iefisherman
New member
31.... please don't judge.
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Am I the only diaper dependant cf'er?
- Thread starter iefisherman
- Start date
little debbie
New member
diaper dependent CFer
Yeah I thought I was the only one. It was a disgrace to pack your diaper. And the they weren't quiet at all too much "crinkling action" going on. I wore then till 13. Went to the dr he have me 2 weeks of theseittle blue pills. After 2 weeks I've been fine. Don't remember what was in them but miracles to happen
Yeah I thought I was the only one. It was a disgrace to pack your diaper. And the they weren't quiet at all too much "crinkling action" going on. I wore then till 13. Went to the dr he have me 2 weeks of theseittle blue pills. After 2 weeks I've been fine. Don't remember what was in them but miracles to happen
iefisherman
New member
I am almost wondering if it is related to low oxygen. I had an overnight o2 done and my doctor said it was one of the worst he has seen. I was going below 70%. I read that oxygen that low can cause nerve damage, it also caused me to have seizures and i heard that can have lasting effects.
imported_Momto2
New member
Bloggymom, yep, I'm there too. Should buy stock in Poise......
Very annoying at time.
Very annoying at time.
iefisherman
New member
O2 just at night. My day sat. is usually 92-94%
little debbie
New member
Sorry about my recent rant of a post that wasn't even on target lol. I've always had problems with bed wetting until 13 but now if I cough or laugh too hard, I'm sure glad I have a Poise pad to help with that issue. Sometimes it makes one feel old to be buying adult diapers, but it's sure better than the alternative. I've heard of many CF'ers doing this same thing. Nothing to be ashamed about! Cough, laugh and enjoy life!
I have been dealing w/ it for about a year now. Seems like O2 levels dropping makes it much worse. I was just reading that D3 levels being low may be connected to incontinence. Could sure use any suggestions other than diapers, but like you said, I guess diapers are better than the alternative.
B
BreathinSteven
Guest
I kinda wish we didn't have to say, "please don't judge" - it seems to me that wearing a "diaper" / liner / protective-undergarment / whatever should not be seen any differently than wearing oxygen, walking with a cane or crutches, or needing a wheel-chair...
I noticed a few things when I was in deeper trouble and on oxygen: sometimes when I over-extended myself and got into a situation where I was out of breath and on the verge of panic, I would start to lose control (which didn't help the whole panic situation...) The other problem was when I didn't take sufficient enzymes and ended up with very oily stools - one wrong sneeze or coughing fit and I had a pants-load - and a diaper would have been a God-send...
Whether problems with incontinence come with illness, injury or age - it sure would be nice if we could accommodate it to the best of our abilities, and with the tools readily available to us, without some level of shame or embarrassment. I know some are embarrassed about oxygen, a cannula, a mask, a cane, a wheel-chair - something that, in some way, reflects the image that we are somehow afflicted and not "normal". I wish it reflected that we are stronger than "normal" - that we have a problem, but we're still out there living life.
Love, Steve
I noticed a few things when I was in deeper trouble and on oxygen: sometimes when I over-extended myself and got into a situation where I was out of breath and on the verge of panic, I would start to lose control (which didn't help the whole panic situation...) The other problem was when I didn't take sufficient enzymes and ended up with very oily stools - one wrong sneeze or coughing fit and I had a pants-load - and a diaper would have been a God-send...
Whether problems with incontinence come with illness, injury or age - it sure would be nice if we could accommodate it to the best of our abilities, and with the tools readily available to us, without some level of shame or embarrassment. I know some are embarrassed about oxygen, a cannula, a mask, a cane, a wheel-chair - something that, in some way, reflects the image that we are somehow afflicted and not "normal". I wish it reflected that we are stronger than "normal" - that we have a problem, but we're still out there living life.
Love, Steve
I kinda wish we didn't have to say, "please don't judge" - it seems to me that wearing a "diaper" / liner / protective-undergarment / whatever should not be seen any differently than wearing oxygen, walking with a cane or crutches, or needing a wheel-chair...
I noticed a few things when I was in deeper trouble and on oxygen: sometimes when I over-extended myself and got into a situation where I was out of breath and on the verge of panic, I would start to lose control (which didn't help the whole panic situation...) The other problem was when I didn't take sufficient enzymes and ended up with very oily stools - one wrong sneeze or coughing fit and I had a pants-load - and a diaper would have been a God-send...
Whether problems with incontinence come with illness, injury or age - it sure would be nice if we could accommodate it to the best of our abilities, and with the tools readily available to us, without some level of shame or embarrassment. I know some are embarrassed about oxygen, a cannula, a mask, a cane, a wheel-chair - something that, in some way, reflects the image that we are somehow afflicted and not "normal". I wish it reflected that we are stronger than "normal" - that we have a problem, but we're still out there living life.
Love, Steve
Well said!! Sometimes we get so wrapped up in trying to be "normal" that we forget what is important, that we are able to be part of the world in which we live and to contribute something, whatever it is, to that world.
iefisherman
New member
i appreciate the support. I deal well with it, but every heathcare worker that i have told or has found out says it's rare or is just plain rude about it. I have had to do the extra laundry, and stream clean the couch. I am more comfortable wearing protection, than constantly embarassing myself. But either option is very embarassing in the hospital. I am glad a few of you understand, and it really helps.
iefisherman
New member
It's not the CF crew, its the Hospital crew that have no idea. We have all delt with them.
azdesertrat
New member
Pre-trans I would 'borrow' my Wife's panty liners on occasion.
I would get so winded at times a little pee would leak. If I had a particularly hard bout of coughing, Stuart Little would leak even more.
You want to talk about emasculating...
I was always VERY grateful I never got in a wreck in my semi on days that I had to borrow her 'supplies'.
Back then, I would get horribly winded walking the 50 ft. or so from the cab of my truck to the front axle of the trailer to open the tailgate & dump the airbags in order to unload.
Before I came up with the panty liner idea, it was always very embarrassing to be seen with a wet spot on the front of my jeans if anyone else happened to be around when such an incident occurred.
Then, of course, after it dried, I had the smell to contend with.
Not fun.
Jeez, this has been so embarrassing to admit.
I'm so glad those days are over with.
Don't feel bad, you're not alone.
I would get so winded at times a little pee would leak. If I had a particularly hard bout of coughing, Stuart Little would leak even more.
You want to talk about emasculating...
I was always VERY grateful I never got in a wreck in my semi on days that I had to borrow her 'supplies'.
Back then, I would get horribly winded walking the 50 ft. or so from the cab of my truck to the front axle of the trailer to open the tailgate & dump the airbags in order to unload.
Before I came up with the panty liner idea, it was always very embarrassing to be seen with a wet spot on the front of my jeans if anyone else happened to be around when such an incident occurred.
Then, of course, after it dried, I had the smell to contend with.
Not fun.
Jeez, this has been so embarrassing to admit.
I'm so glad those days are over with.
Don't feel bad, you're not alone.
P
patriajase
Guest
I never had to face any issue like yours. But I can understand. You'd better not feel bad about wearing cloth diapers as this is the problem you have and you're not to be blamed for it. I hope your issues will get back to normal soon. Just hang in there!