Restarting my journey to incontinence and hopefully true bedwetting

[MISSY1959]

mine on the package say 5ml which does work fine. you dont want to fill it up till it pops or expands the bladder. the idea is to keep it in the bigger it is the more it irriatates the bladder or could. when i put 5ml in when you take it out in say 6 weeks its down to 3ml. so as the cath does age it does loose some fluid.  you start feeling it about 4-6 weeks a little more like a tug as if it wants to come out sort of thing. thats when i change it or remove clean.  remember it does not come out perfectly deflated so dont pull the water out so much it makes it flat. just let the syrnge pull water till you see it flatten then some back in. it will come out round that way not flat.  i think the 10ml is what it can go up to safely.

[kincaid]

8 hours ago, MISSY1959 said:

mine on the package say 5ml which does work fine. you dont want to fill it up till it pops or expands the bladder. the idea is to keep it in the bigger it is the more it irriatates the bladder or could. when i put 5ml in when you take it out in say 6 weeks its down to 3ml. so as the cath does age it does loose some fluid.  you start feeling it about 4-6 weeks a little more like a tug as if it wants to come out sort of thing. thats when i change it or remove clean.  remember it does not come out perfectly deflated so dont pull the water out so much it makes it flat. just let the syrnge pull water till you see it flatten then some back in. it will come out round that way not flat.  i think the 10ml is what it can go up to safely.

I'm guessing 10ml should do since i have a bladder neck of 8mm opening from surgery. 5ml balloon would not stay in i fear.

Thanks for the detailed assistance, i sincerely hope i can give them a second chance and finally get closer to my goal!

[Clr224]

12 hours ago, MISSY1959 said:

i am not sure siliconised is right. i use the ones called silastic by bard.  7 bucks from healthy kin. web link above.  here are a couple pics of how i normaly wear it now in the day time. i use to lay it in my panties but found sitting on it at times could make it leak not often but found this to be better. i take the strap off at night and it lays in my panties. here i have an under panty on so you cant see anything.

 

 

That’s an unusual way to use a catheter and bag system. Your method requires that the bladder actively contracts and pushes the urine out to overcome the back pressure caused by the weight of the urine in the bag.  Normally, the bag is always kept lower than the bladder so that the bladder empties with little or no effort.   However, this system seems to work for you. 

[kincaid]

Also how do you keep the external sphincter relaxed? I consiously need to pay attention or it contracts, despite the Botox and nerve cuts there...so even before when i used catheters and now after all that happened i still cannot keep it relaxed constantly. Even alpha blockers don't help much, but just a bit.

[MISSY1959]

cir your bladder is nothing but a bag. your body produces and expells on its own urine. thats why you get the urge to go it fills the bag. now it could be i wore it so long my bladder shrunk as well. i use to wear it in my panties laying between my legs pulled up a bit so the valve fell in my butt so i did not sit on it per say.  you swivel on that it opens been there.  but at any rate i find it does not matter. i used a clear tube and ran it behind me as well you could see it and bubbles pass through. i dont recomend that as it puts strain on the bag and then leaks. your body will expell it with no issues no effort.  i know as i walk now i dont feel any need tighness urge anything.  i guess thats what a todler would be just going all the time as he walks.

kin stop trying. just let it be. put it in and forget and as your body adjusts you will just see it filling and you dont even know it.  the silastic are also better in that it cant easily be pinched by your body.  then it just becomes normal. like i said i have been wearing it for 18 months.  i know at about a year when i updated this i had little to no control.  this last time i had it out with a diaper it was constant going even as i walked as i could not tollerate any amount it had shrunk so much.

for me its forever now i rather like it even.  you really dont feel a thing and then off and on the bag fills up or your near a restroom and empty it.  those big sodas at the movie no problem.  thats another reason to wear it up. it holds it from falling down which would pull hard. at night i normaly take off the band and lay it loose. i wake up its normaly full.  so no way i can go to bed and not wet it with out this. 

[Clr224]

I’d have to disagree with you in characterizing the bladder as just a bag.  If it was, it could only empty through the force of gravity. The bladder is more of an elastic muscle that contracts to expel urine with the internal pressure triggers the contractions.  

[MISSY1959]

whatever the bladder is a storage device that holds about 600ml. the muscles arround it as does the production of urine push it out.  if you have no space it will pass on through. like a full cup its a smaller cup so it will overflow. your body creates the flow not the bladder.  the smaller the bladder the more the cup overflows. thats why men with prostate issues often use a collection method. the prostate increases shrinking the bladder so it cant hold more.  the body does not stop producing it so it will push it out.

