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Thread: Losing Continence with Cerebral Palsy

  1. #1

    Default Losing Continence with Cerebral Palsy

    Hi:
    New here seeking help because I'm slowly accepting what my urologist told me on Friday. I have mild Cerebral Palsy (CP) and have never had issues with incontinence until October. After a terrible fall I became weaker and started losing my ability to stay continent. It has progressively worsened for the last few months. As of Friday my doctor recommended diapering 24/7. I am not an AB this is all very scary to me, but I want to accept the new changes to my body without fearing them.
    My doctor thinks plastic pants in the nights are the best option with cloth diapers. It has been very hard to adjust to this, and when I caught a glimpse of myself in the mirror the other day wearing this bunchy diaper I cried myself to sleep.
    I would greatly appreciate your thoughts and help on accepting this.
    The knowledge that I will be in diapers the rest of my life is almost overwhelming.

  2. #2

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    I know its never an ideal situation to have to wear diapers 24/7 but you gotta make the best of it. I know diapers are a scary thing for you right now but you have an opportunity to find whats most comfortable to you. I know your doctor suggested plastic pants and cloth diapers at night but you dont have to wear that if you dont want to, there are plenty of disposable options that may be more comfortable and less shocking to look at

  3. #3

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    Being an AB is not a prerequisite to getting used to diapers. It would only take time to get used to.

    If seeing yourself in a diaper is too depressing, remember that it's a tool. A lot of adults wear diapers for medical reasons.

  4. #4

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    Thank you LittleAyria. I am still so new to all of this and I'm scared to do anything that my dr. hasn't suggested, but are the disposable ones comfortable? I'm still getting used to waking up and having to spend the first hour of my day cleaning up. Will the disposable be safe for my skin? Thanks for the help

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    Thank you Mr Sun. I hope that I get used to them soon. Already I do feel secure knowing Im not going to have a public accident (which has already happened far too often in the last few months).

  5. #5

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    Well let me put it to you this way cpgurl. When it comes to being IC ask yourself this question. Why should anyone even care about any stigma that comes from a medical condition that you have no control over that requires a medical device? That's like telling someone they should be embarrassed for having a need for say a pace maker for a heart condition or a wheelchair for paralysis. I think we can both see why it's wrong to feel embarrassed about having to wear a different kind of underwear correct? It's alright to have to need to wear diapers if you need them to manage a medical condition correct? I am not saying this because I am AB/DL. I am saying this because it's wrong of the opinions of some ridiculous social stigma to make anyone feel embarrassed about needing to wear diapers. Under no circumstances should anyone be embarrassed about being IC. I myself am IC and I know how much it sucks. But I never let opinions of other people decide for me whether I should feel embarrassed or not now do I? You are a human being and there's nothing wrong with wearing diapers to manage incontinence. We are not going to judge you here and you deserve to not have to dislike yourself for simply being IC. I call myself accepted not just because I am. (that is still true but there's so much more to it then that) I call myself accepted because I had to take a crash course in learning how to tolerate myself for being what I am.(AB/DL in this case) Then only after barely learning how to tolerate myself learning how to tolerate that I am most likely going to have to live with being IC myself for the rest of my life as well probably on top of that at the worst possible time. Go ahead and love who and what you are which includes not being ashamed of having to wear diapers.Why? Because you deserve and need to do so that's why. If you want we can PM each other and talk some more if that would help.

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    Quote Originally Posted by cpgurl View Post
    I am still so new to all of this and I'm scared to do anything that my dr. hasn't suggested, but are the disposable ones comfortable? I'm still getting used to waking up and having to spend the first hour of my day cleaning up. Will the disposable be safe for my skin? Thanks for the help
    Well Ironically I would recommend that you use baby skin care products to manage skin issues. You see new born babies have skin even more sensitive then a adult and as a result the skin care products for them are both cheap and highly effective for adults. Since your not AB I would recommend that you use unscented petroleum jelly and cornstarch baby powder (Talcum powder is a carcinogen known to cause lung cancer hence I recommend cornstarch.) If you somehow feel even more embarrassed about using stuff like that think of it this way. If you went out in the sun you would use sunblock to avoid getting sunburns correct? Well using something like Vaseline petroleum jelly and/or cornstarch baby powder should be thought of in the same way. Most likely no one will notice simply because of the lack of scents and besides the scents in most of that stuff happen to be bad for skin anyways. That's why I suggested using unscented baby skin care products to manage rash if that is going to be a problem. I know it works simply because I am Incontinent and I can honestly say I have never gotten a diaper rash in my life since I started going 24/7 about a year ago.

