Saw a continence advisor

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saix

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  1. Incontinent
Hey everyone as the title says I recently saw a continence advisor
she was working under the Australian group "caremmunity" and was pretty awesome. the short version is that she said I was pretty much doing everything right in regards to the incontinence and gave me advice on continuing to manage it.
she also arranged for funding assistment with continence aids
she also organized for me to get some samples which arrived 2 days later
so currently I have some more Lille pullups in other sizes
a small Lille tape on diaper (my supplier only had mediums)
a ton of Lille booster pads
2 molicare pullups
2 molicare tape ons
and next week im recieving some samples of abena products (both pullups and tape ons i believe the tape ons are S4)
the molicare tape ons seem rather good but i have yet to use any of the products
I will however say that Im probably going to end up using either just molicare tape ons or lille with boosters the price is a factor so ill need to do some math
im rather fond of caremmunity as they have offered a lot of range and support with products so im very fond of that
apologies for the awfully written post it is late
please give any input on anything ive said or on any brands mentioned
ive also never used a booster pad so can anyone give any advice in regards to using them the basics really ie positioning and whatnot
thank you very much and feel free to ask any questions
 
I take it the continence adviser said that it's actually best for you to use diapers to manage your incontinence? It's alright if that is the case actually. I just don't like assuming anything that might be contradictory to what a professional says that's all. If the adviser really did say diapers are best then I can honestly say that yes Molicare is actually best for you I suspect given your size considering you fit into their smalls right? I usually go with plastic backed diapers over cloth backed because there's less chance of a leak (or mess) due to the plastic being more resistant to wear and tear actually. You see I'm 6'6" tall and I tend to walk long distances so a diaper I wear better be tough just because of the stress it has to go through while I'm walking or playing something full contact like football if it's going to do it's job. Cloth backed diapers always tear a lot easier then their plastic backed counterparts without exception from all the different diapers I have tried. I suspect that your activity level will not get any higher then say jogging right? If that's the case then Molicare is perfect for you because they are relatively cheap, they don't rip apart easily while jogging(provided you your activity level is that high in the first place), they have good absorbency, and good odor control. You're actually lucky as far as money goes because of your size because the only reason why I don't get Molicare myself is because there are better diapers in my size that fit my lifestyle better generally speaking that are even more cost effective for me.

I can imagine you're not to keen on the notion of plastic backed diapers because of the noise they make right? Well first off I would just suggest taking a plastic grocery bag and stuffing it in your pocket and when someone asks you about it (which may never happen I might add) just tell them you use a plastic grocery bag like a makeshift garbage bag (which could very well be the truth anyways) and that "explains" the reason why they heard a crinkle. Wearing diapers can be embarrassing for some but here's something that should be considered. If you're worried about people calling you a "immature baby" or something like that then let me ask you this question. How is it "immature" to not make a mess all over other peoples things by using diapers? Maturity is the ability to control one's emotions in any given situation not some backwards minded societal construct that diapers are for babies or older people. The reason why I chose to wear diapers is because I choose to not disrespect others with my condition in the healthiest way possible for myself and everyone else around me in that order.

When it comes to booster pads I would suggest trying to use a diaper without one first. Why? Booster pads are better for situations involving extended wearing of a diaper over longer periods of time such as a long car ride with no restrooms for long periods of time for example. Of course if you just want to not have to go get changed more often to save time then boosters are helpful as well for those situations as well. If you're going to wear a diaper for longer periods of time for any logical reason you can think of essentially boosters are best reserved for those reasons. I highly recommend that if that is going to be the case you use skin care products to avoid rash if your going to do that fyi. I use cornstarch baby powder as well as Petroleum Jelly to keep my skin rash free. Be advised the petroleum jelly is highly effective only if you use it right. You want to apply that to your diaper area immediately after taking a shower or bath because you just effectively sterilized yourself and the jelly will seal in your skin properly rather well. The reason why you want to do this right after a shower or bath is because if you just use it at every change you will seal in unpleasant bacteria on your skin and possibly aggravate any skin conditions you may have otherwise(unless you cleaned yourself in a shower because there's going to be no bacteria at that point). Essentially don't use it unless you literally just stepped out of a shower and got dried off and it will have amazing results.

Please let me know if you have any questions and I will respond accordingly. :smile:
 
accepted said:
I take it the continence adviser said that it's actually best for you to use diapers to manage your incontinence? It's alright if that is the case actually. I just don't like assuming anything that might be contradictory to what a professional says that's all. If the adviser really did say diapers are best then I can honestly say that yes Molicare is actually best for you I suspect given your size considering you fit into their smalls right? I usually go with plastic backed diapers over cloth backed because there's less chance of a leak (or mess) due to the plastic being more resistant to wear and tear actually. You see I'm 6'6" tall and I tend to walk long distances so a diaper I wear better be tough just because of the stress it has to go through while I'm walking or playing something full contact like football if it's going to do it's job. Cloth backed diapers always tear a lot easier then their plastic backed counterparts without exception from all the different diapers I have tried. I suspect that your activity level will not get any higher then say jogging right? If that's the case then Molicare is perfect for you because they are relatively cheap, they don't rip apart easily while jogging(provided you your activity level is that high in the first place), they have good absorbency, and good odor control. You're actually lucky as far as money goes because of your size because the only reason why I don't get Molicare myself is because there are better diapers in my size that fit my lifestyle better generally speaking that are even more cost effective for me.

I can imagine you're not to keen on the notion of plastic backed diapers because of the noise they make right? Well first off I would just suggest taking a plastic grocery bag and stuffing it in your pocket and when someone asks you about it (which may never happen I might add) just tell them you use a plastic grocery bag like a makeshift garbage bag (which could very well be the truth anyways) and that "explains" the reason why they heard a crinkle. Wearing diapers can be embarrassing for some but here's something that should be considered. If you're worried about people calling you a "immature baby" or something like that then let me ask you this question. How is it "immature" to not make a mess all over other peoples things by using diapers? Maturity is the ability to control one's emotions in any given situation not some backwards minded societal construct that diapers are for babies or older people. The reason why I chose to wear diapers is because I choose to not disrespect others with my condition in the healthiest way possible for myself and everyone else around me in that order.