 

[Clr224]

An enlarged prostate actually constricts the outlet (the urethra) requiring the bladder to either work harder to expel the urine or, as is more commonly the case, not completely empty.  The incomplete emptying of the bladder causes it to reach the trigger point more quickly, thus resulting in frequent urination.  Also, long term residual urine in the bladder can result in UTIs.

[kincaid]

On 8/30/2019 at 1:08 AM, MISSY1959 said:

whatever the bladder is a storage device that holds about 600ml. the muscles arround it as does the production of urine push it out.  if you have no space it will pass on through. like a full cup its a smaller cup so it will overflow. your body creates the flow not the bladder.  the smaller the bladder the more the cup overflows. thats why men with prostate issues often use a collection method. the prostate increases shrinking the bladder so it cant hold more.  the body does not stop producing it so it will push it out.

 

I do have one concern....After the second TURP, and 24h after the CH30 cath was removed, I had literally no feeling in the bladder or sphincter.

I could barely empty it and the next day I was bursting, had to run off to ER to have them drain it, they could not give a conclusive answer except atonic bladder.
I just hope that after such a long period of using catheters, if the bladder is unresponsive, at least some other muscle will be weak enough to open and let go.

[MISSY1959]

i dont know i know that my bladder is so small now that any amount in it is discomfort and i have to go. either dieaper or cath.  i do know there are muscles involved mostly that control the closure not the expulsion. ie a person who paralised they dont have muscle control yet thier body still expells it.   your organs produce it and it keeps comming as long as you intake fluid. so its going to come out.  i like wearing it as thier is no feeling no tightness no urgency just it flows freely, could i retrain the bladder sure the longer it is out the more you can either hold it or choose to let it go.   i dont plan to not ever where one again.  that being said it can come out and i do have some measure of control when it is out.

[kincaid]

3 hours ago, MISSY1959 said:

i dont know i know that my bladder is so small now that any amount in it is discomfort and i have to go. either dieaper or cath.  i do know there are muscles involved mostly that control the closure not the expulsion. ie a person who paralised they dont have muscle control yet thier body still expells it.   your organs produce it and it keeps comming as long as you intake fluid. so its going to come out.  i like wearing it as thier is no feeling no tightness no urgency just it flows freely, could i retrain the bladder sure the longer it is out the more you can either hold it or choose to let it go.   i dont plan to not ever where one again.  that being said it can come out and i do have some measure of control when it is out.

Hm, ok. I aim for reduced or no control, right now every 30m i need yo go urgently, if i don't the sphincter cramps up and tightens so bad its difficult to reopen it.

By wearing caths for about 10 months i hoope to weaken or calm down said muscle.

The doctors rather have me suffer another 15 years because they find me too young for a more permanent resection of the sphincter. 8 years ago they just cut 2 nerves but that's restored by now.

I just have to pay attention to remove it for the urologist appointment as he doesn't want me to do this, he's the non invasive kind...

[MISSY1959]

im into it well over a year and i can tell you just when the bag gets full i start feeling the need.  the body want it to pass through with the cath in not hold it. so for me its a totaly let go feeling. its like walking arround peeing all the time.  if i put a diaper on i have to go every few feet or roll over in bed or what not.  its just like there is nothing there no need no urgency no nothing its just nothing.  i think my default is not set at let go. but as i said the silastic ones are the ones you want. silicone is to soft it can crimp off pop or break.  silastic you cant pinch it off short of a clamp

[kincaid]

On 9/2/2019 at 12:22 AM, MISSY1959 said:

im into it well over a year and i can tell you just when the bag gets full i start feeling the need.  the body want it to pass through with the cath in not hold it. so for me its a totaly let go feeling. its like walking arround peeing all the time.  if i put a diaper on i have to go every few feet or roll over in bed or what not.  its just like there is nothing there no need no urgency no nothing its just nothing.  i think my default is not set at let go. but as i said the silastic ones are the ones you want. silicone is to soft it can crimp off pop or break.  silastic you cant pinch it off short of a clamp

So the doc just said he's going to inject Botox in sphincter again, as well as cuts in bladder neck, after that he agreed to long term catheterization.

So I'm hopeful this gives me the opportunity to reduce control.

However he was not convinced speciality catheters with enhanced coating can or should be used for long periods between replacement. So he prefers silicone ones that are cheaper, but i prefer the idea of the Silastic ones so I'll get those

[Inconito]

On 8/28/2019 at 12:45 AM, qwerty said:

On the topic of bladder shrinkage: I found a clinical study on this topic. Long story short, bladder capacity will shrink down to about 100 ml over a year. This is reversible rather quickly. Past a year, it will shrink dramatically more slowly,  something like 8 ml of capacity per month. If you keep at it past this point, the shrinkage appears to be permanent. 

