www.incontinentsupport.org

Well, where does one start? After 15+ years of battling bladder incontinence issues, I have decided to register on a website instead of just reading and lurking in the shadows… I will try to keep this short!

I am now 43, M, single and not sexually active, and have had bladder urgency issues since 1995. Started the night of an MVA rear-ended of which I was the recipient of, although not by my choice!
Had no fluids onboard for the previous 2+ hours, and wet my pants a fair bit while on the stretcher in the E.R. before I got formally introduced to the urinal No broken bones, but the impact of the crash was rather nasty, enough to knock me out for 5-10 seconds. I was off work for 11 months doing all the rehab crap that follows accidents. Physio, massage, more chiropractic then you could imagine, gym, pool therapy and specialists. All I wanted was to return to my former self, if that was even possible. I immediately noticed in the following days after the MVA that when I had to go, I REALLY had to go, and that was new. About one month after the accident, I had a nighttime wetting incident where my entire bladder just decided to bust out of its holding pattern while I was sleeping, and I awoke to a rather shocking lot of wet underwear and sheets, (waterbed thankfully!) I told my then doctor about what happened and he made a comment about being too old to start wetting the bed to me that TOTALLY shut me down to talking to anyone about it. I was horrified about that comment for a long time, in fact I still am disgusted with him to this day, but he since moved and I have a new doctor. I quickly became aware I had to cut off fluids at least 2 hours before appointments, which there were many. The nighttime incidents were very spread out in the following years, maybe 2 or 3 times a year, but with no obvious reason for them.

In the following months I had several occasions where I had daytime wetting accidents while out in public, once that left a full shopping cart in the middle of the grocery store, and me on the way home to change, un-noticed thanks to a pair of long johns and a longer winter jacket, but still totally humiliating to say the least, even if nobody did see the wet pants (that I noticed in my hurried exit). At this point I knew something had to give, but still took a while to finally step into the “Bladder Control” section at the not so local pharmacy. I have grown up in the place I currently live and know MANY people, so I travelled 30 minutes to the next best place to go where I would not be noticed. I knew of the absorbant products on the market from TV ads, (Depends & Attends) and have always made jokes about “that problem” unknowing it was coming for me in the not so distant future! Just to go into that isle took me 10 minutes or more, but I grabbed a bag of Depends Fitted Briefs (OK let’s face it, they are diapers everyone!) made sure it was a Medium, and bolted for the till… praying there was no line up or a younger cashier to deal with, thankfully I didn’t encounter either!
The following months were a learning experience to put it lightly, as the daytime urgency limited what and where I go to unless it is a “safe place” where I know the bathroom situation. I discovered that just a brief alone doesn’t always do it when you are losing your entire bladder (300-350 mls), so more researching and reading came to liners/stuffers and plastic pants. At nearly 30, I still had a hard time accepting diapers, so after talking to a continence nurse on the phone, and later face to face, I discovered the external catheter system. For someone who has no idea about this stuff, let me tell you, I would have never know. That system gave me my life back without a diaper, and I was thrilled to put it mildly. That became my primary avenue of coping for several years, as it was without any problems (until latex and my skin became not so friendly towards each other) I was dry and it has no odor if maintained properly. Problem was it is now the cheapest route to go, so I have since been using both, depending on the situation at hand. The nurse I talked to also did some Urodynamic testing at a local clinic, but didn’t show anything except some spasms when I was filled up, and had to go right away, as well as a not so large capicity. She was kind of shocked when I told her I was using a diaper for nights and leaving the house, most likely because I was still very young at 30 and looked active and healthy. I am thankful to her for giving me info on the external system.

I finally spoke to my new doctor about this in August 15 years after this all started. I had just returned from holidays, and had been using the external catheter system daily for two weeks. I told him I had been avoiding this topic for many years, and finally just came out and said it… When I have to go, I HAVE TO GO! Like, right now or there is going to be a problem Captain. I am sure I had a terrified look on my face, and tried to joke about it with him, but when he asked why so long in talking to anyone and I told him about the comment, he TOTALLY understood my reason for keeping it hushed up and to myself for so long. He replied with something like” wet your pants problem” and I said YES… finally off my chest, what a relief!!! I told him I had been on the external system for several years, and it gave me my life back as far as being limited as to where/when/how long you are out for and where the bathrooms are. I was kind of floored that he didn’t object to the use of it, but the options available are not that many, especially for someone like me (or so I thought). I have not had any negative issues with it as far as UTI's, only the latex reaction, but going to silicone solved that problem immediately, as well as staying on far better then the latex types.