    Just so you know disposables are a lot more comfortable and in fact are less likely to leak although they are more expensive. From a health point of view cloth diapers are less likely to cause rash but your more likely to get a infection because Ideally you want to store a cloth diaper until you get it into the wash correct? In the end I would suggest you try some disposables and try to use cloth diapers because it's beneficial to have both for various reasons. The reason why you want to wait on getting cloth diapers is that their initial cost is a lot higher and you want to make very sure you know you have the right size of diaper before you pay like $200 for only 6 cloth diapers. Also I would recommend that you buy sample packs first before buying any disposable diaper by the case load. here's a few sites where you can buy various cloth as well as disposable diapers.

    http://www.idiaper.com/
    I have recently tried the new Northshore supreme diapers and I suspect that these will be perfect for you but I could be wrong about that. The Northshore supremes have particularly silent plastic backing on them so they are especially discreet since your most likely self conscious about the noise plastic backed diapers might make. http://www.northshorecare.com/
    http://xpmedical.com/
    https://wellnessbriefs.com/
    http://www.llmedico.com/

    Just so you know I do want to mention that there's a false perception that cloth-like backed disposables are somehow better then plastic backed. About the only thing cloth-like backed disposables have is the fact that they are usually less noisy (The Northshore supremes being comparably quiet happens to be the only exception to this). The advantages of plastic backed diapers is they do not break down as easily and they don't stretch based upon your activity level as much so they retain a good fit for as long as your likely to use them. Also plastic backed diapers at least appear to be less likely to leak then a disposable that has cloth-like backing on them. Of course you could wear absorbent underwear and those can do a good job as well. The one thing I recommend though above all else is order something online because they will usually ship your order discreetly to the front door and no one will ever know you need diapers for medical reasons unless you want them to know. the other reason why you want to order online is because I have yet to find a diaper on a store shelf that does it intended job right and I have been actively looking for a while now. You could take a look at thrift stores and possibly get lucky if your not afraid to go through a checkout line with a pack of diapers in front of people. Of course there's advantages to using reusable diapers as well as they will cost you less in the long run. Do you have medicaid insurance? If you do I can honestly say that you can get coverage for diapers as well. I know medicaid does cover for diapers because I myself have that as well. I hope this information helps.
    Last edited by giantguy99; 30-Dec-2014 at 05:10.

  6. #6

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    Thank you so much for your comments accepted. I have been feeling better ever since I found this forum and to think that there are people who care about what I am going thru and want to help. I will get these products you recommend immediately. May I ask...being IC as you are, how did you come to love and accept this part of your life? I will need to at some point be honest with my mother, who of course wants me married with children like YESTERDAY. I cannot bear the thought of that embarrassment.

  7. #7

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    Don't feel bad about yourself cpgurl, it is something that is totally beyond your control, just do what you need to and live life. It does not define who you are in any way, anyone who thinks otherwise is not worth your time. Disposables are very comfortable at night, I have used them and cloth for 20+ years. A good skin protectant cream with zinc is a MUST to stave off any rash risks, lots of good ones to choose from at the local pharmacy. Molicare, Abena and Dry 27/7 are the tops for regular adult products, and Bambino's offer up some of the best on the market, some with prints and some without. A w3ashable bed pad, or several (larger is better) are also a must, you can avoid the dreaded plastic sheet by using them. Talk to your doctor about all this, as it is new and scary, we all had lots of questions when issues first started, I know I spent hours talking with my incontinence nurse about options, but she was not pro-diaper in any way, but the choice is mine and not hers. Do what is best for you! Stay in touch with us here, we are all rooting for you!