Could you share more in dept information about this a link to the article?. In particular I'm intersted in the reversible versus irreversible bladder shrinkage which comes from catheter use and free drainage

 

[MISSY1959]

i guess the computer is up now will try again. sorry if this posts more than once it crashed. i think i started this maybe april of 18 by april of 19 i had no capacity.  im not even going to hide it from the drs anymore. if i were to go to the hospital i would need it anyway.  i take it out to clean or replace month or so.  silastic lasts longer less risk of poping the ballon which i did with a silicon foley.  it did pass the pieces out but dont do it.  i use 5ml and when you take it out after a month you seem to get say 3ml of fluid out. so there is some decay with it.  when i take it out i leave it out overnight or day.  i cant go a foot with out peeing. i have no capacity at all.  i dont believe its reversable easily.  even sitting with my legs crossed at the desk pinches the line after a couple minutes it hurts. uncomfortable so i move my legs.  i do wear the bag in the front of my panties which allows my trouser belt to hold it up, but it also keeps it from opening.  i use 32 oz bags so its a lot of mess if it does. when i go to put the cath in anything inside will drain into the bag as it reaches the bladder.  i measured that and its like 2 tablespoons.  i can take it out go to the dr kit every restroom in the place and not drink fluids and pull it off. but im 60 screw it just going to be the way it is.    i can say going to the diaper which the northshore supremes are heavy it makes it a little harder to go as now i want to go all the time like every step.  so the urgency and need is there to make sure you go. 

 

[kincaid]

28 minutes ago, MISSY1959 said:

i guess the computer is up now will try again. sorry if this posts more than once it crashed. i think i started this maybe april of 18 by april of 19 i had no capacity.  im not even going to hide it from the drs anymore. if i were to go to the hospital i would need it anyway.  i take it out to clean or replace month or so.  silastic lasts longer less risk of poping the ballon which i did with a silicon foley.  it did pass the pieces out but dont do it.  i use 5ml and when you take it out after a month you seem to get say 3ml of fluid out. so there is some decay with it.  when i take it out i leave it out overnight or day.  i cant go a foot with out peeing. i have no capacity at all.  i dont believe its reversable easily.  even sitting with my legs crossed at the desk pinches the line after a couple minutes it hurts. uncomfortable so i move my legs.  i do wear the bag in the front of my panties which allows my trouser belt to hold it up, but it also keeps it from opening.  i use 32 oz bags so its a lot of mess if it does. when i go to put the cath in anything inside will drain into the bag as it reaches the bladder.  i measured that and its like 2 tablespoons.  i can take it out go to the dr kit every restroom in the place and not drink fluids and pull it off. but im 60 screw it just going to be the way it is.    i can say going to the diaper which the northshore supremes are heavy it makes it a little harder to go as now i want to go all the time like every step.  so the urgency and need is there to make sure you go. 

 

In my case the urgency is there already, every 5 - 10 minutes when drinking normally I need to go, not doing so creates a heavy pain surge and clenches the sphincter too hard.

That's why after the surgery and everything healed up, they agreed I can start using catheters, with the dr approval

Though I would prefer them to do a sphincterectomy, they told me they don't do that much anymore, unless absolutely necessary but even then. 

I have catheter supplies for 10 months ready so I hope given my current urge and reduced capacity (it's apparently a bit more than 100 ml) I hope this will be enough, because I think by that time I will be screaming from the pain :s

[MISSY1959]

i love wearing it. probably sounds awful but at 60 now it may be as well a good choice.  yeah i get that urgency if i leave it out not a good feeling. i think the bigger diapers pinch it some. but im in it for good now.  maybe someone younger might reverse it but for me it would be painful. they way you reverse it is to cap the cathater and it stores more.  i have found however my urgency is so great say if i have my legs crossed it will leak passed it if need be.  as i said the bag is now my bladder period.

 

[kincaid]

On 9/15/2019 at 10:09 PM, MISSY1959 said:

i love wearing it. probably sounds awful but at 60 now it may be as well a good choice.  yeah i get that urgency if i leave it out not a good feeling. i think the bigger diapers pinch it some. but im in it for good now.  maybe someone younger might reverse it but for me it would be painful. they way you reverse it is to cap the cathater and it stores more.  i have found however my urgency is so great say if i have my legs crossed it will leak passed it if need be.  as i said the bag is now my bladder period.

 

Strange, at that age I would wear diapers 24/7 , I use catheters now as a tool and workaround.