Off to the Urologist for a Cystoscope and Urodynamic test last month, both of which I dreaded, but where not nearly the big deal I thought they would be, just embarrassing but tolerable. I wore a pull-up to both procedures, but had it tucked away under my clothes. He didn’t really get into how I deal with all this, and I never felt comfortable enough with him to want to discuss it. I have since had an Ultrasound where they discovered a hernia (inguinal sp?) but I and my doctor doubt that is casing the problems. The next topic of discussion is Medical benefits, as I will most likely need a doctor’s note explaining all this to try and get my extended medical benefits to cover some of the costs, and we all know, this stuff is not cheap! I don’t see it listed on their website, although Ostomy supplies are, so what gives? He is aware of the external cath useage, but I don’t think he knows I am using a diaper when needed. He had no problem with the first one, and I told him I am using protection during the day if I needed to, so I am sure he knows, he just has not broached the subject.
So, after all this time, only my very best friend who I would tell anything to knows about it, as well as the doctors and Urology Nurse at the local Pharmacy where I buy my supplies at. Family has not clued in, although I think they have their suspicions, as they know I go WAY more often than normal, unless I have the catheter system on, and that in itself is nerve-wracking enough to think about being found out on… I really doubt with all I have been through in the last 15+ years they would even bat an eye at it, it your bladder acts up and this is how you manage it, BIG DEAL… still not going to be an easy conversation I know already… cross that bridge when it arrives for now.
THANKS for letting me vent a bit, and tell my story/situation, this has been a nightmare to live trough by myself to put it lightly… I have had more than my share of dark days, as I know anyone dealing with medical issues has, but the future looks brighter all the time! I just think…this whole thing could be SO much worse for me, I am still able to walk and work, and do my activities I enjoy, so big deal if they involve needing a diaper/pull-up or external catheter to be able to do… I am over it!

Sorry for the long winded post, but it is all kinda complicated and has been drawn out for what seems like forever! I hope to be support for anyone having difficulties with incontinence, as I have been there, done that!
Puffy Pants (not that anyone has noticed yet! )

Hi Puffy Pants,
welcome!

I truely dont think some doctors 'get' just how devistating this condition is when the first 'accident' happens. I remember the first time i wet the bed after a fall at work where i strained my back, i truely thought that i had spilled a bottle of water in the bed and spent half an hour trying to find where the heck the bottle had gotten too! it is only when i smelt the wetness of the bed i thought.. uh oh this isnt water! I so embarressed i was blushing a deep red, at tis time i was 20 or 21 and was wondering how the hell i was going to get the bed clothes washed without my parents asking questions.

i succeeded in hiding this problem for over two years while i tried to find a way of 'fixing' the problem. Unsuccessfully!

and like you when i told the first doctor about the problem he said 'oh! thats very embarressing isnt it?' i got the hell away from that a$$ quickly as i could! so in regard to that, as much as we need the doctors, boy they can sometimes be ignorent assholes!

being in ireland i didnt have access to bladder control products, the chemist and phamecys dont carry them like they do in the states, and it took almost a year and half to find a source for diapers here, so that was embarressment after embarressment asking diffierent chemist 'do you sell incontinence products' and they were`like 'eh?'
so i am glad that you did have at least access to products.

i think for everyone this condition starts off as a 'nightmare' when the problems first start, and i think everyone feels the same horror, and disgust and worry of being found out as what you describe, i know i did! but you are right,and again i am glad that you seem to have reached a form of acceptence with the condition, which is very difficult to do! so well done with that.

i think once there is a realisation that you can still have an active life, the road ahead looks a bit brighter.

Mike

Thanks for the welcome Mike... it was definately a while to come to terms with it, but as I see f now, sure I have to manage fluids very carefully, and know my schedule, which for me to begin with is critical as I like to have everything planned out in advance. I have heard about some docs making totally unprofessional comments in regards to patient illness or situation, and for me to this day I still have a nasty tought about that doctor time and again... but he is long gone from my medical situation, and the new one is like night and day, thankfully. We have not gotten into the finer details like I said, but he has seen it all, and knows what I need to do to keep things in control.
The not having access to product over there must be difficult, or has it improved since those first days trying to locate some. I know from poking around online there are several sitees that sell to mainly the Europe region, and have quite a bit of products. Having internet access and a credit card has opened up access to things I would never had the chance to get my hands on. In Canada there is a decent variety, but nothing high end like Molicare/Abena, Tena Supers is about the thickest available. I am looking at the Prevail PM brand if I have any success with insurance, but I have not seen them in my immediate area. Have a link to Abenas from Vancouver, so just waiting on that right now.
With your back strain, did it get better, or was there things that just never improved. I know, backs are a bitch to deal with when you injure them for sure. I am jsut glad I still am physically active, and can do "stuff" as I see people daily that have it tougher then I ever will. Count your blessings is what I have to remember. Thanks for the reply, Puff

