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Support for dealing with incontinence
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PostPosted: Mon Mar 07, 2016 10:45 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
So for those few who know me around here, I've had FOUR urinary sphincterotimes in the past year-and-a-half. This is due to an ongoing urge incontinence combined with a neurogenic blockage. Long story short, I get painful urges when I need to go every 30 minutes of so, but thanks to some bad spinal wiring and muscles that don't work any more- I can't go even when I really need to. Well, thanks to all of this, I still have to strain really- really- hard just to pee a little bit. All while the pain from my urges keeps getting worse as I can't go.

Fast forward to my latest.... and I have recently developed not one, but two physical bulges inside my urethra that are partially or near-fully blocking off my urethra (which is in addition to the last two I had which were surgically removed before). This new blockage is quite literally making it impossible for me to go when I get one of those urges. The pain as of late has been INTENSE to say the least. So today I went to my urologist (actually he wasn't available today so it was just a nurse I saw). I had intended to get and indwelling (semi-permanent) catheter since I wasn't able to myself get a catheter past the second blockage this morning. She proceeded to do a urine sample and bladder scan (for determining how much urine was left in my bladder).

Well, it turns out she was only "authorized" to cath me with a temporary intermittent catheter. Except I never have anything left in my bladder after I strain really hard to pee. It's always just been a matter of straining really hard. Except doing so isn't really good for the rest of my kidneys, anus, and body in general; hence the need to indwelling (folley type with balloon) catheters. As such, an intermittent (straight) catheter is of no help and no use to me. Now I have to wait two more days until I see a different doctor before he can write me a prescription for something they will put in right there at the clinic.

For those of you who are in "despair" because you can't hold your own urine. Guess what, not being able to pee when you need to is SO much worse. Consider yourself lucky all you need is diapers!!!!

ps, I have a urethral sensitivity from a past need of catheterizing. Catheters literally hurt now, yet even they hurt less than feeling like I've been punched hard in the bladder every time I get an urge yet can't pee. NOT FUN!

pss, I have a 15 year anniversary trip to Japan in mid-april coming up. There is NO way I can get another surgery before then- especially since I've already sunk $20K into first class plane tickets and a guided tour of Japan- for two. One way or another this has to wait until I get back from my trip. Darn it!


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PostPosted: Tue Mar 08, 2016 6:35 am 
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Joined: Sat Jul 14, 2012 4:14 pm
Posts: 100
Well, I must say, the title sure got my attention, and I almost came in to post a nasty comment about wanting you banned for such a title.
However, after reading the post, I can fully understand, and even myself is wishing you were incontinent, because that sounds so very painful!

You are in my thoughts and prayers, Brian.

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Hello, my name is Scott, and physically, I am 40 years old. However, thanks to abuse, and being special needs, mentally and emotionally, I am equal to about 6-10 years old.


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PostPosted: Tue Mar 08, 2016 11:08 am 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
Scott, thanks for your concern, and yeah it hurts but all I can do for now is just grin and bear it. Yeah I figured it would also get everyone's attention, which was kind of the point.

I'm just hoping some people will be able to come here, read this, and realize there are worse things living with than incontinence. That having it isn't so bad after all and that you can even manage an active and stress free life with it too.


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PostPosted: Tue Mar 08, 2016 11:14 am 
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Joined: Mon Feb 14, 2011 9:57 am
Posts: 189
Location: UK
Pre having a catheter I had no bulges/strictures but did have an intermittent problem where my detrusor muscle would spasm and try really hard to squeeze urine out, but simultaneously my bladder neck would clamp shut thus creating massive pressure. It is agony! My whole body would spasm so badly that if I was lying down it would sit me up a fair bit.... Impressive when I usually wasn't strong enough to do that independently. I would usually be think JUST COME OUT JUST PEE PLEASE!!!! and I would end up feeling really relieved if I had an accident...and then feel so guilty that I had WANTED to have an accident. So yeah...I have some experienxe with something similar and you really do have my sympathy.


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PostPosted: Tue Mar 08, 2016 3:59 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Although I have only had one sphincterotomy, compared to your four, I do understand that incontinence is much preferable to the threat that neurogenic bladder and urethral anomalies can pose to your kidneys and other pelvic structures. Do whatever you need to do to endure that trip to Japan; when you return, get competent urological care to resolve this. Good luck. Believe me, I do know the pain you're enduring, and it is horrible.


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PostPosted: Tue Mar 08, 2016 5:46 pm 
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Joined: Sun Apr 06, 2014 2:50 pm
Posts: 687
Location: Oklahoma
I remember having to do urinalysis on ship or at a large command and the line to pee in a cup was long. When it was my turn sometimes it seemed like the valve to relieve myself became slammed shut. It didn't help by the time it was my turn pee my bladder was in pain from holding it so long. Now add to it the military instruction of having someone watch the urine leave the body as you go to the bathroom just made that valve clamp down even more. I could not imagine having to live with this feeling all the time as you do. Try to enjoy your trip and look forward to your comments on it.


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PostPosted: Wed Mar 09, 2016 6:27 am 
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Baby Brian wrote:
Yeah I figured it would also get everyone's attention, which was kind of the point.


Buddy, you are starting to seem more and more like I am on forums.... LOL :)

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Hello, my name is Scott, and physically, I am 40 years old. However, thanks to abuse, and being special needs, mentally and emotionally, I am equal to about 6-10 years old.


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PostPosted: Wed Mar 09, 2016 12:57 pm 
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Joined: Wed Aug 19, 2015 11:49 am
Posts: 890
Location: Jacksonville Fl
Thanks all, and yeah that is what it is feeling like. In fact I took an oxycodone last night just to help me relax. It's a shame muscle relaxers don't help me or I'd be taking a lot of them right now.

I have a cyctoscopy later today to verify the blockages, and will also be pushing to get an indwelling catheter put in after that. Catheters hurt me now too, but not as much as this constant urge/straining I'm living with.

I will probably only leave it in for a week before having to take it out. I'll probably have another one in the week before my trip too. In the past this on/off catheter use proved to be a good enough means to get me through the pain until I could get it more permanently resolved.


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PostPosted: Thu Oct 05, 2017 10:27 am 
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Joined: Sat Sep 02, 2017 11:44 am
Posts: 51
Hey, I do realize that I'm bumping this topic, but how are you Brian now? I remember, that I wished for not being incontinent as well and it really hurt me when I did realize that I can't do anything about it and I just have to live with it. Especially as on top of many things, I'm also fecal incontinent. I had depresison, I was seeing my therapist and truth be told I was coping with so much sh** in my life that I can't even think about it now, but I do understand what you are/were going through. So if you are still with us here I would appreciate some feedback from you how are you doing now and if you did manage to sort out your life. What has tremendously helped me to cope with my life was finding some goal in my life that is worth pursuing - bodybuilding, being a man of an higher status, traveling etc There is plenty of things that can help you develop and forget about things troubling you, but you just have to find them.


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PostPosted: Thu Oct 05, 2017 11:40 am 
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Joined: Sat Dec 29, 2012 2:44 pm
Posts: 447
Location: Seattle area
IIRC, Brian is not around here any longer.

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