When it comes to booster pads I would suggest trying to use a diaper without one first. Why? Booster pads are better for situations involving extended wearing of a diaper over longer periods of time such as a long car ride with no restrooms for long periods of time for example. Of course if you just want to not have to go get changed more often to save time then boosters are helpful as well for those situations as well. If you're going to wear a diaper for longer periods of time for any logical reason you can think of essentially boosters are best reserved for those reasons. I highly recommend that if that is going to be the case you use skin care products to avoid rash if your going to do that fyi. I use cornstarch baby powder as well as Petroleum Jelly to keep my skin rash free. Be advised the petroleum jelly is highly effective only if you use it right. You want to apply that to your diaper area immediately after taking a shower or bath because you just effectively sterilized yourself and the jelly will seal in your skin properly rather well. The reason why you want to do this right after a shower or bath is because if you just use it at every change you will seal in unpleasant bacteria on your skin and possibly aggravate any skin conditions you may have otherwise(unless you cleaned yourself in a shower because there's going to be no bacteria at that point). Essentially don't use it unless you literally just stepped out of a shower and got dried off and it will have amazing results.

Please let me know if you have any questions and I will respond accordingly. :smile:

she did indeed agree with my use of diapers for managing it. I have urge incontinence which can be hard to deal with and she understood we discussed products and made sure that I was doing everything right eg making sure I wasnt drinking 12 cups of coffee a day
we also discussed general bladder health stuff like the frequency that I was going to the bathroom liquid intake pelvic floor muscle exercises that kind of thing for the time being its obvious that nothings changing so while im doing what I can the diapers are still a necessity and she understands that 100 percent and she also understood that the products I use are important.there is no use in trying to use a pullup or pad when its just going to leak through so im fine to use tape on diapers I made that obvious and she was absolutely fine having dealt with many people in the same situation

I have a 80cm waist meaning that I am able to fit into the small of some brands however thats at the limit of most brands small for instance the molicare super plus small has a limit of 80cm
I did actually wear a molicare super plus for the first time today as of me writing this it hasnt been used yet however it was actually a little small for my liking it does fit but I think I might get a better fit with a medium so tomorrow I will call and see if I can get a sample of the mediums as well
I was using Lille in size medium due to my previous supplier only carrying them however caremmunity arranged for a small Lille one as well for me to try it is worth noting that the sizing for Lilles small ends at 100 cm and the sizing for medium starts at 80 so I may just be used to using larger diapers
truth be told Ive leaked through 2 of the Lille diapers so the plastic backed molicares seem a lot more appealing

the noise of the molicares isnt actually an issue at least not with the small ones I went out briefly in one and the only time I was able to hear noise from the diaper was just after id put it on and was wearing nothing else and even then it was rather slight. If I were to go out for a long amount of time id probably bring my backpack with me so that alone would probably cover up the noise

I do sometimes have issues with what I expect peoples opinions to be like on the topic of diapers but the thing is they arent that noticable from what I can tell. even then I wouldnt care if they were I said to the continence advisor Id rather have people say "gee that guy has big hips" rather than "gee that guy has pee running down his legs" Im not exactly wearing tights either.
mentally the incontinence itself takes a toll anyway wetting my pants makes me feel like Im 2 years old and wearing diapers makes me feel like im 80 sometimes but its the only way I can get out.
I turned 20 back in march and Ive spent a lot of the past 2 years being agoraphobic with the incontinence being a big cause and with anxiety also being a big problem they feed into each other a little I do sometimes make small outings but recently I had a large outing so the diapers are a lot better than the alternative. after having one accident in public and it being the worst night of my life I have to do everything to avoid it happening again

When I use a diaper I use a small amount of powder and thats all when I change I just use babywipes to clean off the area then put on a new one with powder again
I havent yet had to spend an amount of time in a wet diaper but in the near future Im planning to go to the cinemas with friends so I may very well be in one for a while
I said it before but I will probably just switch to using molicares though I might just get some boosters to finish off the last of the Lille diapers as I dont feel as secure as Id like to in them

On the 17th Im seeing my urologist again to go over the results of my urodynamics testing and probably talk about the next step depending on what the results are so ill probably make a post in regards to that
I will also say that Im very happy looking at caremmunity as my previous supplier only stocked size medium lille products whereas caremmunity has a number of brands in every size and has been very very helpful
thankyou very much for your post
feel free to ask me any questions or make any comments
I welcome any questions at all and thanks for the support

- - - Updated - - -

quick very very short update but it seems that apparently a very big flood was enough to make a small leak from the molicare while seated as im probably going to swich to mediums its not a huge problem and the price isnt much of a jump either
 
Urologist had to cancel my appointment since he got sick so now I could be waiting a few weeks
now im just feeling depressed as hell there goes the last month of waiting for the appointment
 
Hi saix,
I am sorry for the cancellation, but try not to feel depressed over it. It's only postponed for a few weeks. Try to put the waiting time to good use. Think of what you have already done in just the past few weeks time, you have made some huge strides in getting better IC supplies, and with getting out to meet with friends. Things are only getting better, so please try to not feel depressed.
 
fifigal said:
Hi saix,
I am sorry for the cancellation, but try not to feel depressed over it. It's only postponed for a few weeks. Try to put the waiting time to good use. Think of what you have already done in just the past few weeks time, you have made some huge strides in getting better IC supplies, and with getting out to meet with friends. Things are only getting better, so please try to not feel depressed.

Ive just been counting down the days to it for a month and it was a pretty big thing so Its frustrating for me especially since It was the most invasive test Ive had and probably had the most chance of showing something
just feeling really awful today

later in the week I might be going out with friends again so there is that to look forward to but Im still kind of upset about this
 
Hello- I'm currently working on a project for a class from the National Science Foundation, based on incontinence. After reading your post, would it be possible to follow up with you? These questions would be involving what you currently do to manage any incontinence, and your past experiences in this area.
If you have other questions, please feel free to message me and I'm more than happy to answer them.
Thanks!
Marshall
 
mcollin3 said:
Hello- I'm currently working on a project for a class from the National Science Foundation, based on incontinence. After reading your post, would it be possible to follow up with you? These questions would be involving what you currently do to manage any incontinence, and your past experiences in this area.
If you have other questions, please feel free to message me and I'm more than happy to answer them.
Thanks!
Marshall

I dont see why not however if your going to hang around the site it might be worth making an introduction thread
 
Thanks- I did, but now I'm just waiting for it to be approved.

