Curious About Your Experience Over The Years . . .

[turtlepins]

I remember the frustration with various urologists and family doctors insisting that I should be able to regain control of my bladder. So did my parents, and every morning I got the standard lecture that if I would just try I could stop wearing diapers all the time like a little baby. Just recently I ran into it again. I've been incontinent for 48 years and a doctor suggested I try to regain control. Really? Yes! Did it bother me this time? No. But I did lecture the doctor on the insensitivity of such comments and my experiences when I was much younger. One question really flustered him. I asked him how many of his patients ever actually regained control. His answer, after several attempts to avoid the question. None! He'd heard of successes, but never had any of his patients experience that success. When I asked him if it was better to frustrate, wound, and belittle patients because he thought they should be able to do something, or better to encourage, understand, and accept a disability he told me he'd think about it. How did you deal with it?

[WetDad]

Well said TP! My GP is a friend as well- we share a common history. Yet he keeps trying to "convert" me about my diaper needs. I should try a more gentle version of this on him and see what happens.

[Little BabyDoll Christine]

Why not just ask him/her "How" then say "Been there, done that, got the no-fix"

[notababy]

One question really flustered him. I asked him how many of his patients ever actually regained control. His answer, after several attempts to avoid the question. None! He'd heard of successes, but never had any of his patients experience that success. When I asked him if it was better to frustrate, wound, and belittle patients because he thought they should be able to do something, or better to encourage, understand, and accept a disability he told me he'd think about it.

Fantasic approach! This gets past the "something to treat" mentality and back to the "someone to help" approach. VERY well said!

[doey]

I have dealt with the same type of doctors and urologists over the past 18 years, only mine are through the Tricare Prime (Military Retiree's/Active Duty Dependants) and through the Navy Hospitals. The Tricare Network's own handbook when discussing incontinence speaks in one chapter of all the incontinence products for controlling incontinence available today in the stores (such as Depends, Tena, Attends, etc,) and all the others available on the internet. Yet every doctor or urologist confronts me on why I am wearing a diaper instead of trying different prescriptions that are available today...I always ask them the biq question first..."Have you read my medical record Doc?" The answer is always NO! I always ask next, "Why Not?" That is what it's there for. When they finally do start to get around to the why's and wherefore's and whatnot's they all say the same thing. If Tricare would OK the treatment we could possibly fix the problem. Therein lies the problem...You Joe, are a RETIREE! The Navy's answer to the retiree today is to "Medicate Them Until They Die" approach. Or "Doctors who want the pay and noriety (sp?...fame) of being a doctor but all they want to do is practice Phamacology, (again I can't spell). My next appointment is tomorrow aboard the base near here and even though not what I am going for (I am being see for L-5 and L-4 ruptured vertebra) I will be again in the everyday diaper and the questions will begin anew!

[Baby Brian]

Doey,

I'm in the same boat (USMC retiree with L5 damage). My PCM is in town and I've been referred to urologists on both sides- a bunch of times. It's always the same no matter where you go, which could get a little depressing. My next doctors appt is the 4th and I'm determined to get him to quit with the medications, surgeries, and useless "cures". Why is it so difficult to get them to just try and improve our quality of life (diapers or not)?

[doey]

@Brian...I am also retired GySgt (21 years, 10 months...0369)!

[turtlepins]

I work with veterans, and fully understand the mistrust of our government-run institutions by many of them, and their frustration with the medical care offered. First, thank you for serving this country in such a distinguished manner. Second, know that many of us revere and appreciate every veteran and persons presently serving. Third, we'll keep working diligently to educate physicians everywhere!

[rusty pins]

It never ceses to amaze me that we live in one of the greatest countries in the world but we treat those who have fought for this country so poorly! It's been said over and over so I won't step up on my soap box today. I just can't get over a few years ago how the governmet claimed that returning vets couldn't get their benifits because they were so behind on all the paperwork. Then, in the next breath they claimed they didn't have enough employees to get caught up.

So, then they admit that there are thousands of returning vets looking for jobs but are unable to find them. Solution is simple! Hire the qualified ones to straighten out all the paper work and get caught up on veteran benifits! Train them to do the work! I'm sure many of them, even disabled vets with missing limbs would welcome the chance to not only work, but work at a job that helps their fellow veterans!

[foundationbaby]

It never ceses to amaze me that we live in one of the greatest countries in the world but we treat those who have fought for this country so poorly! It's been said over and over so I won't step up on my soap box today. I just can't get over a few years ago how the governmet claimed that returning vets couldn't get their benifits because they were so behind on all the paperwork. Then, in the next breath they claimed they didn't have enough employees to get caught up.

