Symptoms of my incontinence started in my mid 20’s, and have slowly gotten worse as the years have gone by. The quacks *( doctors ) *say they can’t do anything.
Last year I lost the ‘urge to pee’, and most of the sensations in my bladder and penis . This year I’m starting to have more issues with fecal accidents .
I’ve been forced to wear diapers 24/7 for some time now … to tell you the truth, I’m very afraid of becoming completely incontinent ( double incontinent ) and losing all the control I have left .
Sorry you do not have any answers to your condition and your future with these problems. Forgive me for my ignorance, but was this the result of an injury or something that has just begun over time? I’m assuming you have seen all of the specialist for it, were they able to give you a definitive diagnosis? If I’m asking too many questions let me know.
It is very dificult to not worry about the future when so much of your freedom is on the line because of an ailment that you cannot control. As hard as it is try to stay positive an do what you can to keep the future from controling your life right now. The future is uncertain, be in the present. Enjoy the time you have now instead of lamenting the time you missed later.
That is about all the more advice I can give. Sorry again you are going through this.
Having been totally IC due to MS and breaking my neck,( that is not what made me a quad, luckily I’m walking now), try to use the toilet on each diaper change. I’ve found it helps somewhat.
Although I wear cloth most of the time cleaning a diaper from #2 isn’t the easy. I guess you will need to accept what is happening to you with the knowledge things could get worse.
When I first started having problems I went to a school where I saw children being brought in with many problems. My problems were trivial to theirs. I played triple a baseball while in the service, was in the service, could do almost anything I wanted biking you name it. I’m great full for my many years that I have had where these children couldn’t have what I experienced. Oh how blessed I am.
Compleatly understandble and im deeply sorry about youre progressive problems
The best advice i can give is try to somehow accept that this MAY be the case I got my IBS diagnose in my 20 ´s and well here i am i was also doomed to get this due to my diagnosis + my mom who got this older older age ) & also be prepared for it (incl mentaly ) by wearing good grade protection and all the rest . Thats pretty much all we can do im afraid.
Its NOT nice nor do i in any way shape form like having to be in this darn things 24 /7 and all the rest with Severe etc… IC BUT ive learnt to deal with it and accepted my faith.
So sorry to hear your going through all these issue. It is scary to experience such dramatic changes with in your body. Especially when you have no control over them. I’m a believer that everything happens for a reason, don’t always understand why but there is a reason.
acceptance is the key and learning how to best accumulate to a new life style. a vast majority of people have some kind of issue. Whether it be they wear glasses, are blind, deaf, diabetic and or are facing a major medical issue. I considered myself very lucky to only be incontinent compared to other possible medical situations. Yes I pee myself and occasionally soil myself. I wear diapers 24/7 to combat those issues. No one else knows I wear other then my wife. No one has ever said hey you’re wearing a diaper or you smell. The public will never know if you take precautions like wearing appropriate clothing.
Im sure your saying it isn’t easy to accept and your right. Fight like hell to keep your continence. Like others have said use the bathroom every time you change. Try to schedule time every day to try and have a BM. Train your body. It may not eliminate all fecal accidents but it can limit them.
Remember your not alone. Thousands of us are in the same boat and completely understand how your feeling and are hear to support you!
Sorry to hear you are now experiencing both bladder and bowel issues, unfortunately becoming dual incontinent is a lot harder to accept then just a bladder issue. It is scary at at first but with time and acceptance dealing with progressive control loss does get easier, its been 5 plus years for me and like you I am experiencing progressive control loss of both bladder and now bowel control.
Some times there is nothing doctors can do and we just have to accept our new reality control wise as long as you have a diaper you can trust to contain any eventual accident it does get easier to manage. and Please remember you are not alone in having to deal with IC issues even though it does feel that way some times when you are in a public setting and your bowels decide to release.
After 5 years when my bladder releases and floods my diaper I no longer react or in some cases notice when its a slow release and all I feel is my diaper expanding, some times its the same with a slight bowel accident it feels like gas passing but its not
I know its hard to accept but incontinence is not the worst thing that can go wrong with our body‘s it just makes life a bit more challenging.
Remember we are all here to help and support each other as we are all in the same boat dealing with IC issues
I’m scared of it too honestly, I thought I was getting better then today when I bent over to get something from the fridge I completely voided my bladder, and I barely felt it coming on. I don’t want to have to depend on these things all the time or lose feeling but from what a lot of other people are saying, that’s what’s coming. I find myself at night just sitting in the bathroom staring at the still-folded diaper just feeling defeated. I wake up dry most nights but once it was completely full, so for the time being I need thick ones at night.
I’ve only had one slight fecal accident but if another one happens I don’t know how I’ll deal with it. Sorry for being negative but it really does scare me too.
Hopefully you have seen a urologist and had a few tests done to see whats happening, try not to feel defeated (I know its hard at first) some times there is simply nothing you can do to avoid being back in diapers as an adult. Feeling down or defeated at first is a normal response as we all went through similar stages.
Incontinence issues can appear to get better for a while (more dry times) but depending on what’s causing your bladder issue it could turn in to bad days with out warning thus you still need to wear as a just incase. I would rather change out of a dry diaper then risk a full unprotected flood
acceptance of Having to wear and use diapers becomes easier over time, its a medical issue you have no control of so there no reason to feel defeated as far as medical issues go incontinence is a minor issue to deal with as it really does not stop you from living a full and productive life its just makes is a bit more challenging when you travel
Over time your will stop worrying about being diapered and it will simply become part of your daily life and at times you will be happy you are diapered especially when stuck in traffic or the bathroom is closed and you need to pee or you are in a movie and you do not have to step out to pee. I try to look on the bright side and enjoy the benefits of being diapered since I have no choice but to wear as my dry days are long gone.
Totally understand what you are going through. I have been able to enjoy life just being bladder incontinent. Now that I am having more bowel issues does cause some concerns for me. I was using enemas and laxatives to control when I would mess lessening the chances of messing when I am not at home. The medication I am on now at times does cause some messy accidents when I am not home. Making sure I have diapers with leg guards on and keep extra diapers and clothes in my car at all time helps. The doctors warned me that the damage to my nerves in the spine may lead to what is now going on, but I didn’t want to believe them. Know it’s hard and scary being out and about because something might happen, but for me, I need to continue with the quality of life that I want to live so I have mentally and materially been prepairing for this and when things happens, I do my best to not let it get me down. There are so many others out there that have things a whole lot worse than me and they keep pushing through, so that is part of my insperation. If they can push through and continue to live, then I can do the same thing.
In in the same boat so to speak though without your anatomy, I fear progressive loss of bowel and urine control, I’m still able to semi hold in bowel movements for the most part for me it’s uncontrollable leakage currently, tho urinary wise that’s a bit harder but still not completely without control. unfortunately seemingly things are slowly getting worse, that’s why I joined here inorder to try and get advice/help dealing with situations. The thing for me that helped the most initially until I found this forum, was talking about it with my partner and her not making a big deal about it even though it’s still a big insecurity for me. As with my sexuality I think it’s just going to take time and understanding that it’s not a problem / it will change over time but that’s not abnormal everyone has changes (wether it’s continence or other) and just a part who I/you are.