Hospital sent me home with one too, they allowed to keep it in for a week, then i need to have it removed, then they need to see what the botox did, after that, I'll be cath'ed for at least 10 months

[MISSY1959]

Well i do wear them and its either or.  24/7 but its hard to use the pool the hot tub, fall asleep in the wrong place. how many messes to do you want to clean up etc.  i also dont like the feel of the urgency. with no and i mean no capcity you feel it all the time now.  your body will still want to try to hold it but it cant so you go. thats every couple of minutes.  which is great in a diaper standing working etc.  but wet diapers get bigger fuller and cost more money.  so for the most part i use the cath i like the feeling or the lack there of. 

[kincaid]

On 9/18/2019 at 9:37 PM, MISSY1959 said:

Well i do wear them and its either or.  24/7 but its hard to use the pool the hot tub, fall asleep in the wrong place. how many messes to do you want to clean up etc.  i also dont like the feel of the urgency. with no and i mean no capcity you feel it all the time now.  your body will still want to try to hold it but it cant so you go. thats every couple of minutes.  which is great in a diaper standing working etc.  but wet diapers get bigger fuller and cost more money.  so for the most part i use the cath i like the feeling or the lack there of. 

Out of curiousity, did you ever have catheter leakage? 

The one they inserted in the hospital (Rusch care silicone transparant CH12 with a 10cc balloon) leaks every time I have a bowel movement, sit down, walk, bend over etc. Just tiny bits, but enough to really need to wear a pad over it.

It doesn't leak when I sleep. There is no UTI, no abdominal pain, no pulling, no strain, friction, it's not blocked as the bag still gets filled properly ,not pinched, so I "think" the diameter is just too small, hence I ordered the silastic CH 14 in the hopes this fixes the problem somewhat.

[MISSY1959]

i use 5cc in the ball, some may differ and i use silastic. if the bag is full and since i have no capcity i have on occasion felt a little wetness. i think it can push past it. however generaly no. i would say a 16 is right for men but if your getting leak go higher. i think i did try to use a regular silicone 14 just did not work well in any way. so size fit does matter. i also went to a 22 thinking id stretch it that just caused irritations and rubbing as it just put a strain on things.

[kincaid]

7 minutes ago, MISSY1959 said:

i use 5cc in the ball, some may differ and i use silastic. if the bag is full and since i have no capcity i have on occasion felt a little wetness. i think it can push past it. however generaly no. i would say a 16 is right for men but if your getting leak go higher. i think i did try to use a regular silicone 14 just did not work well in any way. so size fit does matter. i also went to a 22 thinking id stretch it that just caused irritations and rubbing as it just put a strain on things.

Ok, yeah I did buy the silastic CH14 so no worries there, I don't intend to use pure silicone either. I was just trying to figure out the cause of the leakage.

I have to use a 10cc balloon as thats what the surgeon also isnerted and I have a wide bladder neck, they surgically made it wider because of scar tissue and other problems.
If the CH14 also leaks then 16 is the highest i should go,  long ago I went to 18, 20, 22 and 24 and I really could not tolerate the pain and strain anymore. This caused trauma.

 

[MISSY1959]

With your issues it might be the cause.  generaly i have only felt a couple drops but i do remember one time of sitting i had urgency bad and it did leak more.  but i use the 16 very confortable good fit in and out and no irritation.  its also important in that you dont want stuff going up the outside of the tube for uti.  the 16 can do  a 10cc as well. i just always used 5cc probably why i have no capcity left.  thats like not much space

[kincaid]

21 hours ago, MISSY1959 said:

With your issues it might be the cause.  generaly i have only felt a couple drops but i do remember one time of sitting i had urgency bad and it did leak more.  but i use the 16 very confortable good fit in and out and no irritation.  its also important in that you dont want stuff going up the outside of the tube for uti.  the 16 can do  a 10cc as well. i just always used 5cc probably why i have no capcity left.  thats like not much space

After removing the catheter CH12 they did micturition tests, which were bad, high frequency, medium residual urine, still difficulties opening the sphincter.

They cancelled the test of friday and inserted a CH16 silicone cath with Tiemann tip (for prostate related insertion problems) for 6 weeks. This thing hurts like hell :s
I'm going to see if there is a bardex silastic CH16 with said Tiemann tip, otherwise I'll just use normal ones

[ppdude]

On 9/1/2019 at 8:42 AM, kincaid said:

I do have one concern....After the second TURP, and 24h after the CH30 cath was removed, I had literally no feeling in the bladder or sphincter.

I could barely empty it and the next day I was bursting, had to run off to ER to have them drain it, they could not give a conclusive answer except atonic bladder.
I just hope that after such a long period of using catheters, if the bladder is unresponsive, at least some other muscle will be weak enough to open and let go.

Been there, done that. Boy can I relate to that. No surgical fix, no catheter (for any length of time), just grit bearing it. Not fun.