Welcome to the forum. There are some really nice people here, and a lot of good information available. I've only been involved a few months, as my incontinence issues have been going on less than a year. I have a constant drip, which at its worst can make a wet spot on the outside of my pants, and really do a number in the bed. The last few months the dripping has been fairly light, and I usually go out with no protection at all, unless I'm going to be gone several hours in which case I wear pull-ups.

For a while last summer, it was so light I actually moved all my supplies upstairs to a closet and just slept in my underwear, until about a month later I woke up in a large puddle. Three days later I wet the bed again and the wife said, back in the didies, Daddy.

Like you, I have frequency but don't really have urgency, at least not sudden urgency. But when I have to go, I have to go. It's funny how it happens. I don't have to go so bad I can't hold it, I have to go and I don't hold it. I'm aware of the need to pee and I think I'm holding it just fine and have plenty of time, and the next thing I know it's running down my legs. I've been able to keep accidents down to once every three or so months by making sure I go as soon as I feel the urge.

A couple of thing I'd like to say. First, don't dehydrate yourself in an effort to keep volume down. Your urine should be almost clear, just about the color of lemon juice. If it's bright yellow, you aren't drinking enough water. Better to use a couple extra diapers per week and stay healthy. Besides, if your urine is clear the smell is much lighter and it's much less likely to irritate your skin.

Second, don't keep anything from your doctor. They can't help if you aren't up front with exactly what's happening. I was diagnosed with OAB and given Vesicare. I took it for three days and quit. I was constipated, and felt like I was on a bad drug trip, all nervous, jittery and anxious. I'm an avid cyclist, and found it had a bad effect on my biking. I was going slower an felt exhausted, and couldn't help but wonder what my heart was doing with the extra effort (I have five cardiac stents). Worst of all, it didn't stop the dripping, but it did reduce the frequency. It wasn't worth it.

The main thing is to maintain your self esteem and continue to live life normally. I'll be 61 in a week, and it's probably easier for someone my age not to give a damn what people think. Keep doing what you used to do. I wear black biking shorts, so the inevitable wetness is almost impossible to see. In the winter I wear a pullup underneath my warm up pants (black pants, just in case).

Anyway, nice to see a new face. Stick around a while.

_________________
Fred

Hello Fred, thanks for the introduction. I am finding quite a bit of info on here, and LOTS of good tips and ideas. It sounds like you have your issue well in hand, and a supportve wife who is not bothered by it must be great to have. I look at what I face, and have doubts that I will ever meet someone who would not be bothered by it, thus the main reason I don't bother dating, it is just an issue I took so long to adapt to, how could anyone else want to be involved in it. The continence nurse I talked to about that told me if you meet someone who is serious enough, what is going on under your pants will not even be an issue to them, I hope she is right.

I keep a handle on the fluids when at work, limiting to a cup of coffee between 7-11 in the morning, and whatever at lunch, trying to avoid pop as it is an irritant to begin with, the coffee I won't give up! A steady schedule really helps as well. When I get home I always drink a ton, mostly Cran juice, and make up for it there. My doc has been great, except for sending me to the Urologist, which I really wanted to avoid but knew it was crucial to do, and I survived it all anyhow. He told me meds were an option, but as you said and I have read everywhere else, the side effects are just not worth it. I may try and see if I have the same things happen before I shoot the whole idea off the table. Thanks for the intro again, I will be here a while, I just have that feeling! Puff

Puffy,
Finding a understanding, yet knowledgable doctor is a must with all health i think. I myself found one after i ditched the first one.

The ability to find products here hasnt really improved at all, for some reason, the irish are so phobic about their population needing adult diapers and pad, tubs cathiters etc. when i went to america in '98 i almost dropped out my standing when i saw long aisles in stores dedicated to incontinence control products, i just couldnt believe how 'open' people were there.

