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Post by Kenny33 on Jun 24, 2009 6:04:02 GMT -6
Hello everyone! For the past 6 years, I could count the number of times I was incontinent on my hands. However recently I've had episodes of incontinence when I am asleep. It just randomly happens, no sign of why, when, how, etc.... Some nights I'll wake up to urinate when I have to go really badly, other nights I dont wake up and when I do, I'm in a puddle of my own urine. This as I'm sure you know is very humiliating and embarrassing. I do get constipated and have to use enema's, I do take some pain medication but I do not drink alot before going to sleep. Does anyone else have this type of random issue at night? I realize spinal cord injury's bring up urinary issues, but like I said, I never had an issue and when I do its only at night when Im sleeping and so sporadic it's hard to tell when it's going to happen. I just need to spare myself the embarrassment and humiliation. I'm honestly very upset at this point about this. Any help would be greatly appreciated!
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Post by taazgirl on Jun 24, 2009 14:24:31 GMT -6
Hi Kenny,
I hardly post but I read every day. I couldnt believe what I was reading. The same thing is happening to me right now too. I had surgery for tethered spinal cord in 2005 (L4,L5,S1,S2,S3). I have lipoma's inside my spinal cord that could not be removed all they way because of nerves going through them. I had a MRI just recently and I am rethered again and the Lipoma's have grown bigger.
I have had 3 accidents in the past 3 months. I woke up in the morning to find the sheets wet. I was so embarrassed. I had to wake up my husband and tell him to move to the couch because I had to get the sheets off the bed.
I had tests done a couple of months ago on my bladder. I was told I have a 80 year old bladder!..great...am 48! The doctor told me there is a surgery to fix the problem but until I find out if they are going to untether me again she wants to wait.
I dont have any answers for you but I know how you feel.
I will be following this post. I am interested in what everyone has to say and any suggestions they may have.
Take care Kenny, Christie
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Post by Linda51 on Jun 24, 2009 14:55:51 GMT -6
FYI you may want to email Dr. Klein at ato73@aol.com Dr. Klein is an Urologist and also one of us so he understands what your going through.
~Linda
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Post by Kenny33 on Jun 24, 2009 16:14:02 GMT -6
Hi- I realize spinal cord injuries and tumors may cause urine and bowel problems, but I never wet my bed for the first couple years after my surgery. Yes I have had urgent needs to pee alll the time and yes my bladder has NOT been the same as it was before surgery, but NO this never happened until the last couple years. It's like every night I go to sleep, I wonder if tonight's the night. It's scary and embarrassing.
The only thing I can say is that I do get extremely constipated and resort to enema's and laxatives and I feel when I do that, I have to urinate alot more... But I am scared something is wrong again with my spinal cord. I pray to God that's not the case. If I find more info, I will let you know. Thanks for the replies!
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Post by 1214 on Jun 24, 2009 17:30:11 GMT -6
Hi Kenny,
I don't have any answers for you on the bladder problem but I can definitly relate to the constipation. I have done quite a bit of digging as I am hypothyroid and have struggled with that on and off for a long time.
I find that instead of the laxatives and enemas (as they can cause problems with your body being dependent on them) I have used stool softeners. 2 before I go to bed, I also eat a bowl of raisin bran or granola in the evening. When I know I have to go but it there is hard stool that won't budge I use the fleet bulb enema for children.
I have tried to take metamucil which is a natural laxative but I didn't seem to work well for me.
I hope you get some answers on the bladder control, that was one of my biggest worries.
Dawn
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Post by Kenny33 on Jun 25, 2009 8:50:01 GMT -6
Dawn, Thank you for the tip on constipation. I've been battling with that for 6 years now and as I'm sure you already know, it's very very draining after a while. I'm looking for a way to stay regular and I think that will eliminate alot of my urinary issues as well. As we know, being really constipated puts alot of stress on your bladder and perhaps can cause accidents. It's amazing the things we have to deal with and think about on a day to day basis. I miss just waking up in the morning and the only thing I worried about was what I was doing that night for fun! haha. I try so hard to not let this get to me or control my life but it's just always there... Thanks for the tips!
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Post by 1214 on Jun 25, 2009 20:15:04 GMT -6
Your welcome Kenny. If you do see a urologist then please mention to him that you have been using laxatives and enemas, it may just be that your body has become used to them and won't get regular without them. Please let me know what suggestions he had for you and yes I agree, I miss those days too. Hopefully someday we will all get lucky and be able to do that again...
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Post by ScrapHeap on Jun 26, 2009 0:15:38 GMT -6
Hi Kenny,
Sorry to hear about your recent problem. It is bad enough that we have to try and relearn those things we use to do without thinking about them. It is even harder when we end up taking steps backwards. That just adds more to our already overloaded physical and mental plate/state.
