www.incontinentsupport.org

I want to talk about things that don't necessarily fit in with the "How do you deal with your incontinence" subtopic, and that topic seems to have more than enough posts by me . I just want to give a general life update. I recently went to see a urologist PA because my incontinence seemed to get even worse than usual, and I wanted to make sure that no new problems were developing. Like Elijah said in his post, incontinence is old hat and I manage quite well most days, but when a new pattern emerges, it's best to not assume its normal. She has me doing urodynamics and a cystoscopy. FUN times ahead... NOT.. but really, its not a huge deal.. it wont be as bad as kidney stones.

I really like Ecoable's range of cloth diapers for adults. They have something for everyone.. fitteds, pockets, pullups, a pad in cover system, etc. Their selection on style is not as extensive as Adult Cloth Diapers, but they have some very stylish diaper covers. I wear cloth almost exclusively until recently when I found attends to be more decent than Tena in terms of fit and comfort and actually staying on my body overnight. Right now, I'm giving cloth diapers a break. I want to catch up on washing diapers and the rest of my laundry. I ordered a case of Abena X-Plus plastic backed, because it was the cheapest case available on LL Medico. It surprises me that I shop more on LL Medico than I do on XP Medical these days, but prices on XP have gone up and up and up. It's disappointing to see. Yet another reason to stick to cloth. But also disposables are essential for travel and whatnot. I was wearing a cloth setup with a romper the other night at work and had a skin reaction afterward thats not really a rash, but similiar. It looks blotchy and now it looks like a rub burn. Whatever it is, I don't want to wear cloth for a while.. let that heal. Not that my usual cloth products cause that, maybe just the romper, and maybe it was worn without being washed? Not sure. It's hard to remember sometimes what products have been washed and which have not By the way, Abena has new tapes on the X Plus plastic backed AKA abena comfort. The blue tab is plastic, but the top white second chance tab is now a fabric tab. It still sticks, but not as well maybe? I've had mixed results with the bag I'm using. Not sure if this means that Abena X-Plus in general has gone down in quality or I just got a bad batch.

Back in December, I was diagnosed with mild sleep apnea. Was not expecting that. That was an odyssey in itself. Holy cow.. I actually spelled the o word correctly. first try. Its just been a pain in the butt but I try to find the silver lining. Putting on that CPAP mask made me feel like a figher pilot. I couldn't help but say, Ghostrider, this is Maverick . Recently I broke down in anger, and told God that I just dont know if I can take this. This sleep apnea/cpap stuff is new and its a pain in the butt, and much more serious than incontinence. If you leak urine you just wear a diaper, but without treatment, you can stop breathing and risk damage to your heart.. So the stakes are higher with misadventures. Turns out I was wearing the wrong headgear for the mask setup I have all along. CPAP machines cost a pretty penny. Insurance has covered everyhting, but i balked when they showed me how much I owed them if I decided CPAP was not for me and did not return the machine. Over 2 grand! For a little tiny device that doesn't look like much. A mask part costs 50 dollars out of pocket. Thank goodness for insurance.

Last but not least I have been considering alternative management methods in my mind. One hugely suprising develpment is I actually contemplated whether using a penile clamp would have merit. Yes, you read that right. I noticed that when I felt an episode come on when I was in the bathtub if i pinched down there and held it tight i could control for a few moments the flow, and prevent an episde. But then I'm worried about how much pressure was building up and wheter urine could back up into my kidneys. My past urologist actually mentioned a clamp as a management method, which I rejected out of hand. But it may be a viable optin for just around the house where it is convenient to release the clamp every 30 minutes to an hour and I dont want to wear a diaper. Something to think about anyway. However, when I looked at similar options it said it was for mild to moderate leakage from stress incontience. I left behind that boat LONG ago. If anything, I am moderate to heavy. Has anyone tried a penile clamp to manage their incontinece? How did it go? Was it comfortable? My sisters brought up Interstim once again.. my older sister can't let sleeping dogs lie, and now she has my younger sister in on it. She was talking about my engagement and marriage upcoming and metnions a surgery that I should have before I get married because Tricare would cover it. I'm like what are you talking about? She said, oh that interstim. I said, I am not going to do that. I proceeded to tell them that my urologist said it woudlnt work and she wa unwilling to implant one in me because it would cause more problems than it sovled. My sister is like well you cant let her live your life for you.. I was starting to think.. well i dont want YOU to live my life for me either. She then brought up how it must be inconvenient to always have to plan to bring diapers EVERYWHERE etc.. I said, yes you have a point, that does get annoying. Sometimes I don't bring enough or am delayed and my supply for traveling barely gets me through. I had to wear my diapers longer than normal thankfully they were dry because I was delayed by a day travelign and only had 3 diapers with me. So, I am once again possibly contemplating interstim. I think i would have to be in dire straits peeing myselfe night and day with no end in sight before I ever consented to surgery.


In other news, my fiancee and I are trying to figure out how to plan our life. We are having good discussions about what we both need and want in a relationship. I am very lucky that she doesn't care about the incontinence. I don't know if I mentioned this before but her mom made an offhand comment about whetehr she really wanted to marry me due to incontinence.. if I interpreted the conversation correctly. I was a bit hurt by that, but am forgiving.

Woah, sorry for the novel. Just a lot to update everyone on. Haven't been on this site in a while.

Peace out!

Rob

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Thanks for the update. Incontinence influences nearly every aspect of life, which makes your account so useful. Family members can be loving, but clueless when commenting about our incontinence. setting them straight can be a fraught action, best left to others.

Hi Rob,
My guess is that the rash is due to not washing your new diaper. To many different manufacturing chemicals could be present.

Good point about checking with your Dr when your IC behaviors change. I will keep that in mind.

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- Tom

Good update. WetDad has a good point about washing that cloth diaper before wearing it. Also, try changing the soaps you normally use and see whether that makes a difference.

High stakes yes, and also it's the whole thing about becoming a cyborg. You wrote later on in your post about *not* wanting the Interstim, Which I also empathize with. I didn't want one either. And now you have to be hooked up to "a device" when you sleep. I imagine you have to pay more attention now to which way you roll over, or whether you can scratch your face if it itches.

How is it going at this point? Did you get the correct headgear, and how is that?


I had a hard time when I tried one. It worked very well to keep my pants from getting wet. There wasn't any leakage, not even a little bit. But it was awkward to release the clamp when there was pressure behind it. It tended to spray everywhere. And it also did nothing to help the fact that I still really needed to pee badly.

I don't really have much "in between". If I need to pee at all, it's at emergency "need to pee NOW" levels. For a long time I had a very hard time understanding how anyone else could be NOT like that. It's always been like that for me, and I just took it for granted that if it was like that for me, it had to be the same for everyone else. I now understand that, actually, for people with "normal" bladders, they can often be quite comfortable holding it in for long periods.

Maybe penile clamps work better for people whose bladders are more like that? The clamp would work to stop the leakage, and their bladder could comfortably hold it in for "a while longer" until they got to a bathroom?

Bcca, you were asking about how its going with the CPAP mask. After some trial and error I found a mask setup that works well. I don't have issues other than remembering to clean out my CPAP machine. Thanks for asking. I am well otherwise, and feel like God is bestowing blessing after blessing.

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II