IC - time to give up using the toilet for #1?

Dinotopian2002

Breathe Deep, Seek Peace
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  1. Diaper Lover
  2. Incontinent
Hi guys

I haven’t posted about this much, but this has been weighing on my mind for the last six months - my bladder control is now close to zero but the final degree of control is clinging on by its fingernails.

A bit of backstory - I’ve been in diapers 24/7 since I was a teen due to neurological issues. It’s taken over 10 years to get a diagnosis but there’s probably other co-morbidity there too.

These issues also cause fatigue & joint pain below the waist so I use a wheelchair most of the time to get around. But despite this I’m still very active and independent - I just need wheels and padding.

I have been trying to use the toilet when I do feel the urge, and I can make it, but I’ve been thinking, is it really worth it? Keeping in mind that I’ve got limited energy, and using a toilet is more difficult and takes longer for me than a non-disabled person.

Maybe it’s time to face facts - I’m disabled and incontinent and this isn’t going to get any better. At this stage it makes sense. But I don’t want to surrender what bladder control I have left because I’ll never get it back. It’s quite a bind.

Advice?

Breathe Deep, Seek Peace
Dinotopian2002
 
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It has to be something you decide for yourself but I can see where you are coming from. I must admit for the most part I just use my nappies. It is jus easier than fighting the inevitable.
 
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I think you should just stop using the toilet if its causing you pain. I am 27/7 too it has made my way easier when I started using diapers full time.
 
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This is a personal issue. I know from my own experience that when you surrender and give up what little control you have, it feels both concerning and liberating. Knowing that you probably will never be able to gain it back is troubling and bit depressing. But on the other hand not having the painful urge and embarrassment of wet pants from not making it is better. I don't worry about long check out lines, restrooms being clean and available or traffic jams. I still do most of what I did before, just with fewer toilet breaks. Now the down side of things is leaks and place to discreetly change. But I still hunt,fish, swim and still respond as a volunteer firefighter. But the decision is yours and yours alone to make. Goodluck. And if you want to chat send me a message and I'll answer as soon as I can
 
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That's definitely not a decision to be made lightly. I struggled with it myself for many years. In my teens and early 20s I really made some strong efforts to consistently make the toilet and potentially build up some level of control over my bladder, but then I would have setbacks and get discouraged. I had a lot of anxiety and stress about it and it rushing out of class to try to make the washroom was effecting my performance in school. I decided to back-burner my "potty training" after some tough semesters in Uni and gave up using the toilet to urinate altogether a few years later. It has been 5+ years and although it has made some decisions and habits easier, the loss of what little warning/control I had is very real. What begins as a conscious decision to just relax and use your diaper instead of holding and immediately rushing to the toilet will become unconscious lack of control.
 
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Dinotopian2002 said:
Hi guys

I haven’t posted about this much, but this has been weighing on my mind for the last six months - my bladder control is now close to zero but the final degree of control is clinging on by its fingernails.

A bit of backstory - I’ve been in diapers 24/7 since I was a teen due to neurological issues. It’s taken over 10 years to get a diagnosis but there’s probably other co-morbidity there too.

These issues also cause fatigue & joint pain below the waist so I use a wheelchair most of the time to get around. But despite this I’m still very active and independent - I just need wheels and padding.

I have been trying to use the toilet when I do feel the urge, and I can make it, but I’ve been thinking, is it really worth it? Keeping in mind that I’ve got limited energy, and using a toilet is more difficult and takes longer for me than a non-disabled person.

Maybe it’s time to face facts - I’m disabled and incontinent and this isn’t going to get any better. At this stage it makes sense. But I don’t want to surrender what bladder control I have left because I’ll never get it back. It’s quite a bind.

Advice?

Breathe Deep, Seek Peace
Dinotopian2002
I'm with you on that one, spinal issues getting worse mine is centeral stenosis at c5/c6, c6/7 ruptured both disks 20 years ago now it's calcified into the centeral canal in the cervical vertebrae area causing muscle weakness below that level and now ruptured one in the lumbar region at l/3, l/4 pain is absolutely intolerable can barely walk 50 feet primary MD got a script for an electric wheelchair because arm use is so diminished manual chair would be of no use so I use the diaper mainly for #1 toilet only for #2 I take 60 mgs of water pills for congestive heart problems and I just turned 60 years old in May mainly due to autoimmune disease so getting up to pee every half hour is for the birds I've even was told by Primary MD that a indwelling catheter is an option but it puts a risk of infection a lot higher because of the autoimmune disease weakens the ability to fight off infections so i made the decision to use the diaper full time for urinary problems, sorry for the long rant take care I'm with you on your decision.
 
