Well This Is Embarrassing

[morgan617]

Just thought I'd get it out of the way before we even get started. I have been in a pretty steady decline over the last year. Not posting so much and stuff. I have a lot of trouble with vision and perception and it's difficult. My balance has become very scary, cognitive stuff horrid. My BP has gone from very very high to so low, I can barely function, and now I have started peeing the bed.

I'm not talking about a cough and a bit of stress incontinence here. I'm talking about waking up, with urine pouring out of my bladder. I typically have major problems getting my bladder emptied, stopping and starting like some old poop with a 10 times it's normal sized prostate, and now I'm worse than my 3 year old grand daughter. I guess it's a good thing I have no deep sleep or I'd flood us out of the bed, as I wake up in the middle of it.

Just when I think it can't get anymore humiliating.....I am really starting to look at Shy Drager here, but am guessing until I drop dead, no one else will. I've already got the pacer, and every other symptom. The only person that knows this is my husband, and now of course, a million people I've never met, but good criminy, do we ever run out of symptoms??? At least during the day, I don't pee myself yet, but my frequency has been so bad, we've had to stop so I can go on the side of the road, because I can't hold it. Then it's a stop and start. And it's after I go that I'm incontinent, not when my bladder is full, except when I'm asleep. It's all backwards.

I am just so tired. After my sleep study disaster, I will keep this to myself, except for the entire internet world of dinet. I just needed to vent. I seem to need that more and more, as my body fails more and more and while doctors go, oh well, whadda ya want me to do about it, it's NORMAL.....sigh...sorry wetwillymorgan

[bellaluna]

Oh morgan- I'm sorry to hear about this... I know it must be difficult for you. Is it possible that you might have an infection? The only reason I ask is because you say the problem is not when your bladder is full.

Sending you big cyber HUGS.

Mary

[sarct]

I am so sorry. I don't really know what to say, but just wanted to tell you I am sorry about your decline. I wish something could be done for you.

[morgan617]

Mary,

No infection, I've only had one in my life, and blood poured out then. No symptoms at all of infection....but thanks guys...morgan

[Sunfish]

you're probably going to want to slap me here (you have my full permission), but dare i say that your post made me feel good b/c it was something that hit home with me? i know it's pathetic, and a bit uncouth at your expense, but it's rare for things i'm dealing with these days to come up on the forum b/c (thankfully) not many others are dealing with the same sorts of things. so...sorry you're dealing with this of course, but thanks for letting me have a "me too" moment.

and then i'm going to be bold and say somehting else to tempt you to slap me (if you haven't virtually done so already ). dare i say that i'm a tad bit jealous?? bare with me here. it's only that i've been dealing with fecal intcontinance for a bit now to varying degrees, and if i had to choose i'd take the bladder side of the incontinance problem any day as - on the unpleasantness scale - it seems a bit less gross to me. but i'm not for a second saying that either is nice. quick frankly they both stink (pun not intended, but fully appreciated after-the-fact!)

my bladder actually can't empty without being cathed and i'll be honest that i'd much prefer that to having the incontinance deal b/c, while it has it's own issues, at least it's not as messy! nevermind that there are a million and one products designed for urinary incontinance issues and - i'm not kidding - hardly anything for what i'm looking for. obviously some are interchangeable, but nice way to make someone feel even more isolated, eh? have NOTHING available that's marketed for your need!!!

on that note, though, i could probably write an essay right now on the various types of "protective undergarments" available so feel free to pick my brain for any suggestions (and where to find some good coupons/ sales). i've been trying a few different things out in recent months so can add some of my own commentary, though having a slightly different need only some of my thoughts would likely be helpful to you. there are way too many options to choose from and while it's rotten to need any of them in the first place, some are definitely better than others. and wearing them is lightyears more pleasant than the alternative (me needing to be hosed down & everything on & around me a complete mess), not to mention much more sanitary. too bad they don't make adult products that are a bit more fashion-forward (am i really using that phrase while writing about what are essentially adult diapers?!), but i'm serious! at least a color other than diaper white? like the kids's colored pull-ups or something?? ah well. back to something that matters a bit, i know you're pretty tiny these days yourself morgan, so FYI i've had problems with even the smallest size of some products being too big for me, which i'm sure you can imagine can lead to problems. i'm by no means large, but i'm not super tiny either...sort of on the smaller side of average i suppose? but anywho...my doc thought perhaps large kids' products might work for me but the mass-marketed kids items are toddler-sized & thus way too small; i did find some youth sizes online that are designed for older children (who need them due to disabilities) but in the meantime have actually found some adult smalls that fit me okay so i'm trying two varieties of those out at the moment. and hoping that i don't develop a skin reaction to any of the elastic/ plastics involved as i have a tendency to do just that with just about anything i use on a regular basis as i certainly don't need to add rashes & blisters to the mix!