So, then they admit that there are thousands of returning vets looking for jobs but are unable to find them. Solution is simple! Hire the qualified ones to straighten out all the paper work and get caught up on veteran benifits! Train them to do the work! I'm sure many of them, even disabled vets with missing limbs would welcome the chance to not only work, but work at a job that helps their fellow veterans!

Well said!

[yojojo]

Well I was Born with Spina Bifida, The doctors had to operate on my back to close the hole shortly after i was born. According to my Mum the Doctors told her there had been complications during the surgery and a nerve in spine had been cut. As a result I would never gain control of my bowls and most likely never gain bladder control either. They my Mum that I would most likely be incontinent for the rest of my life and have to wear diapers 24/7.

Well my Mum and Dad Tried to potty train me for years, I was 11 when they gave up and accepted I would need diapers for the rest of my life. The Hospital paid us a lump some of money and agreed to cover the cost of my Diapers, but we still have to pay for wipes, rash cream, and bed pads.

I have no feeling of when im going to poop, it just falls in to the seat of my diaper, but the worst part of this is I can feel when my bladder is filling I just cant control it or when it empties.

I can be sitting in a restaurant chatting to friends and the next thing I know, I have a load in my pants mid conversation.

I would never have chosen to be Incontinent, but after 17 years of living like this I have learned to accept my diapers and make the best of them.

That said, does anyone ever have problems identifying when they have wet or when they are wetting ?

Very often I find I can not tell if I have wet or if I am going, but once I soil myself I know it almost instantly, and I change just as quick.

[dlsmd]

the last dr that asked me this i just lol'd in there face and thay looked at me and said "What!" to which i said "you want to try it your self?"

thats right the dr that told me i should try to get control back was him self partially incon

[turtlepins]

That said, does anyone ever have problems identifying when they have wet or when they are wetting ?

Very often I find I can not tell if I have wet or if I am going, but once I soil myself I know it almost instantly, and I change just as quick.

I have no feeling that my bladder is filling up or that I'm going to pee. It just happens and it's always a flood. However, I do know when it starts, because I do have feeling in my legs and bum, and can tell things are getting warm and wet down there.

[DavidMW]

After I developed diabetes-related peripheral neuropathy I sometimes get sensations that something is trickling down my legs and find myself checking to make sure my pants are dry. Over time I've learned to (usually) ignore it. I suppose that someday I'll have an actual leak and will ignore it out of habit.

[Bettypooh]

Being the skeptical, cynical "B" that I proudly am, if I was Incon and a doctor told me that I needed to try holding it, I'd say something like "Gee, doctor- you mean all those people in wheelchairs are fakes?" We know what the reply would be here- that reality cannot be denied So then I'd show my irateness and ask him why the he!! he expected me to do what I cannot do either If I were really PO'ed, I might add something about how incredibly stupid some people are and that I don't pay for stupidity in my medical care If I got anything less than an apology and a better attitude immediately I would follow up with what I said- I would get dressed and walk out, telling him that he's an idiot and to forget about billing me cause I ain't paying, and I'd be loudly mumbling something about idiot quack doctors expecting people in wheelchairs to walk as I passed back through the waiting room just for kicks knowing that at least some of the patients there were going to ask him what that was all about

I can understand how frustrating it must be for a doctor to not be able to find an answer to your problems, so they can also understand how frustrating it must be to have the problem without a resolution possible. Anyone who cannot understand that and act appropriately on it needs to be educated on how to deal with other humans- something that most of us learned in our very early childhood years If a doctor can't understand what a five year old can, I don't think I want them for my doctor!

As it happens, my GP is one of the most understanding and compassionate Doctors people I have ever met. He takes his job and his patients seriously and works very hard to help with anything he can. He is a rarity in this world and I always commend him on this when I see him- I want good people to know they are truly appreciated in the hopes that their attitude will be contagious!

Bettypooh

[Wetyawn]

i have been UI since 12, and at 15 doctors told me to try kegel? exercises and i tried to no a vale. i was in a car accident when i was twelve and had multiple accident again at 15, 17, 19 and 21 years of age totaling 35 car accident 98%of those were Drunk Drivers. after hiding it in the Military i was given some test for UI and all but one came up negative. the test i failed consisted of the Dr's fill my bladder to the point of bursting... than waiting to see what happened, all while testing my nerves at the same time.... i lost my entire bladder and could not feel it let go nor the "wetness" from waist to 2" above my knee caps, which showed i have permanent nerve damage. and i was going to be stuck in diapers my whole life.... i have had doctors tell me i was fine for years after that (Navy lost my Records) and i always have to asked them "if i am fine than why do i wet my self with out knowledge" and they always response "if you can't tell than how do you know you've been wetting your self?" and i have to point out that my pant are wet, I'm UI not blind...

