www.incontinentsupport.org

Hi,

I still wonder what exactly is going on with my bladder.. is it the sphincter, is it the pelvic floor, is it the detrusor spasming? I do feel urges to pee, and hten hold back.. and then.. all of a sudden i let go... is it just weak pelvic muscles? Well, if it were, would that explain a sudden reoccurance of incontience? If the pelvic floor got weakend due to not doing my excersices.. wouldint i gradually see more and more leakage?? and that also does not explain me staying dry for 4 years, because im pretty sure i didn't do the pelvic excercies with any regularity once i became dry for a while.. I might have done a set or two to fully relax the bladder sometimes, but nothing major. It does seem that if im constipated.. i do tend to leak small amounts and it goes away when i up my fiber intake... but i didnt flood like i do now..

If it was neurological, wouldnt it be consistent? well, my urologist did say that neurgenic bladder can respond to biorfeeedback.


Eh.. i don't know.. i just dont know anymore... I do seem to remember sporadic wetting and bedwetting when i was a kid..

Maybe it's genetic? I do have a chromosome reversed..could that do something? could it be the PDD-nos? i do know i have a sensory processing disorder..as well as issues with poor fine motor control.my handwriting is illegible.

All i know is,,ive gotteb comfortable with wearing diapers..and while i don't like the idea of wearing them for good..I also don't like the idea of having off and on episodes..going back and forth betwen continence and incontinence for the rest of my life either.. because its like a tease.. youre dry some of hte time..weeks, months years..but not all the time....sometimes you still leak.. we can't cure it, but we can treat it so it doesnt show up for a few years.... eh..

Ive been tempted to set a date agian after which i would no longer pursue treatment or anything else..just use diapers..no more how or why..just living with it..and that date happens to be Jan 1.. That doesn't mean i want to be incontinent, and live with this for the rest of my life.. but setting a date gives me a chance to figure out if biofeedback works or not, and such.. I thought to myself, maybe as a last resort. id ask my urologist to refer me to the PT agian..but we both thought htat that wasnt necessary because i had the info o nthe excerecises..
Heres my dilemma.. if being dry lifelong with no diapers whatsoever is dependent on remembering to do the excecises every day.. that might not be realistic with my ADHD and pdd...also, distracting myself when my bladder is full won't work if im teaching a class..

Sorry, im rambiling.. on the one hand.. i just want to give in and be done with treatements and just live diapered.. but on the other hand... parat of me wants to see if i can get dry again.. there are pros and cons to both..

Peace out!

Rob

_________________
"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

Rob, you must be very frustrated and concerned. I am only a layman, but have learned that pelvic floor issues can be incredibly complex to diagnose and it may be nearly impossible to isolate single instances of cause and effect as so many things are interconnected. In my case, pelvic trauma from an old rock climbing accident, age, and more recent spinal problems all combined together to make me both bladder and bowel incontinent. Mysteriously the bladder incontinence has almost gone away (but not entirely) since the back surgery and I remain mostly just bowel incontinent.

Medical diagnosis and treatment of a health problem does not ensure that it will be easy to live with it afterward. That is where diapers come in. I refused to have an electro-stimulator surgically implanted to help my bowel problems because of reliability issues and the lack of guaranteed success. I decided that, for me, the best choice was not to risk the surgery and instead to live wearing diapers. Of course, during this same time period I was experimenting with enemas as a preventive and attaining higher rates of continence than the surgeons were promising me!

Where the messages in the archives of this group helped me the most was in offering suggestions about how to live with my problem, based not on doctors, but on successes of others sharing the same set of problems!

--John

To repeat what JD said: Pelvic floor issues are rarely simple cause-and-effect. Most frequently, we must deal with a long list of causes and influences, some of them so distant from the effect (incontinence) that we must deal with that they do not occur to us, even though they are real. The complexity alone makes a solution difficult. I have Marfan syndrome, a genetic disease. I have a really mild case, but it affects every cell in my body, sometimes causing positively weird symptoms. When Marfan syndrome is stronger, it can cause serious heart disease, a simple cause-and-effect; but more often, Marfan merely irritates nerves, causing an otherwise unexplainable weird tingling and occasional spasms of various body parts.