you really do have my empathies, sympathies, & anything else i might lend. i'm not exaggerating when i say that the fecal incontinance development/ progression tops my list in terms of one of the most difficult, horrendous, humbling, humiliating, embarassing things i've had to deal with as my health has declined. waking up covered with **** & not even being able to clean everything up on my own accord, including at times myself (at times when i've been in the hospital) is a level of modesty & humbling that i'm not sure i'll ever be able to embrace. and i will forever be grateful for the nurses/ techs who really go out of their way to make me feel like they don't hate the clean-up as much as i do (regardless of how they actually feel); it's horrible enough in the first place without having nurses/techs who accentuate it to the extreme by voicing their displeasure, ya know? but i digress (again...) i never thought that i'd miss my severe constipation and/or the frequent diarrhea that would wake me up throughout the night, but i'd take either gladly over what's going on (or rather not going on) with my body now. i'm thankful that i'm only dealing with one of my bodily functions not staying put as it's supposed to and hope that that remains the case for you as well.

at this point i too have problems primarily at night. the problem started for me about two years ago but initially was very rare and/or happened during other acute situations (serious infection/ sepsis, antibiotic usage, etc) but now is almost a guarantee overnight regardless of what else is going on with me health-wise. i have a bit of leakage during the day on occasion and problems at times if i can't get to the toilet immediately and/or have acute illnesses/ antibiotics in my system, but when i'm awake i do usually have a bit of a warning (even if i then can't control what's to come) such that when i'm home, which is certiainly most of the time, i can usually manage decently. if i am out it's much safer for me to at least wear a bit of protection, i.e. a pad of some sort. i'm hoping i won't have to progress to the full diaper look 24/7 but realize that it's not unlikely to happen at some point so perhaps should start petitioning victoria's secret (or at least jockey or hanes?!) to some up with something more fashionable!!!

i do know that i have - for the most part at least - a more supportive doctor set-up than you do, morgan, but know that i'm not getting much help/ empathy with this either. my docs don't ignore/ dismiss that it's a problem and sort of give a nod to it being another realm of my systemic deterioration/ progression, but there's nothing to really do about it either so aside to my making sure they remember it's an issue so that it can be included on the appropriate paperwork that ensures i can keep paying my bills there's really no point in discussion/ exploring it further. for me - though i realize we're sort of dealing with different specific issues - there isn't anything to do that won't hurt other issues to the point that they're off-the-table.

my apologies to those for whom my post seems a bit over the top in the inappropriate humor department; i'm hoping that those who know me a bit better (that hopefully includes you morgan ) realize that it's a dark humor developed from dealing with things that would cause many to crawl into a cave, one of those "laugh to keep from crying" scenarios.

and morgan sorry that my initial empathizing became more of my own vent. but thanks for hearing me out all the same.

now i REALLY need to try to sleep b/c i have to leave for an appt in less than 8 hours. it will not be pretty

melissa

[Guest tearose]

I too understand and feel your frustration. I am very sorry you have another loss to deal with.

When trying to figure what to do, I visited the Depends website. They actually were more informative than I expected. I learned management tools that make my elimination process a smidge more predictable. You may get some survival/adaptive ideas there.

If it helps, before you check into the old age home, take a look at what you are eating and drinking again. I am now sensitive to equal and spice and cranberry juice for a long time irritated my bladder. These things makes me both retain without realizing and also feel like I have to go when I can't.

I do hope you can manage better soon. As for the embarrassing feeling, I am sending you loads of self confidence and reminding you that you are more than your symptoms. No one else makes us feel badly, we allow ourselves to feel that way. After you grieve for this loss, please know that those who love you will be there for you.

Oh, do you know if you have any pelvic prolapse issues? I do and I'm working with a urogyn and colo-rectal doctors to figure it all out.

best regards,

tearose

[morgan617]

Melissa, really you crack me up! The pathetic thing here is, I was a nurse forever and it never bothered me to clean up people, I knew it was really embarrassing for them, but as a nurse, it was like giving a back rub or something. You know, not gross or anything. I always tried to let people know ( I can remember one man in particular, who actually coded and we got him back and he was more embarrassed that he'd wet himself than that he'd almost died, so I did everything to protect that from all the people in the room)

Then it happens to me and it's the fricken end of the world. What a hypocrite. I certainly don't do it on purpose, but I swear, I can be barfing my head off so hard the neighbors can hear and Dave is blissfully sleeping away, and just let me pee the bed and he's awake, asking what's going on????