Unfortunately I'm not able to pm yet since I just joined, but as part of the class we did develop a quick survey in case anybody is interested in quickly providing some anonymous feedback: https://www.surveymonkey.com/r/ZQRYB5Y

If people would prefer to go via email, there is an option to provide that in the survey which should only take about one minute.
 
saix said:
she did indeed agree with my use of diapers for managing it. I have urge incontinence which can be hard to deal with and she understood we discussed products and made sure that I was doing everything right eg making sure I wasnt drinking 12 cups of coffee a day
we also discussed general bladder health stuff like the frequency that I was going to the bathroom liquid intake pelvic floor muscle exercises that kind of thing for the time being its obvious that nothings changing so while im doing what I can the diapers are still a necessity and she understands that 100 percent and she also understood that the products I use are important.there is no use in trying to use a pullup or pad when its just going to leak through so im fine to use tape on diapers I made that obvious and she was absolutely fine having dealt with many people in the same situation


Usually a continence adviser will try to help you by not needing to use diapers unless there was a high probability that alternatives are somehow bad for your health. Medications always will have side effects that might very well not be worth it. For me I have mental health issues that don't need to be aggravated by certain medications for example. Chances are good that it's best to manage things with diapers at this point though I would definitely say that you should listen to your doctor over any advice I give because the doctor knows more about you personally and is better trained then me.


I have a 80cm waist meaning that I am able to fit into the small of some brands however thats at the limit of most brands small for instance the molicare super plus small has a limit of 80cm
I did actually wear a molicare super plus for the first time today as of me writing this it hasnt been used yet however it was actually a little small for my liking it does fit but I think I might get a better fit with a medium so tomorrow I will call and see if I can get a sample of the mediums as well
I was using Lille in size medium due to my previous supplier only carrying them however caremmunity arranged for a small Lille one as well for me to try it is worth noting that the sizing for Lilles small ends at 100 cm and the sizing for medium starts at 80 so I may just be used to using larger diapers
truth be told Ive leaked through 2 of the Lille diapers so the plastic backed molicares seem a lot more appealing


This could be true. I myself can wear a large Northshore Care Supreme but the x-large actually fits me better. It's just the price tag on the bigger sizes goes up because more materials are used so it's worthwhile for you to at least use smalls to save money but it can be better to pay more for a bigger size depending on personal preference.


the noise of the molicares isnt actually an issue at least not with the small ones I went out briefly in one and the only time I was able to hear noise from the diaper was just after id put it on and was wearing nothing else and even then it was rather slight. If I were to go out for a long amount of time id probably bring my backpack with me so that alone would probably cover up the noise


The mediums will not be a issue as far as noise goes either I think. Also another thing about the noise. You still have a use for your underwear because wearing that over a diaper helps to keep the tapes in place along with muffling any noise even more so.(although this can get rather sweaty for doing that so it's not necessarily a good idea depending on how hot it is).


I do sometimes have issues with what I expect peoples opinions to be like on the topic of diapers but the thing is they arent that noticable from what I can tell. even then I wouldnt care if they were I said to the continence advisor Id rather have people say "gee that guy has big hips" rather than "gee that guy has pee running down his legs" Im not exactly wearing tights either.


That's why I use plastic backed exclusively myself. Honestly people who try to call me out for wearing a diaper (this has happened only once fyi) really do not like my response to their hypocritical immaturity on the spot in front of everyone. Someone took it upon themselves to make it well known in my neighborhood to let everyone know I have to wear diapers and I never miss a opportunity to make that bus driver regret that mistake. He does not even get a break when I'm not around because he gets to hear about it through everyone else just how disconcerting I can get when I get harassed like that. It's no one else's business what goes on in my underwear essentially. If someone tries to make it everyone's business I usually respond by saying "Well if you prefer that I make it a point to crap or leak all over your stuff alternatively then by all means I will stop wearing just for you." (yes I look people in the eye and say that when they try to harass me about that. If someone tries to tell me that I'm pushing it onto them I remind who it was that brought the subject up in the first place and tell them to not continue to talk about it to everyone else if they have a problem with it.)


mentally the incontinence itself takes a toll anyway wetting my pants makes me feel like Im 2 years old and wearing diapers makes me feel like im 80 sometimes but its the only way I can get out.
I turned 20 back in march and Ive spent a lot of the past 2 years being agoraphobic with the incontinence being a big cause and with anxiety also being a big problem they feed into each other a little I do sometimes make small outings but recently I had a large outing so the diapers are a lot better than the alternative. after having one accident in public and it being the worst night of my life I have to do everything to avoid it happening again


Well like I said wearing diapers is not a sign of immaturity or age actually. Look at me. I have said in the past that I'm 6'6" tall and weigh 250 pounds right? I do not fit into the societal stereotype of someone who needs diapers for medical reasons when you look at me. Also notice this- does my profile say that I'm over 50? Nope obviously not so either I'm allegedly lying about my age (which can get me banned here technically if that where true which is not true at all) or I really am 38 years old. My physical appearance actually looks like someone in their late 20's actually. You see maturity is the ability to control one's emotions rather then be controlled by one's emotions. Don't be afraid to be yourself. You are a human being Saix and I will not judge you for that like others have. We may have disagreements (hypothetically speaking) but that does not mean you are a bad person. Go ahead and enjoy yourself a little and enjoy a movie with your friends. You look like you could use it. :smile1:


When I use a diaper I use a small amount of powder and thats all when I change I just use babywipes to clean off the area then put on a new one with powder again
I havent yet had to spend an amount of time in a wet diaper but in the near future Im planning to go to the cinemas with friends so I may very well be in one for a while
I said it before but I will probably just switch to using molicares though I might just get some boosters to finish off the last of the Lille diapers as I dont feel as secure as Id like to in them