Thankfully i did find out that i was able to get help through the health board here, and now i get a set amount of nappies per month, i'm allowed five a day, which for the most part is plenty. and again, thankfully, the nappies i am allowed are of a very decent quality, i used medium, super plus absorbency, euronform, which the incontinence advisors recommened for me after i was assessd.
so after going through horrible times with terrible products which either leaked like niagra falls had been diverted to flow from between my legs or they just didnt work, i finally ended up with somethig that actually works... most of the time!

my back did heal, as good as a back can heal after it is hurt, it is still wek though. i say that when my back got hurt at work as the cause of the incon, i cant be 100% sure that it was, just so happened that i started having occassional wetting accidents after the injury.
i do have periphial neuropathy, which now affects about 80% of my body, so the sensation loss is pretty severe, so amoungst other things i have no sensation feed back from the bowel or bladder department. i started having nerve problems in my teens, so the incon could have been from that progressing either, who knows
all i know is, after feeling so bad with the incon for so many years, i realize that strangely as it may sound, it isnt the worst of the problems i have!
it is one of the things that i can dealwith

you're right, the internet and a credit card make things easier these days, problem is.. i dont have a credit card! I truely couldnt trust myself with a credit card the internet is FULL of great toys!! so i would be in deep with the credit card company in no time! and thats the last person i want knocking at my door with a baseball bat to break my knee caps

Mike

Hi Mike

I have Peripheral Neuropathy as a result of diabetes. That causes pain mostly in my feet, legs and hands. I also believe that I have autonomic neuropathy which affects my bladder and bowel control issues as well as some digestive issues. I recently discovered a new term, Focal Neuropathy, which can affect eyes, nose, swallowing, and abdominal areas, which I also seem to have (I've had the condition for years, just didn't know what it was called). This all rolls up under the general area of Diabetic Neuropathy. So far, I have a fairly mild form of each, but I believe it gets progressively worse over time, I know the pain has gotten worse. If you haven't seen a neurologist specialist, you might want to look into that. My neurologist hasn't found definitive proof that my incontinence is caused by some form of neuropathy, but he feels confident that it is the likely main reason, but there isn't much that can be done if he had the proof or not, so I just live with it. He monitors my various nerves (conduction tests) so he can see if things get worse over time, but I'm taking a pile of pills to help the pain, but otherwise, nothing will fix the nerves.

Hi Dangoch

You are right, incontinence is mostly, (but not always) a sign of something else going on as well, or it is caused by something that is 'lurking'

I have sjogrens syndrome which was diagnosed in 2000, sjogrens mainly affects the moisture producing glands in the body, which leads to dry eyes and dry mouth, though it can have arthritis and periphial nueropathy as secondary illnesses as well because of the fact it damages the moisture producing glands. with the nerves, it damages the mylar coating which covers the nerves and causes them over time to become damaged.

i started off with what they term as 'stockings and gloves' neuropathy, though over time i notice it spread up my legs,by the time 2006 came i had lost 90% of the feelin in my lower legs, and i had lost total control of my bladder and some loss of bowel control as well.

in 2006 i needed to have a liver transplant, i have a genetic condition called Alpha 1 anti trypcin defiencey, so in novemeber 2006 i had my transplant, and immediately afterwards i was given a large infusion of an anti-rejection medication call 'prograff / tracimalis', and i had a MAJOR reaction to that particular med. the reaction to this med, sent my body into what i was told was 'neuro-toxic shock' and my nerves started to shut down. by the end of the third day after transplnt, i coudnt stand up, and my voice had started to fade, my finemotor movement in the hands had gone as well, i couldntfeed myself of do anything that required 'grip'. and it got worse, a few days later, i had lost all sense of touch, taste, voice was completely gone, i could only move my left arm, my legs were gone i couldnt move them at all, of course the bowel and bladder had gone totaly as well, my body was 100% numb!
anyway trying to make a long story shorter..
they ended up changing the medication to a different anti rejection med calld ciclosporin, and i recived I G infusions over the next few days, and then i started to notice more movement in my arms, and few days later my legs could be moved, though it was almost five and half weeks befoe i was able to stand up assisted by four people, my voice startd to come back, but i had to relearn how to place my tongue for the sounds that make up words, essentially i had to relearn how to speak, and how to walk.
i have 20% feeling back in my body, butmost if my body is still numb, i have to do everything with concentrion so i can control movement, but i am thankful that i CAN do things!
bladder and bowel control / sensation never came back, its a case of ... well i am like a small child in the toilet control department no control whatsoever..