John and Patrick,

Thank you for your kind words.. John, im less frustrated and concerned than I was in May.. you would not want to be around me when i had one of my hissy fits in May.. it was so bad that my neighbor across the hall at 3 in the morning opend her door and said "What's your problem??" but after a while i just got used to living with incontiennce again. The main thing that really annoyed me was the diaper rash..and the rash ALWAYS occurs in the same spot.. my left testicle.. I spoke to another incontinent individual.. and he gets it there too.. this must be a commnon place for men to get bad rashes... other than diaper rash and emotional downers..there ain't side effects to diapers like there are with meds.. I took my mybetriq yeterday wtihout water and almost immediately had an adverse reaction.. at first i thought I might have overdosed, but no, i counted out the pills i had taken..and it perfectly matched the days since my last urology appointment... so, eh...

It will be interesting to see what my urologist says at our next appointment.. she did say that surgery problably wouldht help. I honestly don't know if it would be worth the risk.... stuff like interstim works for some folks, but like anything else, its a stopgap measure... it reduces the episodes in some, but doesnt erase them.. I did my research on the biofeedback too.. and it looks like even with that.. it did not result in 100% of individuals achieving continence... but it did occur to me.. if I'm on ritalin, and ritalin causes me to be constipated, and hte constipation causes urinary urgencey and incon..aren't we fighting a losing battle with the diet and biofeedback and such? And, going off ritalin is NOT an option..the best thing for me would be to switch to another med that doesnt cause constipation..

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

Hi Rob,

I feel you on your frustration and though I have not had the successes you had for 4 years, I am weighing the same thoughts in my head. Costs, risks, efficacy, etc. I am sure knowing exactly what is causing it would bring at least some level of closure to you even if it meant still not being able to do anything about it. I pray you do find those answers and perhaps a plan of action. I agree with your line of cause and affect timeline for you. It doesn't add up or make sense, which much be very frustrating.

What frustrates me the most is how sure i was that we found the cause and found the cure that would get me dry for GOOD, not just for a year or two.. but GOOD.. no more diapers, EVER. I'm no longer taking the catapres.. so it's not causing retention.. so there goes that whole theory.. biofeedback helped.. and i did what i could with it..but it didnt last! In BOTH cases, the treatment was effective but temporary! Yes, it lasted for 4 years..but it wasn't permanent! The urologist said, oh well if it stops it for a month it must work for you...uh.. NO..the only thing that "works" for me.. is I'm completley and 100% continent for the rest of my life.. well, until the age where incontience is common... If they can't give me that..then what's the difference if i wear diapers all the time versus off and on? I don't see any...

_________________
"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

I quite agree! There's no really useful halfway house between being dry all the time and wet all the time. It's better, if symptoms come and go to be safe rather than sorry and settle for protection. Best to just relax and get on with life. Urologists seem only able to help a bit (rather like neurologists and MS!).

Rob, yes, the scrotum is a common place for men to get a rash. I do not recall whether you have mentioned using a barrier cream. For me a good barrier cream has been very effective in preventing pre-rash irritation or outright rashes. However, you have to go to the trouble of coating the penis and testicles, not just your bottom.

I have come to use a good barrier cream containing zinc oxide once a day while wearing a plastic-backed diaper, usually during my most active time of the day when I am likely to go out of the house. Also, at least once a day I wear a breathable diaper and use powder but not a barrier cream to allow things time to air out. This usually is when I am staying at home.

As I am bowel incontinent, I use a barrier cream with 40% zinc oxide. For bladder incontinence I think most ordinary barrier creams with about 11% zinc oxide would suffice. Perhaps some others would care to comment on this?

--John

The problems I have are lifelong other than being a slave to the loo which I refuse to be I have now resigned myself to wearing diapers 24/7. This is probably going to sound a bit weird however due to the DL/AB community cool stuff is now being produced such as onesies and patterned plastic pants. I have purchased some of these items so if I am feeling a bit down it gives me a lift. I hope that you do find a cure the in the mean time you are in my thoughts.

Greenbank

Fun? I'm sorry, but I find nothing fun about dropping a stinky BM in my diaper in the middle of a public store and hoping no one smells it before I can get out of the area. The only positive thing I can say about my diapers is the security they offer. Wearing diapers is no fun but it would be worse dropping a load without a diaper on. Trust me, before I accepted my need to wear diapers I had the joy of experiencing this humiliation. It was the final straw that forced me confront my bowel incontinence and start wearing diapers. The best thing I can say about diapers, is the secure feeling I have from wearing them. They allow me to retain some dignity. I agree with what others have said about possible treatments. Unless my doctor can guarantee 100% cure, I'll never go undiapered again. I have no wish to experiance another public accident without a diaper. That's the best thing I can say about my diapers, they offer security without the side effects of drugs or surgery.