Issues with my Incontinence

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tomcat

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  1. Incontinent
Never know what or when what type of issue I am going to have with my bladder (unpredictable) been like this for years and annoying

- Sometimes leaky all day
- Sometimes hard to start voiding
- Sometimes issues emptying completely

Weak pressure stream (as I'm a guy is weak) so easier and cleaner to sit while peeing :(

Been wearing pull ups since 2010 since currently wearing Molicare Mobile as the best pull up type I can find myself in Australia as never done a proper continence Assessment due to unable to speak about it to any one (if I had to speak to old GP about it I would email her my concerns but even that got too difficult years ago. :(.

But find issues with pull ups in general:- padding clumping up, chaffing, non snug fit even while wearing Tena Fix Stretch pants.

So had Cystosocpy plus right retrograde pyelogram done in late 2010 nothing was found sent for urodynamics in early 2011 could not find anything so no urological updates as nothing wrong with bladder was found and no consultation with urologist since then.

I also have numerous other disabilities/issues:-Asperger's syndrome, numerous anxiety disorders, Compressed nerve l4l5 s1, osteoarthritis though out spine, mild Thoracic Scoliosis, feet ligament issues, Bipolar.

Any advice ??? Going to try to talk to my new gp in Feb if my anxiety doesn't play up
 
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Hi Tom,

I have had over 10 years of constantly changing incontinence which leaves me feeling its a bit like Russian Roulette- each day can be different and sometimes I even have a dry night. I have both bladder and bowel problems and do hope yours is only urinary.


After a while (and having been assured there was nothing too serious or life threatening) I began to stop worrying about anything except being in control of the problem so as to be able to lead a normal life without too much difficulty.

I am used to being "leaky all day" ut sometimes have very large bladder voidings so have to be prepared for anything. Pull ups don't work for me and the net/stretch pants are designed to hold pads without fastenings - which are useless and give little real protection if you are reasonably active.

What protection is best for you is a matter of personal choice and "one size" does not fit all. Lots of manufacturers/suppliers offer free or cheap sample packs which are very useful. I aim to have the most cost effective solution that provides adequate protection.

This is probably not very helpful and I only replied because no one else had!

I am not an expert, but with all you have to contend with it might be really good to get protection you can trust in place so that you are free of the possibility of embarassment etc.
 
L4L5S1 is the give away... the impinged nerve root caused by the spinal damage is the cause... i destroyed my L5 disk. L4 is almost as bad S1 is 65% severed but the disk is somehow maintaining enough spae i can still walk, but i have nonexistant bladder control... its always a semi constant drip, and when i do geet urge i get 30 sec to a min and slight pressure feeling.. .pullups are a must for me day and breifs at night ... also an aspie... dont expect any real improvement unless you repair your spinal damage and even then its a long road to get back much of anything

for the record, im 24-7 protected i get anyhere from 15 min to 4 hrs on a pullup, and am slowly losing bowels. i consider bladder control gone.. and if manage a dry night the act of setting up ensures a total flood
 
I understand what you say about 15 minutes to 4 hours on a pull up. I wouldn't presume to give advice, but for me having to change that often would be very irksome. I generally go longer than that in a daytime taped diaper and overnight in a heavier duty one. For me pull ups are almost useless as some of my pee voids are large and instant (well almost). A bigger nappy may not clump so much in uncomfortable places and should mean less changes. Bowel emptyings are the worst of all and always require good management and access to both private changing places and your own supply of diapers,wipes,etc.

If I am going to be away from home for any length of time i often have a "booster pad" inside my main nappy. This is usually one of the pads designed to be held in place by the net pads Tena and others sell. They are cheap and not only absorb pee but make a bowel accident less disastrous as you can "sacrifice" the inner pad and still have usable protection. I do this at night as well if I have loose bowel motions.

