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BitterGrey

What key advice did you receive from your urologist about safely managing diapers?

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I was looking into some studies on a medical aspect of adult diaper usage, and realized that there was one systematic difference between adult diaper wearers who are incontinent and those who are not:  Incontinent adults might have received key pointers from their urologists or other doctors, nurses, etc.  In contrast, non-incontinent ABDLs might not discuss it with their doctors for decades, and so might have to learn many things the hard way.   Not knowing what they don't know, they (including myself) might not think to ask.  (Given this, please excuse the broad question.  Briefly mentioning something as previously discussed is great.  Omitting something, assuming it obvious to all, might be problematic.)

What key advice did you receive from your urologist (or other doctors, nurses, etc.) about safely managing diapers?

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Hey Bittergrey, good to see your still around. I've been incontinent for over a decade and talked with many doctors and nurses. Honestly I have never received any good advice from them. It seems that most of them haven't got a clue about what diaper works best for different degrees of incontinence. They think a depends pullup or kendal wings is a good choice for someone with total incontinence. I'm usually the one educating them.  If they say anything anymore, (rare since its established), they usually ask me if I've tried some new pill, or want yet another surgery. 

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The urologist I saw never once mentioned how I was going to manage my incontinence. I was refered to the continence nurse for that.

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my urologist mentioned surgery and I told her no .I told her I was happy with my cloth diapers,an she ask if I knew how to wash and deodorize them?metioned borax in her opinion was the only way.she put me on meds for urge incontinence an an enlarged prostate.said nothing about my having kelman syndrome or the benign cyst on my kidney.ask how many wet accidents I have had,how many times a night I am up to urinate every night or was I soaked upon wakeing in the morning when diapered?

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yes today's doctors have no clue on diapers and types. If collage don't teach it or some sales person don't push it.  Just like xyxy said they will push pills, surgery I have has two different doctors ask how i manage and they both say if its working stick with it. if not we will try something different.

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Sorry that you all had to learn so much the hard way... I had hoped that you would have received better support.  Is there some other resource filling the gap?  Has the pin-it-on-and-learn-from-there school been mostly OK?

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Bittergrey, I’m also happy to see that you’re still around.

Every physician with whom I’ve ever discussed managing my incontinence has recommended that I wear an external catheter with a leg bag. One urologist even told me that wearing a diaper was “unmanly.” As a result, I’ve tried using an external catheter on several occasions. I’ve found that in general external catheters work well, but I very much prefer the feelings associated with wearing a diaper. I’ve also had a couple of major leaks with external catheters. Heaven help you when the tube connecting the catheter to the leg bag comes loose. 

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The urology doctors I see have never mentioned anything about diapers, pads and such things.  Maybe next time I will ask just to see what information I can get from them.

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11 hours ago, BitterGrey said:

Sorry that you all had to learn so much the hard way... I had hoped that you would have received better support.  Is there some other resource filling the gap?  Has the pin-it-on-and-learn-from-there school been mostly OK?

I've self-learned everything I know about incontinence and management through self experience and the internet. Doctors at least in the U.S. do not seemed trained at all in managing diapers as a treatment. They only want to try different ways to get you out of diapers. At least in the U.K. they have continence nurses, which would be a step in the right direction. Basically zero support or info here from doctors. They accept that I wear diapers, but offer no further support, kinda like I'm a failed case because 9 surgeries didn't work.

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Wow... I was given a pamphlet that talked about the types, styles, etc... with a list of web resources for more information. (Most of them are just sales sites.) Then I was referred to a counselor who specializes in helping people transition into the various levels of incontinence, and she gave me a lot of information, such as warnings that baby powders and such increase UTI risk, some powders can increase the risks of certain types of cancers in women, etc... and then recommended a bunch of barrier cream choices, and healthy ways to "perfume" a diaper to mask smells through the day.