  8. #8

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    Quote Originally Posted by cpgurl View Post
    Thank you so much for your comments accepted. I have been feeling better ever since I found this forum and to think that there are people who care about what I am going thru and want to help. I will get these products you recommend immediately. May I ask...being IC as you are, how did you come to love and accept this part of your life? I will need to at some point be honest with my mother, who of course wants me married with children like YESTERDAY. I cannot bear the thought of that embarrassment.
    I will answer your question about how I came to be this way. Please keep in mind I am giving you the short version of that story as it would take up huge amounts of paragraphs for me to explain otherwise which would be unpractical. Long story short I never really had a chance to accept myself until I came here on ADISC due significant mental health issues as well being chronically homeless. When I did find out what a AB/DL was (on accident at that) I knew instantly I had to accept myself or literally die trying because I simply could not even hope to have the mental capacity to handle this any other way. I would have went mad again and most likely would have killed myself if I did otherwise (or worse) so I had to embrace being self accepting wholesale or be destroyed.

    You see I was into diapers since I was 16 years old to help cope with the stress of past trauma's and not because I was IC at first. I never really used the diapers for their intended purpose until genuine accidents started to occur. When I had a accident in the middle of a shopping mall (early this year) I was shocked and lucky at the same time because I just happened to already be wearing a diaper simply for fun and it turned out I actually needed it. The primary reason why this was complicated was because I had barely accepted being AB/DL at all in the first place (that was January or February of this year I think and I was a member of ADISC for only 4-5 months when that happened). Now here I am thinking I have to accept that I am incontinent as well on top of what is most likely the significant life changing event of my entire life. The reason why I had to accept my incontinence was because I was concerned about how this would effect my mind which had already been through enough as it is(especially this early into a serious life changing event in my life). So from my point of view I had to accept that wearing diapers to manage incontinence was nothing to be ashamed of or die trying just like accepting that I was AB/DL in that sense.

    If you need help with talking to your mom I can help you with that. It's up to you what you want to do of course. I did want to say if your mom tries to convince you that using medication is better then wearing diapers then she is not respecting you. I wear diapers not because they make me feel better for therapeutic purposes (that's just a small bonus that I might as well go for because being incontinent sucks anyways) but because I prefer diapers over the side effects of medication that I could be taking. Medications have side effects that actually will make even diapers a more attractive choice because diapers will not sterilize or kill the patient. The odds of things getting that serious when it comes to medication are not that good of course but they can happen. I would suggest you follow your doctors advice though. It's rare for a doctor to actually recommend wearing diapers 24/7 but it is a viable option with the fewest side effects which includes only diaper rash as far as physical health is concerned and the social implications. I suspect your mom will respect you though especially since your doctor is recommending you wear diapers.

    Now just so you know under no circumstances should you diminish your need for support in light of the hardship I went through possibly being worse then the hardship your going through. For all I know you could very well have been through more then me or I could have had it harder then you. That should not even be a consideration because you deserve support like everyone else regardless of how hard life has been to you. So don't let anyone else's hardships make you feel ashamed to seek help because you need it and deserve it. That's why ADISC exists after all. We are a support site and that is precisely what you will find here-support.

  9. #9

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    Hi there cpgurl and welcome!

    My INCO situation was caused by a fall, too...over 20 years ago. at first I thought maybe I would not walk again, but extensive physical therapy helped me regain a lot of what I lost. All this took over four years. We each come to our own best solutions to handle bladder incon over time. Trial and error seems to be a common method, but helpful tips are really appreciated, too. At least we have all come to learn we are NOT alone in this and can share the support and information right here. I do the disposable diaper and plastic (vinyl) pants routine every day and have worked through all the emotions over it. Few are the wiser that I even deal with this, and thats OK by me.

    Andrew

  10. #10

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    Quote Originally Posted by cpgurl View Post
    Hi:
    New here seeking help because I'm slowly accepting what my urologist told me on Friday. I have mild Cerebral Palsy (CP) and have never had issues with incontinence until October. After a terrible fall I became weaker and started losing my ability to stay continent. It has progressively worsened for the last few months. As of Friday my doctor recommended diapering 24/7. I am not an AB this is all very scary to me, but I want to accept the new changes to my body without fearing them.
    My doctor thinks plastic pants in the nights are the best option with cloth diapers. It has been very hard to adjust to this, and when I caught a glimpse of myself in the mirror the other day wearing this bunchy diaper I cried myself to sleep.
    I would greatly appreciate your thoughts and help on accepting this.
    The knowledge that I will be in diapers the rest of my life is almost overwhelming.
    both Autism and Cerebral Palsy,

    Good Evening.
    I myself have Autism and Cerebral Palsy and I wear diapers 24/7.
    I am not ashamed to have to wear diapers.
    I use disposable adult diapers and use plastic pants over them at night when I sleep.

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