www.incontinentsupport.org

Good luck with that Michael. It's a struggle for me, but I am really working hard to keep my A1C down. Even though that helps a lot, I still seem to have some ongoing issues in my one eye. Maybe its because of earlier history where my A1C was somewhat higher.

Then again, we're all different. A sibling has more leg and foot trouble than I do and has early signs that they too may become IC. My feet and legs are mostly ok.

Hi Michael,
thanks for sharing your ups and downs. I hope you will have mostly ups in the future.
when you say your bladder wall was damaged, what was going on with it? I have a thickened bladder wall due to spasms. very painful at times. what does the Gepan do for you?

Hello CityGardener

the bladder wall problem was the result of a bladder infection. As a result, "holes" have developed in the GAG layer that have repeatedly caused inflammation and pain. Normally this layer regenerates relatively well, only with me this was not the case - probably due to the diabetes. The Gepan instillations then remedied this. Against the thickened bladder wall and the spasms (by the way, I also have both) it only helped in so far as it no longer hurts that much.

I think this will improve again when I have the prostate operated on, because then the urine can flow better and not so much pressure builds up.

Best regards
Michael

Fun post idea!

Dealing with bedwetting since I was a pre-teen so coming up on 25 years. Yeesh, it makes it sound so much longer now that I type that out.

3 things that still cause me anxiety:
- Having children/fertility
- That one day my wife will see it as hindrance. For the record, she never has even remotely hinted at that but my mind always assume it will happen cause I’m negative by nature!
- ever rising costs of diapers (and everything in life)

3 things that used to cause me anxiety
- traveling - I LOVE traveling so this has been a huge relief (no pun intended)
- changing in front of my wife or being seen in a diaper by her
- starting to be intimate while having a diaper on. I used to always move as far from my wife as possible in bed and tried to not even cuddle too closely

Hopefully the other 3 things will be able to move to the 2nd list with time!

Great idea Rope. Like others have said, I’m one of those members that only visit sporadically and don’t have much to contribute that other more experienced members don’t offer. But your question is something specific and unique to each and everyone of us. So here goes:

Dealing with incontinence on/off since 2005; but really came to a head in 2009/2010; so about 12 years now (wow, that’s a long time ). And all this due to a needed surgery unrelated to the urinary tract, but ended up causing a stricture that lead to the issues at hand.

Things that still cause anxiety:
1) The urinary incontinence might lead to FI. I had an FI scare for a while there, but things seem to have cleared up to a manageable “normal”.
2) Hospital staff that “have to” change me when I can do it myself. It’s only happened twice before I was able to get intervention. But knowing it might happen again at some unknown location … well …
3) Any hospital stay that requires catheterization since that can lead to all kinds of complications.

Things that are no longer stressful:
1) Travel. Wether TSA pat downs or secondary screening (an annoyance of time rather than embarrassment) or letting cruise ship room stewards know so they line the bed and bring a larger trash bin used to get me worked up. Now … well, nothing. I’ve even had a room steward thank me since it took the pressure off of her to “find out” and then make the necessary room adjustments and feel like she was embarrassing me.
2) Trying some new incontinence remedy procedure, drug, or therapy and having it either not work or work for a while and then back to my normal. In the beginning I kept hoping to “beat this”; especially with costs going up as they do! Now, if I can get some relief for the wallet for a while, it’s a “cool moment”. But as I creep back to the old patterns, then I’m just thankful for whatever savings I managed to eek out!
3) Telling any medical staff and/or having them see my diaper (yes, I call them diapers to the medical professionals; that’s what they are). A couple of times my diaper wasn’t even the “clinical white” diapers.

Lastly, a big shout out to all the folks here who constantly contribute here and are willing to help others. I’ve gained so much from this group. And a special thanks to JDinVA who just keeps things plugging away, willing to share his vast experiences/knowledge and is always willing to answer a PM.

Sorry for my long-windeness. Blessings, ILuvLA (gotta change that handle since LA is not so lovable these days).

I'm really glad I'm not the only one this has happened to. Back in 2012 I tried Enablex and it was this... just completely life-altering experience. For a few days. Then, like you said, back to my usual.

I've never really known what having a "normal" bladder feels like. I've sometimes had a frustrating time trying to communicate with people who do have normal bladders, because what I assume a full bladder is like, and what they assume a full bladder is like, are two completely different things. And I can't really understand it from their perspective, because I've never had that perspective.

I think the Enablex gave me a little piece of that missing perspective, for a few days. I felt so amazing just sitting there with a full bladder and feeling like -- I could put off peeing for an hour like this, easy. Heck, I could put it off for two hours probably. And I was wondering -- is this what normal people feel like all the time?

It's an experience I wish I could have recorded somehow and I wish I could play it back for myself now, but at the time I wasn't thinking that -- I thought I was "fixed". And then the Enablex stopped working, and then I realized what an amazing kind of once-in-a-lifetime experience I had had for those few days.

I've been dealing with IC issues for about 5 1/2 years now, progressing from the occasional dribble to diapers 24/7. I did have a reprieve of about a year and a half where I regained enough control to go without protection, but am now back in diapers at night and any time I don't have quick and easy access to a restroom.

3 things that I still worry about:

1. The rising cost of products - I know what works for me and look for the best deals on suitable diapers from about 3 suppliers.
2. That I will have to call an ambulance while diapered - I know almost EVERYONE on the local fire departments. Due to #1 above, I often buy printed diapers when they are on sale and wear them to bed. The thought of having someone I know see me in a printed diaper is devastating!
3. Travel - the amount of extra "stuff" I have to pack to go on a trip (on a good note, my luggage is much lighter on the return trip!)

3 things I no longer worry about:

1. Changing in a public place. I've done it enough now that I realize people don't even notice. I've carried a disposable in hand through a parking lot and fast food place to the restroom and no one has batted an eye.
2. That people will "know" I am wearing a diaper. Again, most people are so absorbed in what they are doing, they won't even notice.
3. My kids knowing - Our adult daughter's (she's a nurse) clothes washer broke so she has been doing her laundry at our house recently. She has seen my cloth diapers and plastic pants in the laundry room and I am sure she has spoken to my wife about it. Of course if she knows, our other daughter knows, but no one has brought it up.

Long ago, as I was starting on this journey, my wife finally told me to "just wear a diaper and get on with your life!" That was probably the best advice she could have given me at the time and it was at that moment that I chose to own my situation and move on. While I do try to be discrete, I don't worry too much about who knows. Several people "know" at this point including family and friends, and it hasn't been an issue. It can be a pain in the A#@ at times, but it hasn't stopped me from doing what I want to do.

_________________
"When you die, on your deathbed, you will receive total consciousness. So I got that goin' for me, which is nice."