How to move forward?

[Anonymous12]

Hi there,

   As a follow up to my last post, I’ve talked to my doctors and it looks like I am mildly incontinent due to my body having both bladder and bowel spasms. While I like the comfort that pull-ups have, sometimes I go to the toilet and it’s depressing so see I’ve had a small bowel movement without me knowing. I guess I’m still processing this fact. I didn’t think that I would ever be this disabled due to what my doctors told my parents at age 5. I’ve also learned the hard way that doctors’ projections about the course of disabilities can sometimes be inaccurate.

  I’m glad that I have only spasms and that I have a medical reason to wear comfortable underwear but I’m kind of afraid of what the future will hold (I’m 25). I have a couple questions: How do I go about getting used to wearing pull-ups? How do I get used to having to have people pull back my waistband if I feel something uncomfortable? How do I not perpetuate the stereotype that not all people in wheelchairs are incontinent?

    Thank you guys for reading this and I hope you enjoy your day.

[Checkingoutall]

I understand a lot of what you are going through and feeling.  I lost total bladder control when I was 42 and at that time, I was told in time I would most likely start losing bowel control.  My doctors didn't give a time frame because they knew they couldn't.  Because of full on bladder loss, I can't use pull-ups, I have to use tape on diapers.

The doctors have been surprised at how well I am able to live the quality of life I live wearing and using diapers.  They wanted to do surgery and have me wear a bag attached to my belly for my pee, and if/when I have bowel problems the same for that, but I told them no, because diapers have allowed me to be fully functional with everything in life that I want and need to do.

During these 15yrs of having to wear diapers, I have never considered myself as disabled, in fact I considered my self in a much better place because I no longer had to stop what I am doing to go find a bathroom, get to sit through a whole movie, get to drive longer, get more work done, and the list goes on and on.  Even though all this was good for me, yes there were challenges that I have had to overcome.  Some of those challenges were how and where to change my diaper.  Who should know I am wearing diapers, what diaper is best for me, and so on.  It's taken time for me to work all that out and I am glad for places like this site and other AB/DL sites and support sites that helped me figure a lot of this out.

The biggest thing for you is to learn and understand your body, understand what protection will work best for you and how you want it to work for you.  For me if I just dribbled, I still wouldn't use pull-ups when at work or out because I never want to take my pants off in order to change.  I have learned what stores, restaurants, gas stations and such have a private bathroom that I can go into and change if I need to change while I am out.  When it comes to letting others know, for me it's been on a need to know basis and in these 15yrs, there may be only about 15 people that I personally know that I have told them about my need to wear diapers. 

I know I have noted lot here and I do hope something here does help you.  Just keep your head held high and be proud that there are good pull-ups and diapers out there for us to use that allow us to live the quality of life we want and need to live.

[joemama]

Very well said on all aspects of living life in diapers.  Well done @Checkingoutall

 

[steve in diaps]

It does take time to accept wearing whatever type of protection you think you need for that day or event. I keep and travel with pull-ups,  diapers,, booster pads, bed pads, wipes, gloves and towels. Plus change of clothes. As my needs change with diet, activities, weather.I had a choice of never leaving home on disability or try to get out and stay active to keep my ability to walk. The nursing home can wait. I have accomplished alot since my two back injuries. Like you I got hung up on thinking about the future, instead try to concentrate on what you can do or enjoy today. The future will come and we can't stop it. Doctors stopped putting limitations on me and are amazed at how well I have done. 

A good friend of mine told me it you wake up on the sunny side of the grass it's a good day. If not you don't have to worry about it.

[Rob110]

Acceptance of needing diapers gets easier over time, Remember you are not alone in needing to wear a diaper.  Taped diapers are way easier to change out of and you do not need to take your pants off to change and you will be able to get a more comfortable fit and they leak way less often hen pullups.  

 

 Taped diapers carry a stigma that can be hard to over come at first but the reality is once you find a premium diaper you can trust dealing and living with incontinence gets easier and theres no shame in needing to wear a diaper.

 

 

[Anonymous12]

Hi guys I didn’t realize that I posted this not too long ago (oops). It looks like many other adults with cerebral palsy are experiencing the same thing. Apparently, it’s something that doctors avoid telling you in order to not scare you and then when it does happen, they’re like “oh yeah, that’s totally normal” ?. 
 

I think I’m going to use pull-ups for now because both my bladder and bowel muscles are effected. It’s not total incontinence but it’s more like a small involuntary movement. I just hope I don’t need taped diapers anytime soon…