Hello family. Hope everyone is doing well on this Sunday on frosty January morning. I decided to Broach a topic that is not freely spoken about and that is incontinence. . I've spent years. struggling with my bladder and I might go through stretches were I have some control but then I'll turn around and hip stretches for I have little to absolutely no control of this bladder of mine. And I know for me personally there is not another issue with MS that can cause such embarrassment or lack of self-esteem to feel as if you are a baby in diapers that has absolutely no control of your bladder.
I wish that years ago when I became diagnosed and started to notice a down hill spiral in bladder function and control I would have had the foresight to take stock out with the Depends company. If I had I think I would have been a millionaire by now. So for anyone else in a similar situation understand number one you're not alone. And number two I have found a way to help fight embarrassment and all too often reality of having total blowouts in the Depends and clothing department..
I used to buy the maximum absorbency thinking that was all I needed to protect myself. Unfortunately for me I do not have bladder leakage problems. When my bladder decides it's time to empty itself, it totally voids itself and I have little to no time to get to a restroom and no control slowing down or stopping the flow I know this is more information than you needed but this is a problem that a percentage of MS patients desl with when they have a bladder with a mind of its own. These total blowouts happened so often it was a true fear of mine and led me to always having a change of clothes and extra underwear or depends with me. Even then it didn't help with the embarrassment whatsoever. If nothing else I often would be out and about or at meetings excetera and I would have to go into a bathroom stall take off my shoes and pants and switch out depends and if the clothing wasn't too messed up I put it back on and if it was I prayed I carried an extra set with me. Anyway you looked at it it was a losing situation because who wants to undress and then redress in a public bathroom stall. It is less than sanitary and totally embarrassing and gross. Then there was always having that to remember to pack a bag along to take the wet clothing home with you. Oftentimes it just became too much to handle and it made you want to just stop going out and about.
Finally just a few months back I stumbled upon a solution that greatly reduced the number of blowouts that I was forced to do with and those gross Changing of the Guard so to speak in public restrooms when my pants and underwear needed to be changed due to a blowout. A simple solution I figured out oh, and I'm sure many of you have already done so, is inside my Depends I now put a thick extra-long maximum absorbency incontinence pad. The beauty of the setup is twofold. I have found that by joining this I have reduced the number of blowouts for my clothes become involved to less than 10% of what it used to be. The second benefit was totally unexpected but greatly appreciated. When I lose the battle in my bladder empties itself. I can often times just zip into the restroom and switch out my incontinence pad and leave my dependent underwear in place. That saves time and saves the hassle of having to undress in a less than sanitary gross public bathroom.
The only issue you have to be careful about is the incontinence pads stick so well to the depends that it can rip the lining out of this depends if you're not extremely careful when you peel the pad off. Typically I find that if I replace the pad twice by the third time I'm forced to replace the Depends because there's nothing left of the interior. How to be noticed here if the incontinence pad has been on the Depends for an extended. length of time be it overnight or an all day thing those the Depends and the incontinence pads will have to be replaced. It seems that wind the incontinence pad and the defense to come in direct contact with each other for more than just a few hours the bond between them becomes unbreakable and you will rip the bottom out of the Depends Underwear out trying to remove the incontinence.pad.
It will take some time to figure out what works best for you. Once you figure out the combination that works best for you you will be amazed much better i and more confident you feel not to have to worry about blowouts in the clothing department.the security wearing the this is an important ecurity of having incontinence combination that really helps to reduce the number of accidents is worth the effort it takes to figure it out.
If anyone else has any ideas or tips that can help with this topic of incontinence please share them. The only way we can help to figure out how to beat this monster is together. Remember together we are stronger! Fancy.
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Fancy1959
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I understand where you are coming from. For years I carried spare underwear and pads but for my periods. I bled so heavy that I would have sudden outbursts like turning on a tap. So I got used to always having spare dark underwear, and always wearing dark trousers. Then I had a full hysterectomy and I thought great, no more pads, being able to wear white trousers if on holiday, wrong! The bladder started. You get the feeling that yes I need the toilet, but my the time you get there, the flood gates have opened. I can go days without any accidents at all, then out of the blue, wet, I have spare underwear etc in my bathroom just in case. I donβt go out without spare equipment, including wipes for the toilet, wipes for me, my walker handbag is full of wipes of every description, pads, and spare underwear ets. So I will appreciate any tips anyone can offer. Thank you for this post Fancy, blessings Jimeka ππ½
I don't know if there is an answer to thisbut I know in the past MS sufferers used to use intermittent self catheterization but I think this may have led to infection if the user couldn't accurately "feel" much down there so not recommended any more. Do you maybe have a continence nurse team or an MS nurse team who could give advice? I do empathise, not just sympathise as I have had these ver embarrassing events myself but due to the post natal type exercises I do as often as I can, these events are much rarer.
