I thought I was in the clear.

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Since changing meds and starting physical thearapy last month I have been completely dry. After going into diapers full time in early Feb I was completely dry and not wearing any protection for the last 3 weeks until the last 24 hrs where I’ve had 3 losses of control. I just felt a terrible sadness come over me as I diapered myself Again. Almost worse than the first time. How do I accept this condition? There’s so little info from docs on managing it. They suggest maybe wearing diapers but even stuff as basic as telling me what to do to prevent rashes and stuff they don’t do. I honestly don’t even know how a diaper is supposed to fit. How I should go about changing in public or at work or anything like that.

Between the lack of knowledge about how to diaper myself properly and the overshelming lonliness of not knowing anyone else offline my age who deals with this, I just feel lost angry scared and depressed.

 

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When I'm down I remind myself of others who are much less fortunate and have larger handicaps and difficulties, kind of to give myself a reality check that life is still OK.

 

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I get it. I often feel like I am simply waved off when I ask questions. No one seems to have answers.

 

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I completely understand your frustration. I have had similar experiences. I can be dry for several days. I then go with conventional briefs, and can have a complete flooding. After my last urologist appointment one year after my prostatectomy and another urodynamic study indicated that I have a very large bladder which can cause overflow incontinence. I'm to the point where I'm afraid to venture too far without wearing a diaper. It is what it is.

 

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You need a new urologist: patient education should be part of every visit. A couple of tips from my experience: 1. preventing rashes - keeping as dry and clean as possible is paramount. There are products on drugstore shelves that are recommended for babies and toddlers that work for us grownups also. 2. fit = start with comfortable, then move on to secure against leaks (mostly around the legs). 3. Changing in public restrooms and at work: here's where diapers with tabs are easier to use than pull-ups if you are wearing trousers or shorts because they can be changed without disrobing completely. I am careful to carry some opaque plastic bags to use when disposing of a wet diaper in a public restroom. The anonymity of the web doesn't let us know how old you are or whether you are a man or a woman, but I have seen postings from all sorts of people on here. It is possible that the social services department of your local hospital or health department would know of a support group that meets face to face.

 

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Great advice from everyone.

Newbie2this - I'm so sorry to hear your frustrations, and completely understand them. But know that you are not alone and there is a lot of information out there for you to pull from (although I know all the different sites and information can sometimes make it feel even more overwhelming.) NAFC has great info, and some specific tips on the things to look for in an absorbent product (https://www.nafc.org/absorbents). I think the big thing is to know that it really is a trial and error process - folks often try several different types of products before finally finding one that works for them and fits them best. There are many different online companies that you can order from that allow you to call and talk with a customer service rep who is often well trained in helping someone find a good product for them. Be open and honest with them for the best results and think about your level of leakage, your activity throughout the day, and what will be the most convenient for you in terms of form and function.

I think it's great that you are starting physical therapy and urge you to not get discouraged. You've obviously seen some big improvements in a short time if you were dry for 3 weeks prior to being in diapers full time. Take that as a positive - maybe your next episode, if any, will be 4-5 weeks out, then 2 months, etc. The body is amazing and can really do wonders if you are given the right guidance and help training it. But it takes time, and there may be occasional setbacks. Just roll with them and know that you are getting stronger every day.

Best of luck to you and know that you are not alone. We are all here to listen and to offer words of encouragement, education, and our own experiences. This forum is a great place filled with wonderful people who really care and want to help. I'm so glad that you found us!

 

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I get it. I often feel like I am simply waved off when I ask questions. No one seems to have answers.

We may not have all the answers here, but we certainly WILL NOT wave you off, ArtMom !!!

 

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I didn’t mean waved off here. I mean with the physician. Sorry! Didn’t mean it any other way. Knowing about this site sort of saves my sanity.

 

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Totally agree artmom. This site is great but any other medical problem needing something would get training, be it an oxygen tank, wheel chairs crutches, knee or leg braces etc a nurse or theripist would show the patient how to use it properly, how to fit it and how to know if it’s working right or something.

In my case I was handed a stack of adult diapers with my hospital discharge paper and told to just pick up some depends at the cvs.

The way the medical profession treats incontinence in this country is definitely below the standard of how other conditions are handled.

 

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I didn’t mean waved off here. I mean with the physician. Sorry! Didn’t mean it any other way. Knowing about this site sort of saves my sanity.

Not to worry, ArtMom. I knew what you meant. It so often IS the 'professionals' who dismiss us. I've had that experience a few times -- simply being waved off by those who could at least have referred us to product resources or maybe even forums like this.

Indeed, sanity is spoken here! We do support each other in many ways. Often, all it takes is a little compassion, someone to listen and an occasional dose of our own kind of humor.

 

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Doctors don’t give a shit. Fact of life, I get it and it sucks. I’ve been to 13 doctors each more clueless than the last. You’ll get way more information from the pros here. The folks here are on the front lines of incontinence everyday. We know what works best for us because we have gone and learned through the process of trial and error.
Doctors aren’t trained to advise people how to wear adult diapers or which ones are best. They write prescriptions for overpriced drugs that only benefit the already deep pockets of rich people who don’t give a fiddler’s fuck about you or your condition. Mostly the meds give side effects without providing even a little bit of relief.
If it sounds like I’m bitter, it’s because I’ve been “waved off” by pretty much everybody who I thought might “help” me. I’ve been left to pick up the pieces of my life and had to figure it out on my own and I don’t feel it’s right that ANYBODY get treated this way. I work way too hard and spend way too much of my paycheck on health insurance provided by an insurance company that calls my adult diapers (which I need due to medical necessity. Ie. urinary incontinence) “convenience items” and thus they are not covered by my premium health insurance plan. I have to pay out of pocket for them.
Doctors are paid and paid well to do a job which is “to help people” but they don’t actually “help” anybody but themselves and the big pharmaceutical companies get richer and richer. I’m sorry for the rant, but you (we) deserve much better.