[Nat]

I can't believe doctors would actually think you can be re potty trained. When you are injured, there is no way you can. Sure there have been people who were able to be re potty trained but does it ever occur to them that maybe their patients have tried and it failed? Also maybe some of them don't want to waste their money on expensive surgery and then find they still can't re train themselves. I am sure it doesn't hurt to still give out suggestions they haven't heard of. I would just decline it if I knew it wouldn't work because I would know my body better than the doctor. I am sure there are some IC patients who would be willing to try to see if it works because most of them don't like their diapers and would prefer to use the toilet like everyone else.

[Creepymouse]

I recall reading an article about bladder reconstruction after prostate surgery. In many cases, or at least so the article said, it may seem to the patient like they have no control - can't even feel the 'clench' that they're trying to accomplish. At some point, for many of them (again, allegedly) it just suddenly starts working after a time of practice, they'll go from complete incontinence to reasonable control in a matter of a day or so.

Perhaps the doctors are expecting similar results, that if you just try, something will happen. They really should be able to understand that you've been trying for many years and it's not going to just 'happen'.

In response to Betty, I'm sure you know some people ARE able to get out of a wheelchair and walk again, but not every injury/dysfunction is the same. It isn't sensible to expect that every patient can, but it makes sense to encourage a patient to at least try. Expecting the patient to continue trying for years, even decades, when there is no evidence of progress or improvement is simply irrational.

[babykeiff]

Well I was Born with Spina Bifida, The doctors had to operate on my back to close the hole shortly after i was born. According to my Mum the Doctors told her there had been complications during the surgery and a nerve in spine had been cut. As a result I would never gain control of my bowls and most likely never gain bladder control either. They my Mum that I would most likely be incontinent for the rest of my life and have to wear diapers 24/7.

Well my Mum and Dad Tried to potty train me for years, I was 11 when they gave up and accepted I would need diapers for the rest of my life. The Hospital paid us a lump some of money and agreed to cover the cost of my Diapers, but we still have to pay for wipes, rash cream, and bed pads.

I have no feeling of when im going to poop, it just falls in to the seat of my diaper, but the worst part of this is I can feel when my bladder is filling I just cant control it or when it empties.

I can be sitting in a restaurant chatting to friends and the next thing I know, I have a load in my pants mid conversation.

I would never have chosen to be Incontinent, but after 17 years of living like this I have learned to accept my diapers and make the best of them.

That said, does anyone ever have problems identifying when they have wet or when they are wetting ?

Very often I find I can not tell if I have wet or if I am going, but once I soil myself I know it almost instantly, and I change just as quick.

Having not been toilet trained, it is understandable that your bowels behave as described. One of the learnt processes in toilet training is to understand the feeling of a partially full bowel, and to act accordingly. Your bowel sphincter behaves autonomic – the same way as it did when you were a chorological infant.

Your bladder is a different process, and most infants will become self aware of their need to void their bladder by the time they are eighteen months old. The habit then, means that they will wake to void – if asleep, or tend to first – make whoever is taking care of them aware that they are voiding, and secondly, tend to hide behind some furniture before voiding in their diaper. This process is one of the key indicators that their caretaker uses to start the process of toilet training.

Since you have no direct control on your sphincters, the sphincter will open via the same infantile autonomic response.

For bladder control, in your case, you could be suitable for an indwelling bladder sphincter. However, since you are autonomic bowel incontinent, you would need a strict bowel evacuation management routine. This would reduce the amount of wet / soiled diapers you have to deal with, but not totally eliminate it.

[babykeiff]

Doctors worldwide, when they encounter a person wearing diapers past the age of 3/4, they tend to feel that said person has a medical condition that the doctor needs to cure. This is part of the Florence Nightingale syndrome, usually the same syndrome that drove the Doctor to choose this profession.

However, most doctors are well aware of the limits of the human body, and what little they can do (as a cure) for a person who has worn and used diapers for a long period.

I know that it is frustrating dealing with doctors like this, but if the doctor didn’t have that attitude, he/she probably not be very good at their job.

Turtlepins,

I like and admire the way you dealt with this.

