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Not sure what is normal

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Posted 6/22/2013 8:05 PM (GMT 0)
Hey, Worried Guy, are you serious about the clove hitch working?
Posted 6/22/2013 9:21 PM (GMT 0)
MHMyers,
Hey, you had a few of us worried; but now that you've modified the subject I feel I can respond. NO, don't use a clove hitch!! Amputation you don't need. Glad you had a nice time with your wife--keep doing it; try Mosel auselese wine the next time. Forget what the Dr said--many are socially inept.
You will be fine!!
Bill
turn
Posted 6/22/2013 9:37 PM (GMT 0)
MHM,

He was kidding about the clove hitch but there is a clamp that some guys have used that doesn't usually lead to gangrene and amputation. If you Google for "Cunningham Clamp" you will find them. You can buy them from Amazon but don't do so until you TALK TO YOUR DOCTOR because I am almost 100 percent sure he doesn't want you to use them at this point.

I suspect you have figured out, but many other commenters here have not, that when your doctor said you were sub-normal he was coming as close as his malpractice lawyers would let him to apologizing about your leaking. It translates as "Sorry you leak so much; I usually get better results."
Posted 6/22/2013 9:56 PM (GMT 0)
Peter, Yes, I am starting to realize what the doctor was saying. Initially, it was hard to not think he was saying that I was sub normal, but everybody here seems to think that I am very normal. There are a lucky few who recover quickly, but it's very typical to leak a whole lot, especially in the first week(s). I am actually getting to the bathroom with a stream left if I kegel clench from sitting or lying down, and sometimes get there before the waterfall starts, so I think I am seeing the beginning of progress. The doctor said there is some sort of implantable donut with a pump in the scrotum for those who never get control, but he said he was only telling me that in case I started to lose hope; he was sure I would not need that. Initially, doing the kegels hurt like a knife, and now that it doesn't hurt, it seems to be helping.
Posted 6/22/2013 10:39 PM (GMT 0)
I was a bit worried when I originally read this thread and its title, but after revisiting it a couple of days later, I feel much better in terms of the direction it's going (other than some non value-added comments). Like I said, I'm not a surgery guy so I can't relate directly. I'm sure this will be an uphill battle, but I think it's one that you'll eventually win sooner or later.

Slightly off track, after I had my brachytherapy I read about guys that breezed through it, yet I came home with a catheter (not typical for brachy) and had lots of peeing problems the first week. Also, I had real problems sitting, while others couldn't figure out why that was the case.

It shortly seemed like a distant dream. In fact, two months ago my oncologist pointed out that my recovery has been faster than many others. So I started slow and finished strong!
Posted 6/22/2013 11:14 PM (GMT 0)
MHM,
Glad the dinner went well. Try to stay away from spicy food, coffee, citrus juices, etc.
I remember my first dinner out, about 2 weeks after surgery. I could feel the Depends filling up while I ate my meal.. That is what they call the "new normal". Any way, "Fake it "til you make it".

Bill from Florida cool
Posted 6/23/2013 3:44 AM (GMT 0)
Hey MHM,

Tying yourself in a knot only works if you've got the length. ;-)
Mere mortals need a Cunnigham clamp.

Jeff
Posted 6/23/2013 3:48 AM (GMT 0)
MichaelT , I thank you for your value added comments, late but earnest, ey? Oh, google, "the Man in the Arena" sometime, it may add some more value for/to you…………... Teenagers, what are you gonna do??? tee hee
Posted 6/23/2013 3:56 AM (GMT 0)
MHM,

What your doctor was describing is an AUS (Artificial Urinary Sphincter). We have several guys here who have one. They usually work pretty well but they occasionally cause trouble and need tinkering. There is a more common operation called a "sling" that doesn't need the pump in your scrotum. It supports your urethra where it exits the bladder in a more natural position. Some of the guys who have posted here have slings. I may wind up with one sooner or later but it sounds like you won't if you are seeing the improvement you just described a couple of weeks out.

Keep doing those kegels and keep us posted.
Posted 6/23/2013 10:02 PM (GMT 0)
I thought about sending this to my friends, but I was pretty sure they would think I've lost my mind. But I thought you guys would understand: today was the first day I made it to the bathroom to pee without peeing in my diapers the whole way to the bathroom. I was able to hold it until I got to the bathroom. It wasn't because I felt like I had to go, however, I have just learned that when I stand up after watching TV for an hour, that I will need to go. So I clenched, made it to the bathroom dry, and actually went on purpose for the first time. I felt like it was a big deal, and this all seems a lot more possible...
Posted 6/23/2013 11:05 PM (GMT 0)
It was a big deal, and it should be a sign of progress and encouragement to you. Think of baby steps, it will get better for you.

david
Posted 6/24/2013 1:07 AM (GMT 0)
I tried to go to bathroom every hour during he daytime even though I didn't feel like I needed to go. Sometimes I actually did go. Also, you might try sitting down to pee. I noticed my aim since surgery is not as good as it used to be and I released more urine sitting down.
Just my thoughts.