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I don't have a lot of control left and I too seem to lose more of it every year but I work really hard to keep what little I have left. I appreciate being able to defer a void or minimize one for a few seconds to a couple minutes for little things like:
  • Being able to avoid peeing in the shower at the gym
  • avoid accidents while I'm walking onto the pool deck to swim
  • Not getting my carpet wet while changing clothes
  • Stopping a large surge part way through when I know my protection is likely to leak
  • my wife...
It is demoralizing when you constantly fail... but I have come to accept failure and enjoy success even though with respect to this, I now fail more often than I succeed.
 
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Diaperedff1 said:
This is a personal issue. I know from my own experience that when you surrender and give up what little control you have, it feels both concerning and liberating. Knowing that you probably will never be able to gain it back is troubling and bit depressing. But on the other hand not having the painful urge and embarrassment of wet pants from not making it is better. I don't worry about long check out lines, restrooms being clean and available or traffic jams. I still do most of what I did before, just with fewer toilet breaks. Now the down side of things is leaks and place to discreetly change. But I still hunt,fish, swim and still respond as a volunteer firefighter. But the decision is yours and yours alone to make. Goodluck. And if you want to chat send me a message and I'll answer as soon as I can
this is right where i'm at....the middle of the crossroads....concerning, liberating. yap...thank you for sharing.

to OP: such an incredibly a personal thing....only for you to choose at this point....it *may* be inevitable, however continuing to practice and utilize your muscles, the atrophy will occur slower than if you choose to let the muscles give up so to speak.
 
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Dinotopian2002 said:
Hi guys

I haven’t posted about this much, but this has been weighing on my mind for the last six months - my bladder control is now close to zero but the final degree of control is clinging on by its fingernails.

A bit of backstory - I’ve been in diapers 24/7 since I was a teen due to neurological issues. It’s taken over 10 years to get a diagnosis but there’s probably other co-morbidity there too.

These issues also cause fatigue & joint pain below the waist so I use a wheelchair most of the time to get around. But despite this I’m still very active and independent - I just need wheels and padding.

I have been trying to use the toilet when I do feel the urge, and I can make it, but I’ve been thinking, is it really worth it? Keeping in mind that I’ve got limited energy, and using a toilet is more difficult and takes longer for me than a non-disabled person.

Maybe it’s time to face facts - I’m disabled and incontinent and this isn’t going to get any better. At this stage it makes sense. But I don’t want to surrender what bladder control I have left because I’ll never get it back. It’s quite a bind.

Advice?

Breathe Deep, Seek Peace
Dinotopian2002
Definitely a personal decision. I’ve got urges that can’t be ignored/stopped so I wear all the time. I do still have some control and I’m hanging on to it as long as I can. Obviously, times I can’t make it, I’m ok with using my diaper, and if I’m more than a minute away from facilities it’s going to get used. I do still make the efforts to make it when I can kinda like what Ecoincon said.

Understand your situation though and I sure wouldn’t fault you for using a diaper exclusively. If it makes life easier, it’s a viable solution to your situation.
 
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Wearing a Nappy has given me so much freedom, in years gone by the moment I set foot out of the door I had to start the toilet hunt, a never ending hunt just so I could get to go #1 very briefly multiple times when out, toilets were fairly easy to find especially in towns, now it can be a real challenge and I still will use one if I can find one especially on long motorway trips.
But these days my bladder decides what it is going to do and then does it so finding a toilet is thankfully an old game I no longer play.
 
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Dinotopian2002 said:
Hi guys

I haven’t posted about this much, but this has been weighing on my mind for the last six months - my bladder control is now close to zero but the final degree of control is clinging on by its fingernails.

A bit of backstory - I’ve been in diapers 24/7 since I was a teen due to neurological issues. It’s taken over 10 years to get a diagnosis but there’s probably other co-morbidity there too.

These issues also cause fatigue & joint pain below the waist so I use a wheelchair most of the time to get around. But despite this I’m still very active and independent - I just need wheels and padding.

