Perhaps not a very bright future for me atm. :-(

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Grannyweatherwax

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I went for my appointment at the joint continence clinic on Tuesday last week. (Both faecal and urinary consultants working together and running the clinic together)

His interpretation of the results of the testing that they performed before Christmas were actually incorrect, due to excessive nerve damage/deadness.

During the actual test, when she put the balloon thingy in my back passage, she inflated it to 280 (don't know what it is measured in) before I had any sensation of something in my back passage, the consultant, on Tuesday, said that a normal person would feel a strong urge to empty their bowels at around 60. (something) Even that much over the norm, I only had a mild sensation that I needed to go, it actually felt more like a little fart was coming out. (Based on comparing with the level of sensation prior to being poorly, I have NO idea when I am going to fart any more so that in itself can be embarrassing!)

So the results of this test made my consultant think I had a rather large distended (? Is that the right word, I can't remember what he said, and I'm stuck for which word I need, basically he thought it was very large and round like a football (but no so big as a football!)) rectum. After examination on Tuesday, (bleugh, just bleugh!) he realised that my insides were normal and that the nerves were at fault.

He is sending me for more testing, he said something about doing xrays of my back passage, so I presume that will entail them pumping something in, from which end I have no idea. *insert scared face*

He said that based on what we have found out so far, the only solution they could think of would be a colostomy bag and he asked me how I felt about that, I said I was willing to do ANYTHING to not crap myself any more, and to be able to go out, without worrying about WHEN my bowels are going to cause an embarrassing accident. At present I leave the house once in a GREEN moon, (probably no such thing, I'm just trying to show a scale of rarity) and then only for medical appointments. He said that they would do their best to find a better solution than that, but I would *HAVE* to have one fitted in the perhaps not so distant future anyway. :(

On the urinary side, my consultant has prescribed me vesicare again in an attempt to calm my bladder down and stop it from pushing the catheters out so often. (Longest I have kept one in so far is 3 weeks) He also prescribed Buscapen (sp?) to try and stop the bladder spasms. He also requested that I increase the size of catheter to hopefully prevent the bypassing so much. They want me to try 14ch instead of 12ch, and even go up to 16ch if 14ch makes no difference.

He also suggested I consider a suprapubic catheter instead, I said "unless they could stitch me up so I don't leak from my urethra" that it was not an option, I was half joking when I said it and he replied that it was actually an option, should I wish to change to suprapubic… (?really?!)

Just got to wait for the xray testing in Stoke Hospital now, then they will decide how to go from there.

On the side of not soiling ever again, the future is acceptable should I opt for a colostomy… but the thought of *having* to have one in the future scares me somewhat.

What do you guys think of colostomy bags? :/
 

gigglemuffinz

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I tried to do some research on this stuff just so I could try to be of some sort of help here but to be honest I'm still confused so please forgive me if I come across as ignorant. I don't want you to think of your future as not very bright, and I really wish you all the best. Maybe I don't really have a place to say, and I probably didn't do as much research as I could.. but I don't think there is anything undignified at all about a colostomy bag at all. The concept of any surgery scares me so in that way I can understand the fear of a colostomy, though it does sound like there are some different emotions that I'm not picking up on as to why you are afraid. I'm guessing the necessity of it, feeling like it's your only option?

I really do wish I could be of more help here, and I really wanted to wish you luck with this and know that even if I don't understand fully your situation.. that I'm rooting for you. I hope my post isn't bothersome in anyway. :(
 

Grannyweatherwax

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I tried to do some research on this stuff just so I could try to be of some sort of help here but to be honest I'm still confused so please forgive me if I come across as ignorant. I don't want you to think of your future as not very bright, and I really wish you all the best. Maybe I don't really have a place to say, and I probably didn't do as much research as I could.. but I don't think there is anything undignified at all about a colostomy bag at all. The concept of any surgery scares me so in that way I can understand the fear of a colostomy, though it does sound like there are some different emotions that I'm not picking up on as to why you are afraid. I'm guessing the necessity of it, feeling like it's your only option?