I do see a neurologist on a regular basis,though since the transplant there is a heck of a lot of meds that i cannot take, which makes treatment difficult, as if it werent difficult enough right?

i have had the urodynamics done so many times i have lost count, the only thing that tests does is it finds 'nothng wrong' but gives me a bladder infection that takes almost three sets of antibiotics to get rid of.
i have had the cystoscopy test done, you know the camera crew crawling up your penis.. about 5 times as well over the year as, the end result, the same as urodynamics..

i was offered a set of proceedures by the urologist, either i could I.C, (got infections, Foley cathiter (got infections) supra pubic cathiter (no way! besides i would still have to wear diapers for the bowel contition) i was offered a technique which involved surgery toplace an artificial sphincter at the base of the scrotum and when i needed to void i would open the valve and then close it after.. upon due consideration (2.5 seconds) i said no way, a) i have no sensation in my hands, i have to be able to see what i am touching to know it exists and to get my hands to work, and there aint no way i am flexable enough to get my head between my legs! b) it invovled surgery, c) it would have to replaced once a year which would involve surgery, d) infections, e) i would still need to wear diapers!!

so i considered everything, and diapers is how i decided to manage my incontinence issues. it seemed like everything would still leave me in diapers because of the bowel issues as well, so i applied for a highe rate of absorbecy in the diapers and voila! here i am..

sorry for the long answer for a short and very helpful suggestion
but i do feel like i have tried everything out there at the moment..
so the best way to continue is 'acceptence' as much as i can anyway:)

Mike

Wow Mike, that is one nasty story. I'm sorry that you had so many problems. Makes my situation seem small and simple. I've had incontinence issues for over 30 years. I too have had the various urodynamics tests several times over that period, most recently two years ago. Each time, nothing abnormal is found. I kept telling the urologist that my bladder randomly decides to dance around my lower abdomen, sometimes resulting in a flooded diaper, other times it just feels like dancing. It is very weird. But when I need to go, I get about 15 seconds warning before I begin voiding. I get no feeling of fullness. But then there are periods of time that my bladder doesn't feel like dancing and any urges are relatively easy to keep in check. I still get no feeling of fullness but planned voiding seems to keep things contained. Tell me how a urodynamic test will find that problem? So I try to manage this mess as best I can within the parameters of minimizing accidents and embarrassment but keeping diapers close by when the bladder begins dancing. These periods last days, weeks and sometimes months, which drives me crazy at times. Sometimes I think it would be easier to just wear diapers 24/7, which I have done for a few years but my neurologist convinced me to try neurontin which seemed to help somewhat. The drug is intended to relieve the shooting pains in my legs but along with that, it blocked calls to dancing with the stars for bladders. If that worked 100% I'd be one happy camper but unfortunately, no such luck. Now I randomly get emergency urges and wet beds. I could be constantly diapered but that would be a waste of landfill and money. I've tried the typical drugs to prevent leaky pipes, but they don't work on me and the side effects are awful. So I live day to day in fear that I will have a public accident, but I'm relieved of wearing diapers 100%. But when another period happens, I revert back to protection again. My urologist and neurologist scratch their heads and I try to keep sane. I'm relieved that some improvement has happened several years ago now, but that is not anywhere near "normal".

Hi Dangoch,
The drugs truely are horrific aren't they? I have yet to meet 'anyone' who has anything good to say, or even anything 'positive' to say about these medications!

Before my transplant i took Neurotin, hmmmm for about a week and a half, it was suggested by the first neurologist that i attended, he said it woud help with the nerve pain, which at times is crazy! it did nothing for me, the only thing tht happened was i started to have these uncontrollable shakes, bad enough that i could'nt drive, and it triggered horrendous migranes as well, so i didnt notice any good from it, too busy trying to deal with the bad side of things. but i find thats the way with a whole lot of meds out there, they say 'we'll cure this, but it might give you something worse!'

i had the same things with the uroligists, i mean they said, i have no cysts or tumors in the bladder and my prostate is healthy, and thats all they say. good news ofcourse, that there isnt anything going on in there, but fustrating about the, 'ok see you next week' thing, but no offer of help that doesnt involve surgery.

I am always very guilty about the landfill issue..
if a baby uses 5,000 nappies in their life between birth and potty training, all of which go to landfill, and therefore contribute to the problems of the planet, i shudder to think about the amount of nappies sent to landfill from me, i use five a day on average.. something i dont think about too often. want to save the planet, but i want to save my embarressment at the same time!

so a rock and a hard place!

Mike