I have been trying to use the toilet when I do feel the urge, and I can make it, but I’ve been thinking, is it really worth it? Keeping in mind that I’ve got limited energy, and using a toilet is more difficult and takes longer for me than a non-disabled person.

Maybe it’s time to face facts - I’m disabled and incontinent and this isn’t going to get any better. At this stage it makes sense. But I don’t want to surrender what bladder control I have left because I’ll never get it back. It’s quite a bind.

Advice?

Breathe Deep, Seek Peace
Dinotopian2002
My personal stance is give up and embrace diapers.
 
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Dinotopian2002 said:
Hi guys

Maybe it’s time to face facts - I’m disabled and incontinent and this isn’t going to get any better. At this stage it makes sense. But I don’t want to surrender what bladder control I have left because I’ll never get it back. It’s quite a bind.

Advice?
Dinotopian2002
The point for me would be: what is the best to give me my "quality of life"? If it still gives you happiness and satisfaction if you make it to the toilet, then don't give this up. If you feel more happy to enjoy the freedom not having to stand the pain of an urge but simply can release, no matter where you are or what you are doing right then, don't feel ashamed to use your diapers.

For me personally it's out of question, I already decided that I prefer very much to keep my active and social life the same as it was before becoming IC as I found that wearing appropriate protection exactly enables me to do so. I prefer to use my protection - which nobody lese can see - instead of having to arrange my life around my IC (and bathrooms)!
 
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Hi guys, thanks for the responses, this has given me a lot of food for thought.

Maybe I should clear a couple of things up.
  • Firstly, whatever happens, I’m incontinent and I need a diaper 24/7, this nerve damage isn’t going anywhere. I’m also disabled, in chronic pain and unable to walk far.
  • Secondly, this condition fluctuates - not only do my fatigue, pain sensitivity and lack of bladder control flex up and down, they also do so independently of each other.
  • Thirdly, so does my mental health. These days, not much worries me - only if I’ll have the energy to face it. Unfortunately as that question can never be fully answered, this causes chronic anxiety.
  • Fourthly, my life has become much, much busier this year, due to work and family commitments. This puts a lot of strain on my tired body and usually something gives out - usually it’s my bladder, because with the right diaper this is the most discreet. But I’m also looking to get an electric wheelchair- just so I can conserve energy while I work.
For the last 5-7 years I’ve tried to use a toilet where possible but not being ashamed to use my diaper when I can’t. But at home I try and use a toilet when possible.

I think now is time to take the next step, still keep a little control but not worry about using my diaper even at home, especially on bad days.

I’ll still use the toilet for the time being, but only for going #2 or between diaper changes, so my diaper stays drier for longer.

At the end of the day, I’ve got a life to lead and diapers are meant to make this issue less stressful, not more.

Thanks for your help guys 😊

Breathe Deep, Seek Peace
Dinotopian2002
 
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My U-IC is from a Car Crash and the resulting surgeries that left me with tiny onboard capacity and fluctuating spinal communications as a result 24/7, U-IC.

My belief is to maintain as much of my ability as possible. The reasons are:

Early warning signs of the onset or worsening illnesses as continence is a body signal of changes or onsets.
If am there, why not use the toilet as in combination regarding above, it provides me moments of dryness, which is great for the skin!
Physical moment of oneself helps maintain some kind of muscle mass, which helps the heart /lungs to remain healthy.
Mental pleasure of still being able too!

One of the joys of wearing protection is that I can be out and about as when I am, my available time from notice is moments to maybe a minute. Searching for a toilet is a non-started.

So, from were I am, I would not give-up that small ability as it can bring a small smile while setting there upon the throne. :)
 
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I think most IC people tried to hold it. At least I did. My mom helped with my toilet training but it never really worked. I think I was more frustrated then by my mom. Despite all the times I sat on the toilet trying to somehow "learned" control, I know it was always a complete failure. I even tried when I was in high school. I would go to the bathroom for hours. Especially when I was having BM accidents. Toilet training never worked for me. All it did was giving me even more stress and frustration. I would sit on the toilet for an hour and 20 minutes after I'd flood my diaper. I just really wanted to wear regular underwear. By the time I went to college I stopped trying. Even though wearing a diaper, it was easier than trying to hold it. By the time I "learned" bowel management and rarely had daytime BM accidents, I finally figured how to use diet and have the accidents in the early morning.. So at least I wasn't loading my diaper during classes (disaster). Kind of funny that learning how to relax is pretty easy. I've always been IC. Even though I tried "potty training," sometimes you have to simply let go. Today? I don't stress. I don't like being IC but let's face it, it's not fatal. Of course I worry if someone might notice, maybe a leak or possible odor. But I've been IC long enough that you have to accept yourself.
 