No one has a specific answer because it's just part of Ms and how it affects the bladder. Even my urologist basically is that a loss of how to control my incontinence. He said Botox is effective for some people but will not stop the sudden urges, simply will allow the bladder to hold more. My comment to him was what a waste of Botox! LOL! If I plan to use botox it's going to be on the face where everyone can see the results! Thanks for the input and thanks for the support. Fancy.
I self cath and yes you are right about infection risks, I've been very lucky to haven't had a full blown infection yet. I was starting one when I went to an appt with my urologist and when they did a urine test for any is when they found it. I did some medicine and that was it. The reason I have to cath is because I wasn't voiding enough. I was holding way to much in my bladder.
jimeka, thank you for the support and fellowship. I'd really wish that no one in this chat room had to simplifies understand where Bladder incontinence comes into play. As the old saying goes it is what it is and we just adapt and deal with it the best we can. πFancy.
Do use Adult Diapers(Nappies) whenever you step out of your home. π
I know, there can be dignity issues.
But to stay away from embarrassing situations, do use them Fancy1959 .
Supremo, when I get up in the morning when they go on. I've not been able to use regular underwear now in about 2 years. I totally agree with you it's a dignity and embarrassment issue. I was just offering tips for everyone who's standard adult underwear for incontinence was simply not quite enough protection or coverage. I was also offering a more convenient way to fix any incontinence incidence you have I simply changing out the pad that you insert inside your adult underwear. Fancy.ππ
Fancy, you brought up a subject I've been thinking a lot about lately, as I've noticed more urge incontinence. Kegel exercises may or may not be helpful in those of us with MS, depending on what's causing the incontinence. I've done Kegels in the past with good results, and here are links for both men and women for anyone who is not familiar with them:
Kegels may be helpful to a degree for some of us, but it's a good idea to talk to our doctors to see if there is anything to help, especially when it's not just weakened pelvic floor muscles that are the cause. It's a good idea to be checked for a urinary tract infection or other problems if incontinence is a new thing.
Thanks for bringing up this subject. I hope to see lots of tips on dealing with incontinence.
Δ’reaterexp, thanks for the tips in the links for those in the chat room who are researching this topic. Your support has always is so appreciated as are your kind words. Thanks again! Fancy.πππ€
Hi Fancy1959 it's a great post that a ton of us deal with! Like greaterexp I did the kegel exercises. But they didn't work. My neuro said it was spasticity and put me on oxybutynin. It works great!!kβΊοΈπ€π
Jes. The oxybutynin you take for your bladder spasticity is given orally or is it injected? How often do you have to take it as well? I am very curious now and if anything positive comes out of this post such as me not having such issues with my overactive bladder or bladder spasticity I will be thrilled to death that I took the bull by the horns and posted about my bladder with a mind of its own! I look forward to your reply tomorrow. Thanks for all you do! Fancy.
Jes, I dinged out because I was thinking of Botox not oxybutynin. I already take oxybutynin and it allows me to have some control on certain days but on most days my bladder doesn't pay much attention to it at all. Bah humbug! Something's got to work better than that. I can't depend on the oxy at all because there are spells of 2 and 3 days in a week and I have absolutely no control while I'm on it. Please let there be something else out there discovered in the near future. It sure would improve my quality of life well fighting this MS monster. Fancy.π²π€βΉ!!!
Oh yeah, the bladder with a mind of its own. What a pain. I got into the habit to hit the restroom every time I see one and before any trip or activity that will last 20 min or so, or if I have not done so in 2 hours. It's not totally bulletproof but has avoided me a lot of embarrassment.
One of the issues I have is that certain trigger set my bladder off. When I pull into my garage I have to go immediately. Oftentimes, I can't even make it into the bathroom in the house to go without wetting my Depends. Another trigger and you're going to love this one is my bladder decides it has to go as soon as I open a bathroom door. Talk about embarrassing! I'm seconds away from using the toilet and I can't hold it for an extra 20 seconds to get there! It drives me nuts, not that I really have all that far to go! LOL! If we can't laugh at things like this what is the point? π₯π°πFancy.π€£π
I would also like to suggest rubber pants which can be put in over your depends with extra pad. It adds an extra level
Of safety against leakage. I am talking rubber pants like those used with infants and cloth diapers. I found some adult ones at a large local pharmacy. It is hard to accept the idea with dignity, but when you realize it saves your dignity and embarrassment of blowouts and leakage it is tolerable.
