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Gotta’ Go…again.
Posted by njmason32 on August 3, 2009 at 1:33 amI would like to know how long it has taken for continence to return to you. I have read of some within weeks and others longer. I am 4 months out of neobladder surgery and still am “leaky” at best, I have an average of 2 hours between trips to the toilet and 4 hours is out of the question. I keep practicing the “keegels” but frankly it’s getting old, I want some sleep that doesn’t result in a diaper change. I’m hoping that some of your comments will help me to sit still and let time do its healing. Just call me frustrated.
Mark M.mmc replied 15 years, 5 months ago 6 Members · 7 Replies -
7 Replies
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Mark,
I only get that sensation when I first go to bed. After that, I am out like a light. Never had such great sleep in 10 years as I had prostate issues that used to cause me to be up every hour to hour and half to urinate.
I guess if you get that sensation, it’s a good thing for acheiving night time continence. However, if you wake up when it happens, that’s fine. If you don’t at least you aren’t wet when you do wake up. If you do wake up in the night, you can always unplug the bag and just go the toilet with the condom catheter on. Then just hook the hose up again when you get back in bed.
Also, I used to hate using those under-sheet pads because they trap the heat and I’d get all sweaty and uncomfortable from that as well. Needed them though because even with the pads and depends it would often leak out.
My nightly output can range from next to nothing up to 1000ml with an average of around 600ml.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Thanks to all for their version of this “O so much fun condition.” Seriously, it is good to hear that I am still about normal though. Mike, the condom catheter sounds good but doesn’t the “flow” sensation in the middle of the night give you a panic, or is it just something to get used too?
Mark M.
Mark,
My neobladder surgery was early October last year. Like you, I got impatient. I have been day time continent for months now and I don’t even worry about night time.
I stopped using the pads and diaper things because I just did not like it at all.
I switched to condom catheters. They have non-latex styles that have an adhesive in them that hook up to a catheter bag. I get the extra 18″ of hose extension to add to the bag. That way you can just leave the bag on the floor next to the bed and there is room to roll around at night without a problem with hoses. I use it every night and I sleep ALL NIGHT, every night and don’t get any wetness whatsoever.
The downside is that I am so happy with it that I’m not concerned about trying to set alarms and acheive continence at night. For me, that’s something I can live with. I do fall asleep on planes and have not had a problem but I sometimes where a pad if it’s a very long flight just in case being asleep leads to some leakage.
The day time should get better very soon for you. If not, follow up with your uro to see if there is a problem preventing you from acheiving daytime continence.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.I just had to jump in on this thread and offer what I could. I am now 1 full year out of neo surgery and I am ok all day. But I still have leakage at night. I was having real trouble with this as I was soooo embarrassed about it. It took my wife to settle this down and make me stop fretting the noght wets.
Some nights are fine, maybe for two weeks, and some are not. I have done keegles and even set the alarm. Still I have wet nights at irregular intervals. I am pushing through because my wife has assured me that this is a small price to pay. I guess with that line of thinking, I am ok.
With that line of thinking, you will be OK too. If incontinence is the only price to pay for being here, its a deal. I should know a deal, I’m a car dealer.
Good luck, keep positive and work on it. :cheer: :cheer:
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]GuestAugust 4, 2009 at 2:06 amMark,
I couldn’t put it any better than Irishguy. Its a slow process. At 4 months I was still sleeping on a recliner lined with absorbant pads, but it did get better, although it is a very slow process. You’ll find that daytime continence comes first and it is another journey to get through the night. I am at a stage at night where the great majority of nights, I will get up to go twice a night and the pads I am wearing stay dry. But just often enough to keep me off balance I’ll have a bad night and some really wet pads.
I am at the 16 month mark now from my neo. And while daytime is pretty flawless with me able to go 4-5 hours between bathroom trips it seems like I am at the longer end of the scale at night.
As long is it keeps getting better, all I can do is bear with it.
Leeh
I am so sorry for the difficulties you are having and will pray for you, as the Lord brings you to mind.
Reading these posts of incontinence is scary for me right now! Have had my 1st TURB, 1st six BCGs and am awaiting my 1st post-op Cysto.
All of my pre-surgery symptoms returned 3-weeks ago & remain, with the exception of “visible” blood. Was supposed to have my Cysto on the 11th, but its been re-scheduled to the 24th. You folks know BC is like a weed, it wants to keep coming back. I tried to get another Dr in the same office to do my Cysto earlier than the 24th , but no luck so far.
The saga continues :woohoo:
Bill Jr
Tumor removed 5/4/09
“T1 high-grade”
Started “BCG” 5/21/09
Have a 2-yr treatment scheduleMark,
For me, one of the most difficult stages of my neo was when my surgeon first took out the catheter, four weeks after my operation. I could feel the warm sensation of urine trickling out of what seemed to be a numb void between my legs that I had absolutely no control over. This frightened me no end and at the time, I couldn’t see beyond having to wear diapers for the rest of my life. That first night after the cath was taken out was the scariest, wettest most sleepless night I’ve ever had to endure. The following night I was fitted with a condom-type device connected to a tube that lead to a bag to collect the constant flow of urine. This helped me to get a good night’s sleep at least, but also began the healing process for me. I went home with device fitted and used it for about two weeks until I felt some life come back into the area between my legs. After that, I used pads which at first I needed to change on average about two to three times a night, which became two then one. After that, I was going to the toilet on average every two hours day and night for about five months. This stage didn’t seem to be progressing much at all for me, which also frightened me. But by about the six month post op mark, I was sleeping every three hours during the night. This also didn’t progress much for me for about another six or seven months until I reached that golden four hour point. Now, after two years post-op, I can go nearly six hours during the night without a run to the toilet, (although I know I shouldn’t leave it longer than four hours mainly because of UTI’s)
Hang in there Mark, it’s a slow process, you and your body have been through hell and back. So give yourself
credit for getting this far, and in time I’m sure things will gradually improve for you.
Winning the battle :-)Sign In to reply.
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