I would recommend using the smalls for nighttime use only(less movement so you will not tear it up which could save you a lot of money) and use the mediums in the daytime so you can be more comfortable(and not have it in the way as much). You see when you're about to have a accident don't try to move to much and just release as little urine at a time. That's what I do with my urge incontinence. I don't just cut loose completely if I can avoid it and I usually don't have leaks because of it. Most diapers can't take a full on void (even the best one's can't) but smaller bursts and letting the diaper absorb the urine works for me. Essentially just release just enough to make the urge go away or at least go down to manageable level then release in small amounts until the urge goes away for like 3 minutes in a small series of wettings. You're less likely to have a leak if you do that. Of course the boosters will help with how much it can hold so the diaper lasts longer. Also yes the small amount of powder is actually a good idea as it makes it harder for your diaper to absorb urine faster. Essentially don't clog it with powder.



feel free to ask me any questions or make any comments
I welcome any questions at all and thanks for the support


when you use baby powder do you use cornstarch or talcum powder? Talcum powder can cause lung cancer if you inhale it (in certain amounts over time) so if you have ever smelled Talcum baby powder you where inhaling a carcinogen. Cornstarch is just as good if a tiny bit more expensive without the health problems. If anyone does not believe me then ask your doctor because that's where I'm getting this information from actually.


- - - Updated - - -

quick very very short update but it seems that apparently a very big flood was enough to make a small leak from the molicare while seated as im probably going to swich to mediums its not a huge problem and the price isnt much of a jump either


Yeah just release in as small amounts as possible until your comfortable again to avoid that problem like I described above. Plus you are exercising those muscles when you do that actually so it's possible to regain some control.
 
accepted said:
Usually a continence adviser will try to help you by not needing to use diapers unless there was a high probability that alternatives are somehow bad for your health. Medications always will have side effects that might very well not be worth it. For me I have mental health issues that don't need to be aggravated by certain medications for example. Chances are good that it's best to manage things with diapers at this point though I would definitely say that you should listen to your doctor over any advice I give because the doctor knows more about you personally and is better trained then me.





This could be true. I myself can wear a large Northshore Care Supreme but the x-large actually fits me better. It's just the price tag on the bigger sizes goes up because more materials are used so it's worthwhile for you to at least use smalls to save money but it can be better to pay more for a bigger size depending on personal preference.





The mediums will not be a issue as far as noise goes either I think. Also another thing about the noise. You still have a use for your underwear because wearing that over a diaper helps to keep the tapes in place along with muffling any noise even more so.(although this can get rather sweaty for doing that so it's not necessarily a good idea depending on how hot it is).





That's why I use plastic backed exclusively myself. Honestly people who try to call me out for wearing a diaper (this has happened only once fyi) really do not like my response to their hypocritical immaturity on the spot in front of everyone. Someone took it upon themselves to make it well known in my neighborhood to let everyone know I have to wear diapers and I never miss a opportunity to make that bus driver regret that mistake. He does not even get a break when I'm not around because he gets to hear about it through everyone else just how disconcerting I can get when I get harassed like that. It's no one else's business what goes on in my underwear essentially. If someone tries to make it everyone's business I usually respond by saying "Well if you prefer that I make it a point to crap or leak all over your stuff alternatively then by all means I will stop wearing just for you." (yes I look people in the eye and say that when they try to harass me about that. If someone tries to tell me that I'm pushing it onto them I remind who it was that brought the subject up in the first place and tell them to not continue to talk about it to everyone else if they have a problem with it.)





Well like I said wearing diapers is not a sign of immaturity or age actually. Look at me. I have said in the past that I'm 6'6" tall and weigh 250 pounds right? I do not fit into the societal stereotype of someone who needs diapers for medical reasons when you look at me. Also notice this- does my profile say that I'm over 50? Nope obviously not so either I'm allegedly lying about my age (which can get me banned here technically if that where true which is not true at all) or I really am 38 years old. My physical appearance actually looks like someone in their late 20's actually. You see maturity is the ability to control one's emotions rather then be controlled by one's emotions. Don't be afraid to be yourself. You are a human being Saix and I will not judge you for that like others have. We may have disagreements (hypothetically speaking) but that does not mean you are a bad person. Go ahead and enjoy yourself a little and enjoy a movie with your friends. You look like you could use it. :smile1:





I would recommend using the smalls for nighttime use only(less movement so you will not tear it up which could save you a lot of money) and use the mediums in the daytime so you can be more comfortable(and not have it in the way as much). You see when you're about to have a accident don't try to move to much and just release as little urine at a time. That's what I do with my urge incontinence. I don't just cut loose completely if I can avoid it and I usually don't have leaks because of it. Most diapers can't take a full on void (even the best one's can't) but smaller bursts and letting the diaper absorb the urine works for me. Essentially just release just enough to make the urge go away or at least go down to manageable level then release in small amounts until the urge goes away for like 3 minutes in a small series of wettings. You're less likely to have a leak if you do that. Of course the boosters will help with how much it can hold so the diaper lasts longer. Also yes the small amount of powder is actually a good idea as it makes it harder for your diaper to absorb urine faster. Essentially don't clog it with powder.






when you use baby powder do you use cornstarch or talcum powder? Talcum powder can cause lung cancer if you inhale it (in certain amounts over time) so if you have ever smelled Talcum baby powder you where inhaling a carcinogen. Cornstarch is just as good if a tiny bit more expensive without the health problems. If anyone does not believe me then ask your doctor because that's where I'm getting this information from actually.


- - - Updated - - -




Yeah just release in as small amounts as possible until your comfortable again to avoid that problem like I described above. Plus you are exercising those muscles when you do that actually so it's possible to regain some control.

medication didnt work in the past and it also made me sick Im managing bladder irritants along with overall fluid intake and doing pelvic floor exercises regularly while I wait to see my urologist again however the incontinence is still quite bad. on my worst days I can have over 7 accidents so diapers when Im going out is my only choice going out without wearing one would be an impossible feat for me and the advisor understood that. she did ask a lot of questions regarding my situation though to make sure that there wasnt anything obvious that I could improve. A big part of why she came was to help take care of my funding assistance as well. Ive had the incontinence for a while with no real signs despite my efforts so until I see my urologist again the diapers are my only real option I am continuing to work with my doctor and urologist though.