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Having to sit on the throne, make your legs fall asleep, failing to achieve "the mission", sitting in a different chair, and having to run back to the bathroom in 5-10 minutes..I get this
 
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I do a hybrid model. Whenever I'm home or out and about, Ill try to use the bathroom when possible. But when I'm at work, especially the morning when I work best, I almost always just let myself use my diaper. I have ADHD, so all the trips to the bathroom really kill my focus, so I just remove the need to go to the bathroom. I'm hoping it doesn't cause long term issues, but in the short term I need to be able to work.
 
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CrossfireDiaperHurricane said:
I think most IC people tried to hold it. At least I did. My mom helped with my toilet training but it never really worked. I think I was more frustrated then by my mom. Despite all the times I sat on the toilet trying to somehow "learned" control, I know it was always a complete failure. I even tried when I was in high school. I would go to the bathroom for hours. Especially when I was having BM accidents. Toilet training never worked for me. All it did was giving me even more stress and frustration. I would sit on the toilet for an hour and 20 minutes after I'd flood my diaper. I just really wanted to wear regular underwear. By the time I went to college I stopped trying. Even though wearing a diaper, it was easier than trying to hold it. By the time I "learned" bowel management and rarely had daytime BM accidents, I finally figured how to use diet and have the accidents in the early morning.. So at least I wasn't loading my diaper during classes (disaster). Kind of funny that learning how to relax is pretty easy. I've always been IC. Even though I tried "potty training," sometimes you have to simply let go. Today? I don't stress. I don't like being IC but let's face it, it's not fatal. Of course I worry if someone might notice, maybe a leak or possible odor. But I've been IC long enough that you have to accept yourself.
When I was in my 10 to 12 years old I tried to poop in the potty but 8 out of 10 it up my diaper every time so I gave up. 2/10 all the time went in the toilet perfectly
 
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DiaperDiva said:
That's definitely not a decision to be made lightly. I struggled with it myself for many years. In my teens and early 20s I really made some strong efforts I would have setbacks and get discouraged. I had a lot of anxiety and stress about it I decided to back-burner my "potty training"
Being an IC member of the incontinence forum, I know that almost everyone tried to "potty training" themselves. I don't remember what it was like when I was 3. But my mother said I was more frustrated than she was. When the physical ability became known, my mom just gave up. When I started to go to high school (or even before), I used to sit in my own bathroom for hours. My "strong efforts" continued for years. But whatever I tried I always became discouraged when I had the regular strong urgency and would wet myself a few hours later. It became so stressful. No matter what I was doing (sitting on the toilet), I knew that trying to wear normal underwear would never work. How long did I try? For a few years. When you finally accept the fact that you'll always have to wear a diaper, I simply stopped trying.

When you're a longtime IC person, despite all the efforts, I just have to accept it. It's not fun. But at some point you have to find a way to accept it. At least I'm not having BM accident everyday. I know that it's difficult. But having to understand that diapers allowed me to live a fairly normal life. When I look back to all the frustrating times when I was in school, I'm just trying to LIVE. I have great family and a understanding girlfriend. That's enough for me.
 
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newt said:
I do a hybrid model. Whenever I'm home or out and about, Ill try to use the bathroom when possible. But when I'm at work, especially the morning when I work best, I almost always just let myself use my diaper. I have ADHD, so all the trips to the bathroom really kill my focus, so I just remove the need to go to the bathroom. I'm hoping it doesn't cause long term issues, but in the short term I need to be able to work.
I fully understand what you're doing - using the bathroom when possible. But the situation for the thread starter is different - he has some disabilities and uses most times a wheelchair, so it' not easy to say for him "I simply use the bathroom when possible" - he tells the this needs quite a lot energy from him.
Dinotopian2002, I feel with you and fully understand your thoughts for simply using your diapers and saving you energy for more important and fulfilling things than just using a toilet. If you feel so, don't struggle with thoughts if this is the right thing to do! Live your life in that way you feel is the best!
 
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