Also, there are chair or bed protection pads that are helpful just in case. These can be purchased on amazon in various colors and patterns to match your furniture or vehicles.
livewell2, thanks for sharing another really great idea! Your suggestion could most definitely add one more level of protection when you know you have an important meeting or an extended period of time where you have to make sure you don't have any accidental blowouts! ππFancy!
Okay, Fancy, anatomically you can't use this tip., but... When I fish the "big lake" here in Chi-Town in the spring, when it is still icy cold out, where and when you have to keep the splash from the waves from hitting you or you get pelted with ice, but on that quest for the salmon that come every year into shore that time of year, a guy can use an external catheter. It's kind of like a condom with a hose attached, which leads to a bag with a drain. Okay it's not fashionable, but nor is layer over layer over layer, all contained within a snowmobile suit. We do this why? Oh yeah, the fish! Nothing like pulling in the salmon and trout hand over hand on the equivalent of trot lines launched out a football field using a a fire extinguisher and weight attached to a really, really long rubber band. You pull in the rubber band, stretching it about 200+ yards, clipping on your 50' trot line with many hooks, all baited, ready to tempt any passing fish. Okay, more than you wanted to know, but it's a Chicago thing. No where in the world does this occur. Really! Yes there's a reason why, but it's long........ no,.............................. long! And I'm off topic. Just getting that many layers of clothes off, even a guy, to be able to go, takes time! When your warning goes off, you know you have only xxx seconds till go time.... The M.S. also keeps you on your toes!
Okay, besides that, have your phone GPS set to auto detect public restrooms. An alarm goes off on mine if an available restroom is not within emergency distance! And I nearly always wear gym shoes. Yes even in the snow! I'm ready to go at a moment's notice. Literally! LOL!
Mark, you really know how to put into words that I'm not alone. Even if our anatomies are so different what works for you might not work for me in your whole example. At least I understand it's the same for guys as it is for girls when it comes to MS and bladder urgency. I've often been jealous of the male anatomy and how simple it is to go pee without undoing layer upon layer of clothes! Your idea adds a whole new layer of jealousy to the issue! LOL! Thanks again for the fellowship and the kind words of support. I can always count on you to understand. Fancy.
Hello Fancy1959 This is not Doctor approved but I have had the bladder problem for over 15 years, I have come up with something that works for me (after the doctor told me I would have to begin using a catheter). I found if I use a 24 ounce bottle of Nutiva Hemp seed oil (Amazon) and put 4 Cannabis buds (I grow my own and it is not very strong on THC it is more like hemp buds) in the bottle of oil and let it sit in the fridge overnight. I take about 2 table spoons of the oil before bed every night. I can sleep through the night for up to 6 hours with out getting up to go to the bathroom. Note: I drink a 10 cup pot of green tea before bed every night while watching TV. It seems to have calmed my bladder so I am able to make it to the bathroom during the day as well. I still use the pads if I go out but I have not had an uncontrollable accident since I started.
I am almost done with my last bottle of CBD and will take a break from it to see what happens. I initially tried CBD to see if it would help with sleep.
I have wondered about THC but do not like the feeling of being high. I am aware that there are different strains and strengths though. All the experimentation I'd have to do again is daunting.How long did it take you to get to where you have a set dose?
My friend swears by CBDs with THC, but then,I do not have any pain like she does.
Hi Falalala I don't like the high either so that is why I never heat the oil. Without heat there is no high, no matter how much THC is in the bud, I have found. Because I grow my own from seed I never knew how strong it was. My grandsons would test the bud for me (they are in college). I found the more hemp looking the plant the better it worked for me (the less my grandsons liked it). I tried smoking it but the high was very weak and short lived. I have used some untrimmed AC/DC strain that worked in the oil. I think the trick is to get the small untrimmed buds because they are cheap and they have more of the leaf material.
I tend to dribble until I get there but sometimes when I lay my eyes on the toilet it just lets loose. It sure is annoying. Then last year when my 3rd auto-immune hit me (colagenous colitis) that was SO much worse! I had water-poo going up to 17-20 times a day. Thank God that seems to be under control now. I lost 20 pounds in 1 1/2 weeks!!!
Botox injections in the bladder really do work wonders. She who must be obeyed has gone from 5 a night to 1 or 2 a day. As for bowel, depends are your friend.
I figured out the pad n depend when I 1st started wearing depends. The only problem I have is sometimes they both end up wet .
I won't lie I have had moments where I didn't want 2 walk 2 the btrm cuz I would have fix the toilet or there were no covers so I would just go n change the pad or the btrm was soooo nasty
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Had MRI today and received call from Dr. soon after receiving results
Bladder Issues
Considering a suprapubic catheter
Update on So sick and tired.