I do still wear boxers over my diapers if I didnt I imagine theyd be more visible and possibly make more noise

I dont really expect people to make comments but the idea of being noticed is still a little worrying I have aspergers and anxiety so public places are already a pretty big deal for me diapers take away the fear of an accident or at least a visible one however its another thing to worry about. I also didnt go out for a long time so I have many problems to worry about even though most probably arent real problems.
I never really understood the idea of making fun of an adult using a diaper , diapers are embarassing but when it comes down to it id say the person making fun of someone for a medical condition is the bad guy instead of the person whos trying to deal with a medical issue and if I were confronted Id probably say something to the effect of that "yeah you made fun of a disability whose more of a **** in this scenario" or at least I think I would in reality Id probably just start shaking and have to get away before I got upset

My issues with the diapers are foolish I can admit that much most of it is probably just things wearing on me a little Ive had the incon for 2 years and while the diapers are much better the incon makes me feel pretty bad about myself Ive had family members blaming me for it happening in the past and its held me back a lot not to mention the accidents being humiliating. the diapers are very preferable they just make me feel insanely unattractive which is probably a weird thing to say on a board that also has a large number of people that are very into them

tomorrow or the day after Im probably going to the cinema with friends so that will be another big milestone last time I just went to the supermarket and then a friends house whereas this would be a crowded public area for the entire time so its a little more daunting

I dont need diapers at night I dont experience bedwetting I do however cut all fluids 3 hours before I go to sleep and empty my bladder as much as I can before sleeping and even then I sometimes wake up having to go
if I consume liquid before bed I wake up a lot to urinate so I just avoid it

when I have an accident I usually cant help it being a large void but it varies sometimes itll be enough to just wet my pants and sometimes itll just be a total flood. I often have little warning for my accidents the urge can hit and be very strong making it really hard to hold it If Im lucky ill have a couple of minutes and be able to make it to a bathroom or at least try although often instead of minutes Ill only be able to hold it for a few seconds before I cant take hold it anymore meaning its hard not to flood

when I use powder its a tiny amount and its always a pure cornstarch powder Im well aware of the carcinogenic properties of talcum based powders so I only use a cornstarch one

thanks for your reply your being really helpful and I appreciate it I look forward to your next post
feel free to ask anymore questions if you wish Im fine to answer just about anything

I actually have a question albeit an odd one. Is incontinence common among people with aspergers? the advisor said she knew of several people who suffer from both aspergers and autism spectrum disorders that have incontinence so that made me a little curious. as I mentioned before I suffer from aspergers however I wasnt able to find any information online

Apolgies for not only the length of this post but for the way it was written Im not actually sure how to quote parts of a post so I just started new paragraphs to reply to each part which is a pretty bad workaround

random thing that I thought I may as well add. when I go out which has really only been once I always bring a bag thats pretty well stocked my bag contains.
A full change of clothing
a towel
wipes
powder
spare diapers
plastic bags
deodorant
if there is anything that you think I should add feel free to say so

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just got a call now my next urologist appointment Is on the 10th
 
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Saix, you should be wearing "plastic pants" over your diaper to catch any leaks. It also will help to reduce any diaper noise. The PUL pants are waterproof but breathable and very quiet. You still may choose to wear boxers over everything. If you have a lot of diaper sag, you may want to wear something to help support the soaked diaper to prevent sag. Try spandex underpants, sports compression shorts, or a "onesie" (bodysuit).

I'm double incontinent and wear diapers 24/7.

--John
 
jdinvirginia said:
Saix, you should be wearing "plastic pants" over your diaper to catch any leaks. It also will help to reduce any diaper noise. The PUL pants are waterproof but breathable and very quiet. You still may choose to wear boxers over everything. If you have a lot of diaper sag, you may want to wear something to help support the soaked diaper to prevent sag. Try spandex underpants, sports compression shorts, or a "onesie" (bodysuit).

I'm double incontinent and wear diapers 24/7.

--John

plastic pants arent really an option for me at the moment
 
saix said:
A big part of why she came was to help take care of my funding assistance as well. Ive had the incontinence for a while with no real signs despite my efforts so until I see my urologist again the diapers are my only real option I am continuing to work with my doctor and urologist though.


Do you have Medicaid? If you do Medicaid can cover for diapers. I would recommend going to a medical supply store (ask them over the phone so you can avoid embarrassment) and specifically inquire about Tranquility Slimline diapers (NOT to be confused with the tranquility ATN they are different types)
I know you can get those diapers with Medicaid and the slimlines are not trash like most of the other kinds that medicaid covers. Even if you can't get coverage for them their price tag is actually rather cheap. You can get a case of 96 slimline's I think for like $70. They are average in quality (as in they don't suck but they get the job done which actually works). I know this because that's what I get and they work well for me. Molicares just appear to happen to be the best premium diapers you can get.


I dont really expect people to make comments but the idea of being noticed is still a little worrying I have aspergers and anxiety so public places are already a pretty big deal for me diapers take away the fear of an accident or at least a visible one however its another thing to worry about. I also didnt go out for a long time so I have many problems to worry about even though most probably arent real problems.
I never really understood the idea of making fun of an adult using a diaper , diapers are embarassing but when it comes down to it id say the person making fun of someone for a medical condition is the bad guy instead of the person whos trying to deal with a medical issue and if I were confronted Id probably say something to the effect of that "yeah you made fun of a disability whose more of a **** in this scenario" or at least I think I would in reality Id probably just start shaking and have to get away before I got upset


The reason why people do this is because they suffer from the delusion that people in my age category somehow don't "need" diapers until I embarrass their ignorance and immaturity on the spot. Don't run from them because all that does is empower them. I just remind them of their place by asking them questions about their medical history and even sarcastically asking them if it's alright for me to talk openly about their "STD's" since they seem to think it's funny with a genuine smile. People will back off when confronted with such confidence especially when they realize that I'm still 6'6" tall. Be sure to mention that if they keep it up you might just decide to make sure you have a accident all over their stuff just to remind them that you are wearing a diaper as much for their convenience as well as yours.


