Support for dealing with incontinence
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PostPosted: Thu Oct 22, 2015 9:12 pm 

Joined: Thu Oct 22, 2015 3:25 pm
Posts: 3
Hi everyone, my name is ZP (or whatever you want to call me). I was about to go into the (extensive) details of my medical history, but remembering that this is a forum dedicated to incontinence, I’ll just give you a summary for now, and explain how it ties in with the subject of this forum. Basically: I have a terrible immune system. The rest of my family being fairly physical or athletic, they’ve never given up encouraging and supporting me in getting out of the house and breathing fresh air. Against what was projected, I was able to attend grade school for almost 75% of my k-12 education.

I’m pretty sure I could have qualified for a decent college and was ready to do so, but not only has my family possessed very empty pockets in the last two years (myself being second or third biggest reason, so there’s no way I’m going to expect my parents to make their debt even steeper), but I’d gotten considerably worse since the tail-end of the 11th grade. I was in a wheelchair for the rest of the year, the pain was the *the worst* it had been before or since, and I had become *mostly* incontinent around that time, and haven’t recovered much since. In this state, a campus lifestyle hasn’t been an option.

I’ve had difficulties with control since forever, so I’ve been very familiar with what kind of change that makes to one’s lifestyle (especially when bedridden), but now I’ve been stuck with it since the end of highschool; and now I’m 21. I’ve been taking on various jobs and occupations online, and I’ve been able to make enough money to soften some of the financial drain I put on my family. I’ve been doing really well this year; my current short-term goal is to break even with my medical expenses + health insurance. But I’ve only been getting lonelier in that time; being at the house for a few years now.

So that’s what brings me to this forum. I’ve been emphatically participating in medical/disability communities lately, and I’ve been getting weary of how big of a distance incontinence puts between me and many of the other people in those forums. It’s one of those things like deafness, in that it’s *such* a major alteration to your lifestyle, that there’s going to be an odd disconnect if only one person does it. I mean almost all of the incontinents I’ve met have also had spinal-cord injuries, and paralysis is an *even bigger* lifestyle variable, so I kept having the same problem. Incontinence is either my second or third biggest personal medical concern right now, but it was fourth or fifth for the quads/paraplegics I’ve talked to.

Even though I assume most people are here for spinal issues, spina bifida or cerebral palsy, it also seems like *the reason you’re all here* is because incontinence is something you’re willing to talk about in-depth. I’ve never seen anything even half as detailed and thorough as the guides on this site, so I’ve been hoping that I’ve finally encountered a community hell-bent on making incontinence as un-unpleasant as possible like I am!

PostPosted: Fri Oct 23, 2015 7:03 pm 

Joined: Sat Sep 05, 2015 7:51 pm
Posts: 782
Location: Hampton Roads, Virginia
Welcome ZP!!

When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

PostPosted: Fri Oct 23, 2015 9:40 pm 
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Joined: Mon Jun 30, 2008 12:33 pm
Posts: 1279
Location: MI

Not all of us here have cerebral palsy, MS, spina bifida, or spinal cord injury. I don't have any of those diagnoses, yet i deal with moderate to heavy urinary incontinence daily. I have a neurgenic bladder of the underactive variety. My mobility is not affected at all. I do have otehr issues besides the incontinence such as ADHD and PDD-nos. Whetehr they are contributing factors is anyone's guess. I think it is, because ADHD medicaitons tend to be constipating.. and constipation can cause overflow incontience.. for both bladder and bowel. I don't get down because of my incontinence, ive accepted it and moved on.. Ive been dealing with it in its current form and resurgence for a year. Ive been throug the gauntlet of urodynamics, mri, flurourodynamics, cytoscopies (those HURT!), and have tired to get dry with medicaiton, and biofeeback. Nothing has proved permanent in terms of long lasting dryness. The biorfeedback/pelvic relaxaiton therapy i under ewnt in 2009 got me about 4 years worth of dryness.. then i started wetting in 2014.. i underwent it again, and was dry for 2 monts.. then started wetting agian.. so, at this point, ive pretty much come to terms with living with incontinence. I dont really expect to get out of diapers again, unless some new radical thing comes along that i dont know about..and im ok with that. The biggest downside is the extra expense with diapers, which im hoping to mitigate. I have considered all managemnt options, including external catheters, clamps, timed toileting, etc, and for the moment, have come to the conclusinon that diapers are the management tool for me.

Peace out!


"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

PostPosted: Sat Oct 24, 2015 1:40 pm 

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1413

Welcome to our leaky site. Immune system disorders must be the pits. I hope that someday medical science will understand enough about the immune system to enable you to enjoy a more normal, and less isolated and costly, life. Everyone here has a story to tell, and many of us have several, not all of them humorous.

Read the Primer; join in the conversation, and let us know how we can assist you.

PostPosted: Thu Oct 29, 2015 11:20 am 

Joined: Sat May 03, 2014 8:08 pm
Posts: 480
Location: York, Maine
Welcome aboard, ZP!!
Sorry to hear of your issues, it sounds like a nearly insurmountable struggle for you everyday. Everybody here deals with incontinence and/or bladder issues of some sort. We all manage our issues in the ways that work best for our individual needs. Some of us have co-existing medical issues, and some of us believe it or not are otherwise completely healthy despite a leaky or hypersensitive bladder. I have overactive bladder/hypersensitive bladder/interstitial cystitis. I have extreme urinary frequency, urgency, weak stream, and hesitation. I always make the toilet, but leak for 15-20 minutes afterward, usually until the next time I feel like I have to go to the bathroom. So while the leakage isn't super heavy, it's always there. I'm wearing pullups and pads at work and regular diapers at home. I'm also a Foley catheter user due to the extreme urinary frequency has made it difficult to love outside the bathroom, sleep at night, or ride in a car for more than 45 minutes. This is my only physical health issue and I work full time +. I have several part time jobs and still lead an active lifestyle.

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