I haven't been to a gyn in over a year tearose, but have never had a cystocele before. Since I have so much control during the day, I don't think it's related to that and my diet hasn't changed at all. It's as boring and bland as you can get. It just bothers me that I have just emptied my bladder and then it's just running down my legs while washing my hands, it's like..whutt the???? I mean, no feeling of having to go, or that I have even leaked, it's just there.

I do hear you Missy...Of the two, I guess I'm glad it's number one, but did have a bit of a slip with number two also, so am wondering how far behind that is...get it??? behind...hehhehheh.

Right now I am using big old maternity type pads, not used to all that chafing, as I had a hyst in 86 and haven't used them for a long time. I'm with you Missy girl, they could at least put a princess on the butt or something.

You are right, of course, sometimes you have to laugh, just so you won't cry your eyes out......morgan (I'll look into the site tearose, thanks)

[Ernie]

Hi,

When I was at my worst I had both incontinence. I was so embarassed that I never talked to anyone about it, not even my doctor. It stopped when I started to take the K+. Then I told my doctor what the K+ was helping for. He was so surprised that I had never told him.

[Maxine]

I'm sorry your dealing with this Morgan. Something isn't right, and someone better help you!

Bladder problems can come with dysautonomia, but it's usually like Melissa's problem with urine retention.

I know folks with chiari/chiari related conditions can have urine retention, and need to catheterize. Compressin on the brain stem can cause this. My brain stem compression comes periodically with activity because of the instability at cervical/cranial junction, small posterior fossa, and promenant right vertebral artery. The doctor from NIH study told me to lay down several times a day to allow my bladder to work better, as I retain urine also. Constipation can also cause urine retention, and the full bowels get in the way of the bladder, and I have pretty severe issues with that---

Hopefully, you can find a temporary fix for this----(some kind of protection), but I sincerely hope you can find more help medically to get you in a better place. What the heck----I wish some kind of doctor would help you---

Melissa, I had fecal incontinence happen once, and it scared the you know what out of me. I did not feel it coming---

I chalked it up to a one time occurance, and never spoke about it to anyone. I was having a pretty bad morning that day, and just figured I was focused on my other symptoms an not paying attention. I had been constipated, and just figured it was because of that. What scared me, is that I didn't feel it. I can only imagine what it must be like for you Melissa.

Morgan, I wish there was more I could do-----------

Big HUG

Maxine :0)

[Rosie]

Hi Morgan...

Please have a look at Sleep Enuresis. You already know that your sleep pattern is not normal. This may be something that could be addressed with a GOOD Sleep Specialist.

My best to you.

[corina]

morgan (and everyone else who is having these problems!) i am so sorry. this is humiliating and embarassing. i even feel lucky that i only do this during the day, both the urinating and the fecal. i mean lucky because i can go to the bathroom and clean myself (but it takes so much energy to do so). it comes and goes and comes and goes . . . . i do not know why. and i do not understand. i just hate it. for all of us. when i told my family doc he felt sorry and understood how embarrased i was even telling him. it did make me feel better to know that he cared. i hope it helps you as well, to know that you're not alone and how we all understand you!

i will definitely try the k+ that ernie was talking about. who knows, it might help me as well!!!

thinking of you morgan and let's try to keep our spirits up (and the pads of course )

corina

[flop]

Hi Morgan, I think you've just brought to the surface a problem that more than one of us has been "keeping quiet" about! I luckily don't deal with the daily major leaks that people have described, but I also know that I am not fully in control of either urine or faeces. My worst experience was sitting in starbucks one day and suddenly realising that my bowels had decided that diarrhoea without warning was ok!

I've admitted the urine problem to one doctor when specifically asked (it isn't the sort of topic that is easy to bring up is it?) - he thinks that my urinary problems are related to my EDS, not being able to control the bladder if it is more than a little full. I manage this during the day by religiously going to the loo to empty my bladder every 2 hours so there isn't so much there to leak out.

It sounds like your problems might be more to do with bladder sensation and not being able to fully empty your bladder when you do go to the loo. It would be interesting to get a bladder volume scan after urinating to see how much residual urine you have. If that is the problem then regular self cathing to fully empty your bladder may help avoid incontinence problems.

Night time urination is a bit harder to deal with. Either need to set an alarm to "toilet" yourself (not really a good plan when you have such poor sleep to start with) or balance your fluid intake so that most of your drinking is done before the evening so you produce less urine overnight. I usually have a fluid load at 6pm then just have small amounts of fluids after that. I do have to take a big bottle of water to bed so that I can fluid load in the morning before getting out of bed.