I suffered a lot of misplaced shame when first seriously incontinent and felt I had to fight against every involuntary urination. Partly because I kept losing the battle and partly because it was more about pride than practicality, I gave up and accepted I would need protection and decided that my definition of "incontinent" meant leaving marks on the furniture or puddles on the floor. If I used protection that worked I was no more of a social disaster than anyone else and described myself as "differently continent". Maybe I am fooling myself but it works for me with very few leakages. That is not to say that I don't take care and avoid sitting on white cloth sofas if I possible can!
 
alannanicole said:
L4L5S1 is the give away... the impinged nerve root caused by the spinal damage is the cause... i destroyed my L5 disk. L4 is almost as bad S1 is 65% severed but the disk is somehow maintaining enough spae i can still walk, but i have nonexistant bladder control... its always a semi constant drip, and when i do geet urge i get 30 sec to a min and slight pressure feeling.. .pullups are a must for me day and breifs at night ... also an aspie... dont expect any real improvement unless you repair your spinal damage and even then its a long road to get back much of anything

for the record, im 24-7 protected i get anyhere from 15 min to 4 hrs on a pullup, and am slowly losing bowels. i consider bladder control gone.. and if manage a dry night the act of setting up ensures a total flood

You have my sympathies on your incontinence problems. However, 4 hours with one pullup has me concerned. That is definite dehydration, and you should seriously consider drinking more water.
 
tomcat said:
Never know what or when what type of issue I am going to have with my bladder (unpredictable) been like this for years and annoying

- Sometimes leaky all day
- Sometimes hard to start voiding
- Sometimes issues emptying completely

Weak pressure stream (as I'm a guy is weak) so easier and cleaner to sit while peeing :(

Been wearing pull ups since 2010 since currently wearing Molicare Mobile as the best pull up type I can find myself in Australia as never done a proper continence Assessment due to unable to speak about it to any one (if I had to speak to old GP about it I would email her my concerns but even that got too difficult years ago. :(.

But find issues with pull ups in general:- padding clumping up, chaffing, non snug fit even while wearing Tena Fix Stretch pants.

So had Cystosocpy plus right retrograde pyelogram done in late 2010 nothing was found sent for urodynamics in early 2011 could not find anything so no urological updates as nothing wrong with bladder was found and no consultation with urologist since then.

I also have numerous other disabilities/issues:-Asperger's syndrome, numerous anxiety disorders, Compressed nerve l4l5 s1, osteoarthritis though out spine, mild Thoracic Scoliosis, feet ligament issues, Bipolar.

Any advice ??? Going to try to talk to my new gp in Feb if my anxiety doesn't play up

A few notes here...

(1) Are you taking any medications? If so, check the paperwork for side effects. I take dicyclomine for IBS, and as a side effect (mentioned in the paperwork), it causes urinary retention and incomplete voiding.

(2) You need to just work up the courage and do it. You're seeing a new doctor? OK, be kind of blunt up-front, and if you get a negative reaction... even so much as a sideways glance... it's time to move on to a new doctor. IC is surprisingly common, especially with things like compressed nerves.

(3) Interestingly, there seems to be a relatively high proportion of aspies on this site. Go figure.
 
Not on any regular meds.
 
Slomo said:
You have my sympathies on your incontinence problems. However, 4 hours with one pullup has me concerned. That is definite dehydration, and you should seriously consider drinking more water.

My control varies. If its a constant drip i can get about 3-4hrs if i have no muscle hold it could be the same volume of urine in under 10 min... some days i have what some resemble as control... meaning i actually might make a toilet... so thus the varied time.... budgets are such that i am short in my ability to get the M4 i should be wearing all the time. Well that and modesty...lol. still wanna be semi cute.... lol
 
alannanicole said:
My control varies. If its a constant drip i can get about 3-4hrs if i have no muscle hold it could be the same volume of urine in under 10 min... some days i have what some resemble as control... meaning i actually might make a toilet... so thus the varied time.... budgets are such that i am short in my ability to get the M4 i should be wearing all the time. Well that and modesty...lol. still wanna be semi cute.... lol

But that's just it. If you have a constant drip then no pullup should last more than two hours (three at most). Since they last you twice as long this means you're really dehydrated.
 
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