I dont need diapers at night I dont experience bedwetting I do however cut all fluids 3 hours before I go to sleep and empty my bladder as much as I can before sleeping and even then I sometimes wake up having to go
if I consume liquid before bed I wake up a lot to urinate so I just avoid it


Long term you might not want to do this but yes short term you certainly do. you see giving up and just using diapers at night will result in bed wetting becoming permanent but the thing is waking up at night at 2 AM consistently can shorten your maximum life span as well as cause other health issues. Also dehydrating is what caused me to become IC (part of the reason fyi). You might stand a unlikely chance of not needing diapers after a while for some reason so avoiding accidents in this way could be a good idea but only in the short term. I had to make the hard decision of whether or not to just not try to avoid in order to avoid health issues down the line by using diapers permanently or a shortened maximum life span. I chose to live longer and now I never wake up when I wet at night. This will become permanent but based upon what my urologist has told me I will be 24/7 for the rest of my life whether I like it or not anyways. Dehydrating like that could damage your kidneys but that will take a few years so you can do this. Just make sure not to make it a habit if diapers become permanent for you though. The final decision is yours of course and I will respect that either way.


when I have an accident I usually cant help it being a large void but it varies sometimes it'll be enough to just wet my pants and sometimes it'll just be a total flood. I often have little warning for my accidents the urge can hit and be very strong making it really hard to hold it If I'm lucky ill have a couple of minutes and be able to make it to a bathroom or at least try although often instead of minutes Ill only be able to hold it for a few seconds before I cant take hold it anymore meaning its hard not to flood


Yeah that's roughly what happens to me as well technically. You see when the urge hits I don't actually try to make it to a toilet and instead do a series of small releases of urine at a time until I'm comfortable again. I would suggest you do this but only if your doctor suggests that this is a good idea. You see because of this I will need diapers for the rest of my life and what chance I had of had of putting a end to this (if I had a chance at all) just went out the window for me last year anyways. I avoid flooding by just going in smaller amounts without even bothering with a toilet depending on the circumstances. If I have any doubt that I can't make it to a toilet in 3 minutes or less I will not try and just slowly release in small amounts before I explode and leak all over the place. Essentially just learn to release in smaller amounts and in fact try pelvic floor exercises while doing this since it's actually a really good work out for those muscles actually at that particular moment.


thanks for your reply your being really helpful and I appreciate it I look forward to your next post
feel free to ask anymore questions if you wish Im fine to answer just about anything


I'm happy to hear this actually. Just remember I'm not a doctor so if anything I say that happens to contradict with your doctors advice should be overridden by your doctor alright? The doctor will know best most likely and I would not dare to presume to override their sound advice.


I actually have a question albeit an odd one. Is incontinence common among people with Asperger's? the adviser said she knew of several people who suffer from both Asperger and autism spectrum disorders that have incontinence so that made me a little curious. as I mentioned before I suffer from aspergers however I wasnt able to find any information online


Technically in theory yes. Be advised it's not the autism or Asperger's actually. You see the genetic code for autism (or Asperger's. The DSM-5 rolled both go them together now) can also cause sensory issues through other conditions. You see there's a condition called Sensory Processing Disorder (SPD) that I happen to have. What SPD does is we don't process information the same way as typical people do. The part that's relevant here (SPD effects you in other ways that are not relevant to this) is that the feel of a diaper comforts us theoretically which is a result of SPD cravings. The sensory cravings caused by SPD can result in a desire so intense that if you don't get it "fixed" it can cause real physical pain in someone. Asperger's also have sensory issues like this as well. But that would be a discussion that would most likely belong on the Off-topic forum so I will not get into further detail about on this thread.

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saix said:
plastic pants arent really an option for me at the moment

Too expensive right? I have the same problem as well. I also have bowel incontinence (it's rare for me. Usually it's just urinary issues with me). I do suggest that if you get a chance in the future to do so, get plastic pants. I simply can't afford to buy most of this stuff because it costs to much and the bills come first. But onesies and plastic pants are not a bad idea if you want to avoid a mess. They can easily be worth their price tag that I suspect you usually will not be able to afford.
 
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accepted said:
Do you have Medicaid? If you do Medicaid can cover for diapers. I would recommend going to a medical supply store (ask them over the phone so you can avoid embarrassment) and specifically inquire about Tranquility Slimline diapers (NOT to be confused with the tranquility ATN they are different types)
I know you can get those diapers with Medicaid and the slimlines are not trash like most of the other kinds that medicaid covers. Even if you can't get coverage for them their price tag is actually rather cheap. You can get a case of 96 slimline's I think for like $70. They are average in quality (as in they don't suck but they get the job done which actually works). I know this because that's what I get and they work well for me. Molicares just appear to happen to be the best premium diapers you can get.





The reason why people do this is because they suffer from the delusion that people in my age category somehow don't "need" diapers until I embarrass their ignorance and immaturity on the spot. Don't run from them because all that does is empower them. I just remind them of their place by asking them questions about their medical history and even sarcastically asking them if it's alright for me to talk openly about their "STD's" since they seem to think it's funny with a genuine smile. People will back off when confronted with such confidence especially when they realize that I'm still 6'6" tall. Be sure to mention that if they keep it up you might just decide to make sure you have a accident all over their stuff just to remind them that you are wearing a diaper as much for their convenience as well as yours.





Long term you might not want to do this but yes short term you certainly do. you see giving up and just using diapers at night will result in bed wetting becoming permanent but the thing is waking up at night at 2 AM consistently can shorten your maximum life span as well as cause other health issues. Also dehydrating is what caused me to become IC (part of the reason fyi). You might stand a unlikely chance of not needing diapers after a while for some reason so avoiding accidents in this way could be a good idea but only in the short term. I had to make the hard decision of whether or not to just not try to avoid in order to avoid health issues down the line by using diapers permanently or a shortened maximum life span. I chose to live longer and now I never wake up when I wet at night. This will become permanent but based upon what my urologist has told me I will be 24/7 for the rest of my life whether I like it or not anyways. Dehydrating like that could damage your kidneys but that will take a few years so you can do this. Just make sure not to make it a habit if diapers become permanent for you though. The final decision is yours of course and I will respect that either way.