And then if that was not enough, they scheduled me to join an incontinence support group that meets at my clinic once a month.

I think you guys need to find some better doctors. (I exclusively see DOs instead of MDs, so that might be part of my better experience.)

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37 minutes ago, GhostGirl said:

Wow... I was given a pamphlet that talked about the types, styles, etc... with a list of web resources for more information. (Most of them are just sales sites.) Then I was referred to a counselor who specializes in helping people transition into the various levels of incontinence, and she gave me a lot of information, such as warnings that baby powders and such increase UTI risk, some powders can increase the risks of certain types of cancers in women, etc... and then recommended a bunch of barrier cream choices, and healthy ways to "perfume" a diaper to mask smells through the day.

And then if that was not enough, they scheduled me to join an incontinence support group that meets at my clinic once a month.

I think you guys need to find some better doctors. (I exclusively see DOs instead of MDs, so that might be part of my better experience.)

Where are you from? I am in the U.S. and get V.A. care, so I don't have much choice. Maybe if I was better connected I could put out some info phamplets to the V.A., but somehow I doubt that would fly.

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55 minutes ago, XyXy said:

Where are you from? I am in the U.S. and get V.A. care, so I don't have much choice. Maybe if I was better connected I could put out some info phamplets to the V.A., but somehow I doubt that would fly.

Texas

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when I first became incontinent I was shown how to put on a diaper by the nurse but she ran through all of the steps to keeping skin safe from the effects of wearing diapers. I was told that the best way to avoid rashes was to prevent them from starting. She showed me the different kinds of creams and how to apply them to help the skin to stay in good condition. Also, I was shown a product that helps to cleanse the skin and kill off bacteria growth but I can't remember the name of it as I've never used it. 

One of the key things I was made aware of is the different types of diaper and the ability to try sample packs, and the difference between ATN and daytime diapers, also the cost of these. Little did she know that I already knew about these.

One other thing I remember is she showed me that using baking soda in your wash also helps with the neutralisation of odours in your wash, and if bathing using bicarbonate of soda in a bath helps to neutralises any odours on the body,

 

There was so much more but it is so long ago I can't remember most of it.

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I've got a referral to see a Continence Nurse, and am just waiting on a an appointment date.  I'm hoping they'll give me some tips.  I've done pretty much my own research on products, lotions, clothes etc.  Have been doing ok so far, but lets see what the Nurse says.

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After I became incontinent I was sent to a continence nurse practitioner who was amazing. She gave me a lot of samples and went through skin care and how to manage being out of the house. I went to 4 follow up appointments and it made life a lot easier.

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The continence nurses are brilliant I have the utmost respect for them.

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Personally, would you ask the salesman who sold you the brand new car how to change the spark plugs?  Not his job.  You would go to the service department and ask the guys who work on maintenance how to change the plugs and oil.  The doctor's job is to diagnose the problem and try and cure or fix it, not so much how to manage dealing with it.  That's why so many diaper companies have, or used to have a 1-800 number you can call to ask questions about using their products.  Simply stated, if a person has to have their arm amputated, the doctor will do the surgery and follow ups to make sure it's healing properly, but the company that makes your prosthetic arm will do all the fitting and adjusting and instructions on how to use it, care and protect your arm when using the prosthetic, etc.  You have a problem with it, your doctor might notice skin irritation or abrasions.  He or she might recommend ointment or creams to heal the area, but your doctor will refer you to the person who fit your prostheses for the underlying problem.  Likewise, I think your doctor would be more interested in healing a diaper rash than informing you how to wear or choose the proper diapers to wear.

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It is great that some of us have received good primers from nurses, although it underlines how much the rest of us needed to learn the hard way. 

At the library I picked up a few books, looking for what a continence nurse might be using as source material.  A quick word search showed that most of them mentioned diapers, but none described their use in detail. 

On 7/17/2018 at 5:26 AM, rusty pins said:

Likewise, I think your doctor would be more interested in healing a diaper rash than informing you how to wear or choose the proper diapers to wear.