Flop

[ajw4790]

I am sorry this has happened. I hope that with fluid modifications or other modifications you can find at least some relief. I too think that may others out there may have these forms of issues and not feel comfortable posting them. I think that it was great and I am sure helpful to others to know they are not the only one. I wish I had some bright ideas etc. on this topic, but don't really. I have really not had anything along these lines to know of any suggestions, and it is definitly not something to look forward to.

The only thing I guess I can think of is the urinary type meds like Detrol, and if any of these would help these problems?

[MomtoGiuliana]

I just want to voice my support to you as you manage this new challenge--which knowing you (via DINET) will be faced with your usual grace and humor. So many medical challenges are emotional as well as physical. I am so sorry you are dealing with this on top of everything else.

[Maggy]

Hi Morgan

As said by others well done for bringing this post to the surface, it takes a lot of courage and between youself and melissa you could keep most people entertained for life with your funny sense of humour coming through in to your writing on a very sensitive subject, but as said before if you cant laugh about things you will cry.

I am sorry you all are dealing with this i have also been like this for the last 8 months or so but i have a permenent catheter for urine retention with a flip valve, so again i can also just flood the place if i forget to go.

The problem is that i have not had for a while, any sensation of the need to pass urine and so leak quite often.

Solutions are 1; Have a sense of humour, which you definately all have, it does cheer me up to read your posts (sorry,doesn't sound very sympathetic)

2. Rule out infection (already done)

3. Try medication ? Dessmopressin? i'm sure you already have.

4. Like Melissa has pointed out already there are plenty of pads, but it was something i did not want to use until my last resort. OR

5. Encourage your dog to sleep on your bed between you and your partner and blame it on the Dog .

Sorry i have nothing encouraging to add other than you are coping really well considering the lack of support you get from the medical field, you must be a very strong person , keep it up.

Take care

Maggy.

[morgan617]

Thanks for all the support everyone! It was very sweet. And helpful to know I'm not alone.

Actually, Maggy, one of my completely housebroken dogs did pee on the bed the same night! Sympathetic enuresis, I guess. Aren't pets great...

I have realized this is just another thing to deal with and I will. I have tried meds in the past, not for incontinence, but interstitial cystitis, and it was worse than the illness, which is typically the case for me. Pads are my new best friend, however, I believe this has made my sleep even worse, as I wake up even more easily.

You know those dreams where you are naked in public? Well, I'm just a weeing along, but I wake up so quickly, it's like I've been shocked or something. I mean instant wide awake and they say that if you are in a deep sleep, which is when you expect this to happen, it's very difficult to wake up. It's just that "bladder isn't that full and no urge to go when it happens" thing. I have had residuals done in the past, when I subjected myself to the horror of urethral dilation, and I have never been a retainer. It sounds like I'm talking about an orthodontic problem now.....

So now I have become a hypervigilant, refuse to pee the bed sleeper, which makes me even more exhausted. Oh what a world, what a world...but instead of melting from water being thrown on me, I'm smelling funny from urine escaping from me.

Maybe I'll work on inventing Morgana's Secret, wetting the bed underoos.... won't be thongs I guess, but then I wouldn't wear those buggers anyhoo bad enough to wear gargantuan pads let alone having them stuck in the "middle" of your "cheeks" so to speak....... yeah, that's the ticket, I'll keep you all informed.... morgan

[Sophia3]

Sorry about the bladder issue, morgan. Cripes...you gotta be one step away from a rubber room.

Hope things improve or you get some answers.

[Kitsakatsa]

Your body has 2 types of bladder sphincters (tightened tubual exits). One is the internal one, and one is the external one. The internal one opens and that tells you that you need to starting thinking about the bathroom some time in the near future. The external one is the final release valve that is the point of no return. For people with nervous system damage, the internal sphincter is often too loose and without any muscle tone. This is because it is controlled by factors of the Vagus nerve. So, those of us with POTS find ourselves with 0.01 seconds to find a bathroom and get there. There simply is not a good notification system. This is similar to new moms etc. Also, we tend to drink water in spurts (lots of water....no water...lots of water) depending on signals that we are receiving from our blood pressure and autonomic system. So, it follows the logic that when sleeping- you will have little to no control. Add to this the meds that many of us are taking and some of the sedative properties of those meds. It is beyond our control- literally.

I have determined that the hottest chics in the world wear depends (me, included!). "Hey baby, take me anywhere...Disneyland...Airport...I am completely contained!!!"