Slomo

I'm in the USA so I can't help you there. But welcome. What caused your incontinence? Got anything related to it you'd like to share? Or have any questions?

Yes. I did use a condom catheters before. I had it hooked up to a leg bag, which was very inconspicuous. But because of the catheter coming loose I started off with also wearing a diaper, just as a backup. Then it hit me, if I'm going to wear a diaper anyways, then why was I even bothering with the catheter and extra bag.

I saw my urologist again. My urodynamics test concluded that I am retaining urine, but oddly so. I sometimes leak a little at times, but mostly retained. And there is no feeling or activity in my bladder, plus I reached 500+ ml before getting an urge. And once I pushed just a little, that got the pee flowing until nothing remained in my bladder. My cystoscopy showed there are no obstructions in my urethra. And they put some water in my bladder to visually confirm it does not activate or contract. I also didn't leak any of the water when they removed the scope. Only after standing and coughing did my bladder fully empty. We talked possible options again. I said my biggest concern is my bladder filling and me getting painful urges, as well as the interrupted sleep. I also confirmed I do not want a diversion with stoma, and that I would prefer to just empty my bladder automatically. My urologist said she isn't sure what can even be done. The urodynamics confirmed at least a partial obstruction, but the cystoscopy confirmed no obstructions. Stents are still not an option as the existing ones on the market are no good for long-term use, and any possible new ones are still under clinical trials. She has an internal conference meeting next week where they discuss "difficult" patients like me. I said it was ok for her to talk about my case, and get possible feedback from other urologists. So all I can do is hope something will come of it. But I'm also going to seek a second opinion from my VA urologist next week. So we'll see.....

Thanks. Mind if I DM you about a separate question regarding DD?

I should also say I know a bladder diversion with a stoma (new pee hole in my abdomen) is one option. I'm actually quite happy using diapers though, and I finally get Megamax diapers free from the VA. Also, I really don't want to have to mess with catheters ever again. So for me, that option is already out. I've also looked into urethral stents. Current mesh nitol (nickle-titanium) stents cause encrustatuon and promote strictures. They can't be used for more than 1-2 years before they have to be surgically removed. There is a new generation of closed-cell biocompatible stents being tested. They "might" be another option, but my current urologist doesn't use stents due to their previous limitations. So it looks like that may not be an option either. Bladder botox is also out. I've tried it before, and the botox only makes things worse for me. The body will also adapt a resistance to botox over time. So at best it's a temporary "bandaid" anyways. Meaning botox is also not solution. Just spit balling on this one, but is it possible to sever the nerves to the bladder while otherwise leaving it intact? That wouldn't exactly solve the problem of it starting to fill up every now and again, but I already start leak again whenever any pressure is applied. It might completely remove the painful urges though. So maybe it's an option? I'm not sure. What other options am I missing?

Ok, so here's what I have going on. I have severe urge incontinence, meaning whenever my bladder starts filling up I'll get severe pain out of nowhere, that I need to pee asap. But due to a Detrusor Sphincter Dysynergia, whenever I tried relaxing to pee my sphincters would clamp down instead. So about 10 years ago I underwent a series of sphincterotomy surgeries to fully open up both my external and internal sphincters. That lead to strictures, which ultimately led to a radical prostatectomy and removal of an inch of my urethra. Ever since then I've been functionally urinary incontinent. Since my bladder doesn't fill up I don't get those urges. Except whenever I sit on a flat surface or lie on my side, that seems to clamp off my urethra and allow my bladder to start filling again. Eventually I'll then get another severe urge, which often wakes me up at night. A simple shifting or deep breath is often enough pressure to get me peeing again, but the pain and broken sleep has already disrupted me. So, do you think I should do anything to try and resolve my problem more? And if so, what? Or am I chasing after more than I should expect, and be happy I'm at least stable and able to pee at all. FYI, I've already just seen my urologist about this, and we're starting off with a series of tests to see exactly where my baseline is at right now. The actual course of action will be discussed after that, but I'm wondering what options I may have before hand.