I encourage everyone else here to be forceful when dealing with the medical professional. Yes, it is their job to cure you, but it is also your right to know what decisions – in plain language - that they are making on your behalf. A doctor / nurse / medical professional is NOT a supreme being, just a person employed, and usually paid by you, to do a job. They do deserve some respect, but respect is earned, not assumed. The nurse etc that is demanding / inquisitive etc into your personal life / into why you are here should be told that it is none of their business. Nurses / medical staff do not make decisions on your behalf without consulting with a doctor. They only follow doctor’s instructions. If the nurse doesn’t know why you are in a certain location, you can be sure that your choice of doctor has chosen not to tell the nurse for a very valid reason – it is none of their business.

[bobbiesueram]

First off let me open with saying spina bifada is not caused by a surgery. It is a birth defect were the never ending are on the out side of the body in a sack like thing. When the child proceeds thru the birth canal the sack or sacks are broken and its from that point down that all nerve damage. The reason I know this is that my twin brother was born a total bifada and was paralised from the wast down and was also totally inconstant and I was born with what they call spina bifada occoulta. My enter spine was not exposed to the out side of my body. But it still left me with a lot of nerve damage. I have no bladder control and very little bowel control. Witch I treat with enamas and what not.

[Ringer]

A chopper crash in 1969 left me totally IC. I almost lost my bladder. After 7 years of fighting with the VA I snatched up my records and told them where to shove it.

After three different doctors I found the GP I'm with now. He's a former corpsman. He sat there and read all of my file looked me in the eye and asked "How may I help you?" At that moment I knew I had found the right doctor.

He examined me and told me that there was no cure for my IC. We went over the different methods to control it and what I had and hadn't tried. He basically told me that the way I managed my IC was up to me. He would only bring up something new if he thought it would help but the final decision was mine.

He has helped me through my PTSD heart attacks and various other things. I think of this man as the brother I never had.

Not all the doctors are B-- holes.

[Bettypooh]

I feel the same about my GP. He has a wall full of citations, awards, records of his leadership at some of the most prestigious hospitals in the US. He went from Grad to heading the research department at one of the biggest Med Schools in the US to start his career. He made huge bucks along the way. Ge is as good as good gets

And then he walked away from all of it His reason? He wanted to help people who were not able to get the basic medical care they needed. He doesn't waste a dime of your money, he has many common Meds on hand which he sells you directly that the pharmacy wants multiple prices on And he doesn't take insurance- cash or credit card only. That saves him from having to pay someone to deal with all that paperwork so his staff can concentrate on you His prices are 1/4 of what the next cheapest doctor here charges, and about 1/8 of the average trip to the Doc for most folks

I am blessed and I know it. This is how Doctors should all be, but very few are. I want nobody else, for I know that here I have the best there is- bar none

Bettypooh

[babykeiff]

Bettypooh,

congrats on finding a good 'un

Yes in the medical field, as with all professions there are two types of people -

1/ The arrogant, self righteous prig, that demands you to treat them as a supreme being despite the fact that their arrogance and posturing is only a methodology to hide their lack of knowledge.

2/ The smart, quiet, respectful, intelligent person who tend to be passed over, and fall through the cracks in life.

I know what type of person I always seek out. It is so true that "empty vesicles make the most noise"

[wetbed00]

I was never dry at night and my soph year in college lost daytime control again I used to have the urge to go and I could usually have no issues during daytime but I stopped feeling the urge and began just being wet. A million dr appts over a course of 5 years finally one Dr. found the small separation in my spine which the nerves were messed up, he said I can narrow it down but there really is nothing I can do to fix it. I have accepted it but dr after dr asks the questions and the worst is Chiro practors think they can fiix my incontinence. I hate everytime I go to a new dr the explanantion process and the thoughts the can fix me ugh!! Well I got super excited a couple years ago My back pain was worrible and I began getting the injections and one day I was sitting at my desk and felt an ureg for just a second and then i felt myself wetting my diaper, I was kind of like OMG I feel that.. I called my Gp and told her she said that is great I said so can I Potty Train and she said flat out no. I was like why not I feel myself wetting and a slight urge before it starts she broke my heart and told me that over the years probably 99% the muscle would have atrophied. I was more upset by this than when i started having the daytime accidents I had just got so encouraged and then Kaboom!!! My Dr. did tell me there could be possible surgeries maybe that may be able to help I was like where do I go? Made an appt with a new Urologist for a week later and two days after i started feeling myself wet it went away, I went to the appt and the uro said they just happened to get that injection that allowed the nerve to fire for feeling and that chances are it was a one time thing seeing the feeling went away so quickly. I continued getting injections for years and never got that again.

Sorry for going on and on and being a little sidetracked, I always hate the new dr appts,and the worst my GP called two weeks ago and told me she is retiring at the end of February so the process will begin all over again!! UGH