True.  I don't fault the doctors for being focused on restoring continence.  Still, there is the reality that in many cases, they won't be able to.  Since the nurses would be the ones changing the diapers in the hospital, delegating the tutoring to them seems reasonable. 

 

On 7/17/2018 at 5:26 AM, rusty pins said:

Personally, would you ask the salesman who sold you the brand new car how to change the spark plugs?

Maybe a bad example.  If the salesperson was claiming that it was easy to service, I might ask him about service details and then check the service manual to see how much faith I could put in his knowledge about servicing the car.  The honesty of salespersons is harder to check.

 

On 7/16/2018 at 8:53 AM, adhb said:

One urologist even told me that wearing a diaper was “unmanly.”

That seems a wonderfully dated and unscientific position. 

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Here in the Netherlands an urologist will not give any advice as it comes to diaper use or managing incontinence in the first place, they will redirect you to a continence nurse or another specialized institution to help you along with any questions you might have and get things sorted.

 

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On 7/17/2018 at 8:26 AM, rusty pins said:

The doctor's job is to diagnose the problem and try and cure or fix it, not so much how to manage dealing with it.  

Depending on what type of provider we are talking about, this may not be correct. I would not expect a surgeon,  who only operates on sedated patients to be helpful on much of anything post surgery.  But if you have a decent primary care provider, and in my opinion you should, they absolutely should help you manage and deal with diapers! There are LOTS of incurable medical issues that need to be managed and if a provider took the approach that if they can't fix it, they can't help you, well that would make them a pathetic excuse for a doctor.

With that said, I do agree that many don't know much of anything about wearing diapers or have any tips and tricks. I certainly know more than anyone I have ever seen. About the only tip I ever got was to change frequently and not stay in a wet diaper too long.

 

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No advise was given but to keep trying different meds to stop the diaper use. Needless to say after all the testing witch everyone came back normal I said heck with it and continued to wear 24/7. 

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Hmm - this is indeed interesting... Actually I learned two really basic thinks in the time when I was volunteering in a hospital - and you can read this also in the manual from a diaper:

1) Make sure that nothings from the back goes to the front. This means: If you diaper a person do it from the front to the rear. The same for taking of the diaper. Why? This is simple. If the diaper get contaminated with bowel bacteria and these bacteria comes to the ureter area it is very likely that you get a bladder infection. This is especially dangerous for women - because there ureter is normal shorter then that one from men.

2) keep it as dry a possible and change frequently. This means: better use a adjuvant that have less capacity but change it more often. The worse think you can do is take a diaper that keeps 3 liters and wear it for the hole day. This is the best way to get diaper rash und ruin your skin.

The last advice I get also from my urologist when I visit him because of my beginning OAB wet.  

More over (from what I had learned):

Don't use powder, don't use oil, use creams only if needed (e.g. barrier creams in case of decubitus). Why? Also simple: First of all creams tend to close the pore of the skin. This make it much harder for the skin to breath what is essential for the health of the skin. More over - the more oil is in the cream the more dry get the skin (sounds unlogical - but is a fact, because the skin stops the production of it's own fat). If this happen, the skin becomes much more susceptible for fungicidal contamination (diaper rash) and do not withstand mechanical stress what rises the risk of decubitus.

About Powder: Powder can cause mechanical and chemical irritations of the skin and is under suspect of causing cancer. It is a absolut no go for modern incontinence care. 

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In my experience, the urologists have been only interested in medical treatments and management techniques, (medicine, procedures, and catheters) I don't necessarily fault them on this as diapers are considered a stop-gap measure either for temporary use or last option.  Catheters require a prescription and medical supervision so naturally, they will tend to suggest them over the use of diapers whether they know it or not!  but they will focus more on the long-term looking at medicines and surgical procedures to end the incontinence. 

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