Hi. So what brings you to here? Got any questions we can help with, or advice/experience related to incontinence?

We can develop various food issues, or even issue from not eating the right foods. Anything processed or oily will give me the runs. And not enough vegetables will give me constipation. But even just generally bad eating can induce constipation that presents as diarrhea. This is because severe constipation can cause a partial blockage, which only lets loose stool pass. This presents as occasional or even constant diarrhea. And taking a stool softener (like Miralax) will help make things more consistent. Literally eliminating the diarrhea by eliminating the constipation. Though as you've found it also "breaks the dam" and lets everything pass through in a hurry. This is just something that can happen to people as they age. Our bodies aren't as resiliant as they used to be. It also happens to anyone who needs to take opiot pain killers, especially for chronic pain (like me). I do know you can offset it from happening by drinking more water. And also by taking in the right anount of fiber. The obvious vegies are best, but even just a couple of fiber pills will help too. Or conversely, if you get too much fiber (or red meat), then reballance your diet accordingly. And that daily low dose of laxative? It just makes sure everything keeps moving as it should. And once you get past any initial blockage, a low dose shouldn't affect you as much. Only enough to make sure it doesn't keep getting blocked. But if you do keep getting constipated, and the laxative keeps causing a case of the runs, then again you need to reballance your diet. If that's the case, keep taking the laxative and go back to your nutritionist.

I've understood that's quite common. Anyone who's had to deal with incontinence or bedwetting well into their teens, has it come back as an adult. And the longer you had it before becoming dry, the sooner it's likely to return. It's not exactly a well studied malady though, so I couldn't tell you why that that is. But I've heard enough accounts of it to know you're far from alone in it.

Welcome. What type of Nappies (or Diapers) do you normally wear? And have you figured them out pretty well, or is there anything you're still learning to deal with or have questions about?

I'd also say ATN is the bare minimum for a still functional diaper. Molicare is ok enough too. They'd be worth it if free, but I wouldn't buy one unleass it's an emergency. I've also noticed a trend of adult dayroom and daycare facilities. There mostly just places where older people can socialize and play games, but also talk to an aid if needed. And yeah, I'd bet that diapers are quite common in day facilities like them.

I could never do that to someone else. That's why when the VA sent me Depends and Attends I threw them right into the trash where they belong. I even saw the trash guy stop and look at them. He pulled out his phone for a minute (presumably to look up their worth), then even he tossed them into the trash truck. And you know they're worthless when there worthless to the trash guys. But a surplus of Megamax? Now those I'd never toss out. Donate at the very least, or possibly resell them.

Exactly. A case of Megamax is 40 diapers. Since I only need 60 per month I was fully expecting 2 cases, or 80 diapers. That would give me a few extras, but 120 IS overkill. Hence why I'm thinking I'll build up my stocks for a couple of months. After that I'll ask to switch over one of the cases to get boosters instead. Which I need to increase the Megamax's capacity for my overnight nocturnia. Either that, or just keep the overkill extra supplies. The pharmacy has already told me that once I get them, the VA doesn't care what I do with them. Even donating or selling them off. And a case of Megamax could easily sell on Craigslist or Facebook marketplace for $50 or even $100. Ebough for me to buy the boosters AND pocket a little extera spending cash. Not sure I want to go that route though. Just because of the ethics of it.

Same, but I literally told them how many I need. And they made it out like cost was such a huge factor. I can see them giving me a few extas per month, but literally double? It makes no sense.

Cross posting from here: Thanks for the info, it helped. It was still an uphill battle though. Too many cheap diapers had to be ruled out first. My urologist had to re-confirm what I needed several times. I had to talk to the pharmacy to re-confirm what I needed a bunch of times. And I had to file a complaint with the advocate. Not to mention waiting 9+ months to get a committee tocapprove them. Like seriously, having a kid would have been easier and faster. But like the title says. Veterans CAN get diapers from Northshore.