Bill from Florida cool
Posted 6/24/2013 2:20 AM (GMT 0)
MHM,
Congratulations! When I was at your stage of progress, I think it was only a few more weeks until I ditched the pads completely. Good progress and good luck!
SC
Posted 6/24/2013 3:25 AM (GMT 0)
Hi logoslidat,

Sorry to be so dense, but not sure what you're referring to. I'm totally lost.

BTW, you gave me one of my most helpful comments last year when I was totally confused about which way to go on my treatment decision...it was not to be like the donkey that starves itself to death between two bales of hay. It made a light go on.

Michael
Posted 6/24/2013 3:35 AM (GMT 0)
I've been having a rough spot, I get em now and then, apologies. I have a an over active mind. You know what they say, just because you're paranoid, doesn't mean they ain't out to get you. Im glad I could help you MichaelT You just helped me! Logo
Posted 6/24/2013 3:55 AM (GMT 0)
Logo,

Sorry to hear you are having a rough patch. The "man in the arena" reference was a part of a Theodore Roosevelt speech, wasn't it? What brought it to mind?
Posted 6/24/2013 4:32 AM (GMT 0)
It was PeterD. Never matter, no mind or is it no matter , never mind tee hee. Thanks for the concern, comfort is always nigh, always………. Logo
Posted 7/11/2013 10:42 PM (GMT 0)
It's now been 5 weeks since the surgery and the incontinence is improving. I actually dribble a lot, but get to the bathroom with most of it. Not dry at night yet.

Worst thing is that from about noon on, I feel so nauseous that I can't do anything. I lie down, and that helps. Eating or not doesn't make a difference. The surgeon doesn't respond; his nurse or PA just says "it takes a while to feel normal again".

Anybody have similar experience?
Posted 7/13/2013 12:10 PM (GMT 0)
Everybody's different.

I'm 5 weeks out and I still use a pad. So far, I only use one pad per day, and that's only to catch the little spurts that happen occasionally.

I had pretty good control as soon as cath was out, but not much bladder capacity. That seems to be improving as well. I kegel when I cough, get up out of a chair, and when I feel that little leak starting. I can stop the leak before it gets very far.

They tell me to measure progress in weeks, not days, and that's been pretty accurate. I am satisfied with my progress so far. I studied the side effects and weighed my choices. I was, and still am, willing to accept it as it is and work on it.

Any progress is still progress. wink

Myers, I have come to realize that I will probably still feel tired and still feel those twinges and assorted effects for a while. I might have had a robotic procedure, but the same work was done internally and it takes time to heal.
Posted 7/22/2013 9:40 AM (GMT 0)
OK, continence is improving in week 6, and I have noticed that I have lost 2 inches in flaccid length. It is nearly inside my body. I thought that was just a post surgical anomaly, but what I have read here seems to say that it is only logical: if you remove a 2 inch long prostate, then take the urethra from below the prostate and re-attach it to the bladder, you have to get those 2 inches from somewhere. It pulls the external end (the penis) 2 inches closer to the body). Is that right?
Next, some guys are saying that they have been told by their doctor to take half a viagra, (or cialis, or levitra) to increase the blood supply to help grow it back out. Is that right?
Third, some guys were told to use the suction devices to have sex again, and to practice with it before, but not now. At six weeks, I might rip something off. They are saying 6 months and then start pumping.
I'm making it through the night with a seemingly dry diaper, so things are improving, but my doctor told me nothing about viagra, and nothing about pumping. He doesn't want to see me again until September 13 (surgery on June 5).

Any thoughts on any of this?
Posted 7/22/2013 11:07 AM (GMT 0)
Taking the meds to increase blood flow is to help keep it alive... not to help it grow back.
Posted 10/28/2013 5:37 AM (GMT 0)
It's now been almost 5 months since the surgery...Last night I wore pajamas to be instead of diapers because I know there will be no leakage. I still wear the full diapers during the day, but only because I can't hold an over-full bladder yet, and it starts leaking out after 5 hours (as a teacher, it is almost 5 hours from school starting to my lunch, when I can go to the bathroom). Most of the time, I can stay dry when coughing or sneezing, unless it is several coughs or sneezes in a row. Lifting or exercising still cause some leakage. All in all, I feel blessed. My PSA is less than .01 and my stamina is almost back to normal; I thought 3 or 4 months was excessive, but the doctor assured me that it may not be typical, but it is reasonable at 58.

A very happy ending, that I don't think is finished, to a very scary time.
Posted 10/28/2013 6:12 PM (GMT 0)
You might want to give "male guards" a try - pretty much requires wearing briefs, but (IMHO) a lot more comfortable than "diapers" and mostly as effective - also easier to dispose of (smaller) and cheaper. Diapers don't exactly do much for the Boxer side of the Boxer/Brief divide anyway. You pretty much have to visit both sides, no matter where you started - boxers are the only thing that work with the catheter. I still leak a bit at 24 months, but it's two pads a week level leaking - I could almost go without, and I've declined additional surgical intervention at this time as expense, complexity and risk that I can just about be certain will fail in 12 years or so due to materials issues and need to be done over, .vs. a minor irritation and adjustment of continuing to use pads.

As for recovering from the gut-stab-wounds (however neatly and nicely they were made) I'd say 3-4 months is actually pretty much low end, and I was 11 years younger than you.
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