-4 pads a day at that time so I was not really getting better like you. That was when I went to my doctor to discuss an AUS. I am not suggesting an AUS for you, I was 18 months out and still leaking.

You are still in your first 6 months so I wouldn't give up yet. Always be prepared for a relapse, keep extra pads with you in the car, wear dark pants, and have a Depends within reach in case you do have an "accident" and have to change your underwear.

Hang in there, I hope you make it in the next 6 months.

Bill from Florida cool
Posted 7/17/2014 7:11 PM (GMT -5)
Hi BillyBob, you have my sympathies. Very disappointing when you get a setback, and I hope it is just a one off temporary aberration. Time will tell.

As usual BigMac provides wise counsel.

I have had a similar experience but under different ciircumstances.

My RP was in August 2013. I was virtually dry by the end of the year. No pads under normal daily activities, but did use one if undergoing strenuous activity, like my twice weekly rounds of golf.

I started RT in mid January 2014 and finished at end of February. Still fully continent. Then suddenly in early May I started to leak again and got progressively worse. Now leaking around 200mls every day, but some days better than others. Varies between 150 and 300.

As it happens, 2 days before the leakage started, I did some very heavy lifting, so not sure if I strained the sphincter, but doubt that as I would have thought it would have recovered by now. I'm fairly sure my problem is a RT SE. You haven't had RT, so not your issue.

Chin up, I'm sure this is a temporary setback.

Chas
Posted 7/17/2014 10:42 PM (GMT -5)
Thanks guys for the words of wisdom and encouragement. You are right, no RT yet. I can't think of any out of the ordinary physical activity. Plus, though I may not feel at my absolute recent peak, I have had no recurrences of that incredible urgency that I suffered about 130PM today. And we drove an hour and had supper tonight with our daughter, I even had one beer with our Mexican food. I peed before driving over, visited- standing around- for a while and then went to eat and had the beer. Went just in case while at the restaurant, then sat in the car while the women got pet supplies then drove for an hour to get home. I had to pee by the time we got home, but no sign of urgency even after that beer!

I can't figure out-probably will never know- what set me off this afternoon. Again, that was my worst incident by far since the catheter came out over 4 months ago. I have not had an incident where I could not quite get from the car to the bathroom in time- even if I felt I needed to hurry- ever before, even after driving 2+ hours or sitting at home 2+ hours(like right now) or sleeping as much as 6 hours straight without getting up, and no urgency when I did. But today I had my lunch and the usual glass of tea, used the bathroom, drove to the Chiropractor and had my treatment, decided not to bother peeing before I left there because I would be sitting and would be home in less than 20 minutes, then it was all I could do to hold it while driving home! Huge and steadily building urgency.

Oh well, hoping to get back to so called normal any day now! If not, that's what they invented the AUS for!
Bill
Posted 7/18/2014 6:21 AM (GMT -5)
BillyBob,
Just wanted to tell you I had Mexican food also last night. I had my 2 year to the day follow up appointment with my surgeon's office in Orlando. I am a transplanted Texan now living in Florida. You can take the boy out of Texas but you can't Texas out of the boy. My favorite Tex-Mex restaurant from Texas has a franchise in Orlando. Whenever I go to Orlando, (3 hours from home), I have to stop by. I had them pack up 2 meals for my wife and I and brought it home for dinner.

One of the hardest things to do after surgery was to give up spicey food while recovering. I even asked my nurse before checking out of the hospital 2 years ago if I could eat Tex-Mex. She said only if I wanted to pay another visit to the hospital in a day or 2.

Be careful with the salsa while you are still leaking. I gave it a year. After that, I went back to the hot stuff. I figured if I was leaking a year out, I was going to enjoy myself. yeah

Bill from Florida cool
Posted 7/21/2014 3:00 PM (GMT -5)
I am right at 1 year post op and am finally down to 1 shield pad a day for just over a month now. I got down to using 1 guard, but I hated how bulky they were(american bulge issues haha!). I have days where I stay dry all day and days where I seem to leak, but mostly leak in the evenings when I am tired. Still have the dreaded, "what if" playing through my head, that I may leak while wearing khakis at work so I continue to wear the pads to work. I try not to wear anything on weekends. Sometimes it's ok and sometimes I have to change clothes. If I do go anywhere, I use a pad.
I hope that helps you. I have always stayed dry at night, not sure why, just have.
Posted 7/21/2014 3:35 PM (GMT -5)
BillyBob,

Just a shot in the dark, but are your blood sugar levels ok? That was how my PCa was discovered; was having frequency and urgency issues and my family doc tested PSA as well as blood sugar and other blood work. Metformin and diet changes controlled my type II diabetes and the frequency and urgency problem went away until the PCa cures were attempted.
Posted 7/21/2014 7:13 PM (GMT -5)
Biker56,
Yep, blood sugar is fine, or at least it always has been, or good enough I guess between 90-100 fasting, but thx for trying to come up with something. I have not had any more bad incidents with major urgency since that one 20 minute drive home on the 17th. And this morning I drove 90+ minutes to take my son and daughter-in-law to catch a plane to Mayo in MN for a 2nd opinion on her stage 4 Mesothelioma. ( that's right, I don't even have any problems with my body!) Helped get her luggage unloaded from the car, then drove about 10-15 mins to the nearest Pilot truck stop for a precautionary Pee, then 90 minutes back home. All with no issues at all. I have no idea what hit me the other day, but it got my attention! LOL! So no more bad problems, but I still don't think I am doing as well as a couple of weeks ago. Though I was expecting/hoping to do even better.

I did use my clamp for a couple of hours late today, while working out side, just because sometimes I just get tired of either holding it or having to go way too often. And it did keep me dry. I don't even use a pad through the night( have not for a couple of months) or for the 1st couple of hours around the house after I 1st get up. Thank you Lord for that blessing.
Posted 7/25/2014 2:52 PM (GMT 0)
I'm approaching 6 years post-op, and I still experience incontinence.  I can go for a while with few problems, than I'm back on a pad for some months.  I've resigned myself to the fact that I'll have the problem for the rest of my life.  Not a bad trade-off, as I view it.  I'm alive and well!
✚ New Topic ✚ Reply