Yeah that's roughly what happens to me as well technically. You see when the urge hits I don't actually try to make it to a toilet and instead do a series of small releases of urine at a time until I'm comfortable again. I would suggest you do this but only if your doctor suggests that this is a good idea. You see because of this I will need diapers for the rest of my life and what chance I had of had of putting a end to this (if I had a chance at all) just went out the window for me last year anyways. I avoid flooding by just going in smaller amounts without even bothering with a toilet depending on the circumstances. If I have any doubt that I can't make it to a toilet in 3 minutes or less I will not try and just slowly release in small amounts before I explode and leak all over the place. Essentially just learn to release in smaller amounts and in fact try pelvic floor exercises while doing this since it's actually a really good work out for those muscles actually at that particular moment.





I'm happy to hear this actually. Just remember I'm not a doctor so if anything I say that happens to contradict with your doctors advice should be overridden by your doctor alright? The doctor will know best most likely and I would not dare to presume to override their sound advice.





Technically in theory yes. Be advised it's not the autism or Asperger's actually. You see the genetic code for autism (or Asperger's. The DSM-5 rolled both go them together now) can also cause sensory issues through other conditions. You see there's a condition called Sensory Processing Disorder (SPD) that I happen to have. What SPD does is we don't process information the same way as typical people do. The part that's relevant here (SPD effects you in other ways that are not relevant to this) is that the feel of a diaper comforts us theoretically which is a result of SPD cravings. The sensory cravings caused by SPD can result in a desire so intense that if you don't get it "fixed" it can cause real physical pain in someone. Asperger's also have sensory issues like this as well. But that would be a discussion that would most likely belong on the Off-topic forum so I will not get into further detail about on this thread.

- - - Updated - - -



Too expensive right? I have the same problem as well. I also have bowel incontinence (it's rare for me. Usually it's just urinary issues with me). I do suggest that if you get a chance in the future to do so, get plastic pants. I simply can't afford to buy most of this stuff because it costs to much and the bills come first. But onesies and plastic pants are not a bad idea if you want to avoid a mess. They can easily be worth their price tag that I suspect you usually will not be able to afford.

medicaid is an american program from what I know. Im an australian so all I can get is a one off payment of a bit over 500 dollars a year for supplies which is currently being processed

Im not the sort of person who can confront others. ive never been good with people and due to a mix of things being anywhere but home is pretty big. I had a blood test today and was shaking at the hospital so lord knows what id do if I were confronted I can say Id retaliate but I have some big doubts

I drink a little over 2 litres of water a day I just cut it off before bed so Im still staying hydrated and truth be told it allows me to get a decent amount of sleep I usually get at least 6 hours before waking If not more so Im not having extreme problems in regards to night time and due to me maintaining a decent fluid intake and sleeping enough I think Ill be fine

If there is no chance of me making it in a scenario I might actually try and release a little slower the idea of a leak in public is not a pleasant one so I guess ill see how I do Im seeing my doctor again soon and my urologist on the 10th so I am still trying with this

would you have any advice in regards to supplies?

thanks again for replying we seem to be a in a somewhat similiar situation so your a big help
if you want to ask anything feel free to and if you want to say or ask anything that you feel wouldnt be appropriate on the forum feel free to PM me
 
saix said:
medicaid is an american program from what I know. Im an australian so all I can get is a one off payment of a bit over 500 dollars a year for supplies which is currently being processed


Well I suggest getting Tranquility Slimline diapers then because you will use that 500 dollars worth pretty fast otherwise. I can hardly believe they only let you have 500 for incontinence supplies actually. I myself go through 2.5 diapers a day and that rounds out to 913 diapers a year. I don't know the Australian healthcare system but at least I can help somewhat since your health care system was most likely better then the one out here in the U.S (until maybe recently not sure about those numbers yet but we are going up on the list).


I'm not the sort of person who can confront others. I've never been good with people and due to a mix of things being anywhere but home is pretty big. I had a blood test today and was shaking at the hospital so lord knows what id do if I were confronted I can say Id retaliate but I have some big doubts


Don't be ashamed about that. You are a human being and I will still treat you like one. I never asked about your living situation because that's something that should be shared between PM's with us or anyone else you trust or on the mature topics forum that I will not post on but other's can give you advice about.

If there is no chance of me making it in a scenario I might actually try and release a little slower the idea of a leak in public is not a pleasant one so I guess ill see how I do I'm seeing my doctor again soon and my urologist on the 10th so I am still trying with this


Remember that's my situation not necessarily yours. At least you have people like me to encourage you if 24/7 is your option. Never forget that wearing diapers does not make you immature. :smile1:


would you have any advice in regards to supplies?


I would highly recommend that you use that 500 dollars to get at least reusable under pads that can be sent through the wash (preferably the cheapest in bulk prices of the right size under pad for you). I would also suggest you get reusable inserts as well because those can help minimize the amount of money you will have to spend in order manage this. Otherwise I highly recommend Tranquility Slimline diapers now because they are more cost effective then Molicare's and I doubt your insurance will cover for Molicare's anyways. Be advised somewhere along the line you will need to buy more diapers so I suggest Molicares if you have to pay with your own money and only buy them by the case so you can get them cheaper in bulk. Diapers usually sell less per diaper when bought in bulk so make sure you get them only by the caseload whenever possible if you plan on paying for them.


thanks again for replying we seem to be a in a somewhat similiar situation so your a big help
if you want to ask anything feel free to and if you want to say or ask anything that you feel wouldnt be appropriate on the forum feel free to PM me

Not a problem actually! I will not lie to you but I was into diapers for 20 years before I became IC only last year fyi. But that clearly does not make me immature which is why I know you're not immature for simply managing your incontinence in the healthiest way possible. I will most likely take you up on that offer for a PM actually but please feel free to post here as well. I don't know everything and there are people here who know more then me. :smile1:
 
accepted said:
Well I suggest getting Tranquility Slimline diapers then because you will use that 500 dollars worth pretty fast otherwise. I can hardly believe they only let you have 500 for incontinence supplies actually. I myself go through 2.5 diapers a day and that rounds out to 913 diapers a year. I don't know the Australian healthcare system but at least I can help somewhat since your health care system was most likely better then the one out here in the U.S (until maybe recently not sure about those numbers yet but we are going up on the list).