I do not have any definitive answers for you. I wish I did. I do have problems holding my urine and often have problems going when I know I need to. Low pressure most of the time. I do not claim to have night/sleep accidents. At least not since pretty early on after surgery. I can only imagine how bummed out I would be if I regressed back to sleeping with an external condom catheter and a large "sleeping bag." I hated that. But if the problem persists, that is an option.
Here is what I have observed from my own personal potty plights:
1) Lyrica and the occasional 1/2 pill of Hydracodone desensitizes my neuropathy - takes away some of the constant irritating urges to go, both from oversensitivity and from the basic need to go. That all sounds well and good for the most part. But the problem is that not feeling the need to go as often and/or as urgent can also make things worse. My bladder usually does not completely empty itself. Therefor, even when I go I am still carrying anywhere from 100 ml to 400+ ml. The only thing that is consistent for more than a week is being inconsistent. My basic point is that you may have the same or similar issue... bladder not being completely empty even if you go before turning in for the night.
2) Constipation SUX! I sometimes go up to 5 days before something breaks loose. I TRY really hard to avoid enemas but have to resort to them sometimes for relief. There is little I can take orally that works at all. My small intenstines barely move anything. If I eat enough, wait long enough, force and gravity moves things along. Things work a little better the lower it goes. But not a lot better. Almost anything I put in my mouth/stomach ends up just sitting around until whenever. No good for me. Then there is the "retention" issue. In short, my "pusher" is broke and so is my "cutter." Docs say my retention is better than expected. Great! Except that it doesn't feel that way to me. Constipation does put pressure on the bladder and causes other possible issues too.
Milk, ice cream, or any heavy liquid dairy product works like Draino for me. There is a lot of gas pains and general feeling of being uncomfortable. But it usually works. Half and half milk or ice cream is my Exlax. Keeping the pipes clean helps me with some of my bladder urges and issues. But it is certainly not a cure by any means.
My only other suggestion if the problem persists is to cath before going to bed at night. I do not (so far) have to resort to that anymore but I do self cath before leaving the house if I plan on being gone for a while. Though I know I should probably do it more frequently (again, bladder is not completely emptying itself). If you have the self-contained cath kits you can try this.... After you go pee at night before bed, wait 20 minutes or so and then cath. Even though you may feel completely relieved, I'd be willing to bet dollars to doughnuts that you are still carrying more than 200 ml.
I was told that the "average" bladder holds approx 600 ml before the urge hits hard to go. Even if we drink nothing, the kidneys continue to produce approx 100 ml per hour on average. If you are empty then you could/should be able to hold out for 6 or so hours before going. However, if you are holding 400 ml you can sleep for 2 to 4 hours before the dam is due to break. Like most of us, holding it while awake can be a challenge. Worse if we are sleeping.
My apologies for the very long-winded post. I try to be thorough and informative while injecting personal experience. I am also not turned off by, nor am I shy about, discussing these issues in public. It is what it is. Please keep us informed on how things go for you. And by all means, keep you chin up.
-Mike
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Post by Kenny33 on Jun 26, 2009 13:58:38 GMT -6
Hey ScrapHeap, Thanks for replying to my post, I appreciate any input. It's crazy the things we need to think about . I will literally go up to 4+ weeks without moving my bowels and I end up getting very sick and sluggish as you can imagine. Honestly, If I went every 5 days, I'd be jumping for joy! Last night before I went to sleep, I felt the urge to urinate quite a bit and low and behold, only a few drops came out when I tried to go. I just don't get it. I get urinary hesitation and then next thing you know I'm incontinent. I can't win!!! I was hooked on pain killers a few years ago and ended up having to get help for that problem, so I'm now on suboxone (8mg) a day for that problem I had. I did take lyrica as well. I did notice some relaxation of everything when I was on that but at the same time, i felt weird most of the day. I ended up taking Lyrica only when I absolutely needed it most. I need to maintain a better diet to avoid constipation as I think that is my main issue right now. I hope one day I can figure this all out and get it under control. It gets draining sometimes trying to maintain everything. I never really liked to complain though because 6 years ago I was completely paralyzed with no bowel or urinary control. I guess once I started getting better I just wanted more and more! Anyways, thanks for the insight and the suggestions.... I am going to try a few things and I'll update everyone as soon as I see what does/doesn't work for me!
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Post by Todd on Aug 29, 2009 10:03:03 GMT -6
have you talked to your doc about this? i don't want to be a messenger of doom, but you might want to get your prostate checked.
my daughter deals with constipation real bad. most over the counter laxatives aren't good for you to use on a regular basis. There are tons of herbs out there that help with this, you should do some research on this. another thing that can be done regularly is water with mineral oil in it. Just a little mineral oil in water as many times as you want to drink it, maybe a couple 3x a day. this loosens things up.
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