Don't be ashamed about that. You are a human being and I will still treat you like one. I never asked about your living situation because that's something that should be shared between PM's with us or anyone else you trust or on the mature topics forum that I will not post on but other's can give you advice about.




Remember that's my situation not necessarily yours. At least you have people like me to encourage you if 24/7 is your option. Never forget that wearing diapers does not make you immature. :smile1:





I would highly recommend that you use that 500 dollars to get at least reusable under pads that can be sent through the wash (preferably the cheapest in bulk prices of the right size under pad for you). I would also suggest you get reusable inserts as well because those can help minimize the amount of money you will have to spend in order manage this. Otherwise I highly recommend Tranquility Slimline diapers now because they are more cost effective then Molicare's and I doubt your insurance will cover for Molicare's anyways. Be advised somewhere along the line you will need to buy more diapers so I suggest Molicares if you have to pay with your own money and only buy them by the case so you can get them cheaper in bulk. Diapers usually sell less per diaper when bought in bulk so make sure you get them only by the caseload whenever possible if you plan on paying for them.




Not a problem actually! I will not lie to you but I was into diapers for 20 years before I became IC only last year fyi. But that clearly does not make me immature which is why I know you're not immature for simply managing your incontinence in the healthiest way possible. I will most likely take you up on that offer for a PM actually but please feel free to post here as well. I don't know everything and there are people here who know more then me. :smile1:

Tranquility arent really possible aside from not being readily available from what I can tell the payment is also being done through a third party the upside being a lot of support and free delivery I can also only really get anything from here http://caremmunitystore.com.au/
I also want to mention that the amount given isnt really meant to provide for the whole year more of a slight help in regards to things
I also only wear when Im going out, at home I just deal with the mess and cleanup
the payment has been processed yet either I still have several weeks
so basically once Im able to get a source of income I can buy some things out of pocket but until then Ill just have the funding assistance to buy items from that store although I am also planning to buy an item or two out of pocket form them so i wont run out

I need to try and get a handle on the whole anxiety thing dealing with people IRL is currently quite hard for me and Im sort of doubting my ability to function in many situations especially stressful ones
truth be told Im not even sure how a situation where someone calls me out on the diapers could happen so hopefully it never will

the thing is If trying to hold it would resort in a leak letting out it out earlier might be preferable I dont go out much so I wouldnt be doing this a dozen times a day or anything was meant to go out with friends today but it was cancelled
Id much rather wet a diaper a bit to avoid a leak rather than try and hold it then end up soaked anyway

maybe when I have a source of income I can invest in some products like plastic pants and reusable products but lord knows when that will be

I welcome posts questions and comments from anyone.help is help and I appreciate it
 
accepted said:
Well I suggest getting Tranquility Slimline diapers then because you will use that 500 dollars worth pretty fast otherwise. I can hardly believe they only let you have 500 for incontinence supplies actually. I myself go through 2.5 diapers a day and that rounds out to 913 diapers a year. I don't know the Australian healthcare system but at least I can help somewhat since your health care system was most likely better then the one out here in the U.S (until maybe recently not sure about those numbers yet but we are going up on the list).

Its because he lives in South Australia- for some reason our state government refuses to chip in like every other state in the country. If he lived in the eastern states, he'd be eligible for about 3x that.

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Hey Saix, glad to see the lovely girls at Caremmunity are looking after you. I discovered them about 18 months ago, best thing I ever did. they're so kind and helpful.


my advice from trial and error over the last 1 1/2 years, if using tab side pads, dont skimp out and use the cheaper brands. Tena, molicare, Abena or the new depends (they've really improved on their old pads) are a little pricey but will not fail you! the lille, vlessi and homebrand ones will fail. the tapes come loose, everytime.

any questions or advice needed from a fellow Adelaidean feel free to PM me.:biggrin:
 
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Bear85 said:
Its because he lives in South Australia- for some reason our state government refuses to chip in like every other state in the country. If he lived in the eastern states, he'd be eligible for about 3x that.

- - - Updated - - -

Hey Saix, glad to see the lovely girls at Caremmunity are looking after you. I discovered them about 18 months ago, best thing I ever did. they're so kind and helpful.


my advice from trial and error over the last 1 1/2 years, if using tab side pads, dont skimp out and use the cheaper brands. Tena, molicare, Abena or the new depends (they've really improved on their old pads) are a little pricey but will not fail you! the lille, vlessi and homebrand ones will fail. the tapes come loose, everytime.

any questions or advice needed from a fellow Adelaidean feel free to PM me.:biggrin:

thanks for the post nice to see another Australian

Caremmunity is very helpful indeed before them I saw a supplier who only stocked Lille products in size medium whereas caremmunity has a ton of products plus they deliver them which is nice if it werent for my doctor going through caremmunity I wouldnt have my caps either

I recently made the shift to molicare super plus cloth backed however apparently theres a vlessi one thats still plastic backed and holds a decent amount so might try that will probably just keep using molicare for the time being. abena and tena cost an arm and a leg

Tomorrow is the big day where I see my urologist again so Ill probably make another post depending on how it goes
 
They've got a back stock of Molicare comfort, which are plastic backed also (but a limited supply...)
I tried the molicare super plus cloth a cpl days ago... they were awful, and uncomfortable. went back today and they gave me some samples of the vlessi comfort.

I dont get mine delivered, last thing I need is my housemates seeing my nappies... or just asking too many questions about miscellaneous deliveries.
good luck for tomorrow, hope you get some good news......
 
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