I really do wish I could be of more help here, and I really wanted to wish you luck with this and know that even if I don't understand fully your situation.. that I'm rooting for you. I hope my post isn't bothersome in anyway. :(

Hi Sweetie,

Thank you very much for your reply, your post is not bothersome in the slightest *hugs*

I am not afraid as such, just I feel a bit like a lost cause. They said that I would need one eventually anyway, it is just the stone cold reality that my nerves are probably not going to get any better, but most probably worse over time. :( so yes, feeling as if there is no other option (other than to poop myself, which for me is NOT an option) it is rather daunting. :(

However, I have to retain my upbeat and positive attitude…

On the bright side, I can always mail the used bags to people who upset me lol :)
 

gigglemuffinz

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Hi Sweetie,

Thank you very much for your reply, your post is not bothersome in the slightest *hugs*

I am not afraid as such, just I feel a bit like a lost cause. They said that I would need one eventually anyway, it is just the stone cold reality that my nerves are probably not going to get any better, but most probably worse over time. :( so yes, feeling as if there is no other option (other than to poop myself, which for me is NOT an option) it is rather daunting. :(

However, I have to retain my upbeat and positive attitude…

On the bright side, I can always mail the used bags to people who upset me lol :)

Well, from what I can tell you are an amazing person, and nothing is going to change that. I can totally understand why that situation would be daunting, but I think it's so strong of you to remain upbeat and positive about and even throw in a funny joke. :)

Keep on being amazing! Thanks for being really nice to me. I was sort of nervous about posting but I'm glad I did.
 

dogboy

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First, let me say that I'm so sorry all of this has come down upon you. I have a friend who has a colostomy bag because of colon cancer. She learned to live with it quickly, as she at least survived cancer. She did have times when the bag overfilled, making a mess, so you have to be careful to empty it before that happens. It's still probably a better alternative to messing one's diapers and not being able to go out in public.

Eight years ago, my wife, who is diabetic, had the bones in her foot collapse and then get infected with MRSA. For six years, I did wound care on her. During that period, she had many operations, before the foot finally healed. For most of that time, she got around riding on her electric cart. In other situations, I pushed her in a wheel chair. We both had to make big adjustments. Over night we went from a normal couple, able to go wherever and whenever we wanted, to that couple with the wife in a wheel chair. I've written about it in my novel. It was a very difficult adjustment.

We were forced into a situation where we had to reassess life, and make the best of our situation. Getting out was better than her staying home in bed or sitting in a chair. Restaurants learned who we were. She rode her cart through department stores. We even went out on the bike/walking trail, she riding and me walking along side her.

Life goes on, and if you can resume an almost normal life, where you can go to the store, a restaurant, a baseball game and not have to worry about running to some place to change, I think it's a plus. Life has to go on, so don't give in to the stumbling blocks that get thrown in our way. When you get your bag, pump your fist into the air and say you have won.
 

askmelater47

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As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.
 

Grannyweatherwax

Est. Contributor
Messages
542
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  1. Incontinent
As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.

Pmsl! I am up for revenge! ;)
 

jdinvirginia

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  1. Incontinent
CaptainVimes,

Hi, I'm JD and I suffer from moderate bowel incontinence due to an old accident that left me with severely damaged nerves in my anus and rectum. I lost most of my ability to sense an approaching bowel movement, as well as much of my sphincter control. I also have a defecation order and cannot pass a large, firm stool (or balloon). You and I seem to be sharing somewhat similar problems.

I have been through all of the usual diagnostic tests at a specialty incontinence clinic at a major research hospital, plus follow-up physical therapy to strengthen my pelvic floor.

That being said, I have things under reasonable control (not perfect, but reasonable). My gastroenterologist said that he never has seen anyone succeed so well at controlling fecal incontinence. My solution was not surgery.

With the approval of my doctors, I self-administer preventive enemas each morning to prevent a bowel accident later in the day. Don't laugh - they work. These are traditional saline and soap bag enemas, not chemical Fleets.

After the enemas, I can go about my normal life during a 12 - 14 hour safe zone. I am able to achieve 96-97% accident-free days, which is an excellent outcome. I even go on extensive international travel, taking my enema kit with me, of course. I recently came back from a very long cruise from Istanbul back to the States. I had no accidents during a 35-day period!

I do wear a diaper 24/7. However, on most days I will not have messed in it.

Do NOT rush to have surgery! Consider my option and discuss it with your doctor. A colostomy bag is not a pleasant long-term outcome and should be avoided if possible. Please note that, if you try the preventive enemas and they do not work well for you, you can still have the surgery later.

I have written a serious paper on the use of preventive enemas to control fecal incontinence. My gastroenterologist's Physician's Apprentice has reviewed it and was very complimentary. A doctor of internal medicine is reviewing it now. It is both very informative and will serve to stimulate a dialog with your physician on the topic. One of my doctors has recommended that I publish it. If you have an interest in reading the paper, send me a private message with your email address and I can either email it to you or provide a link to a copy on DropBox.

Best wishes,
--JD
 

Grannyweatherwax

Est. Contributor
Messages
542
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  1. Incontinent
First, let me say that I'm so sorry all of this has come down upon you. I have a friend who has a colostomy bag because of colon cancer. She learned to live with it quickly, as she at least survived cancer. She did have times when the bag overfilled, making a mess, so you have to be careful to empty it before that happens. It's still probably a better alternative to messing one's diapers and not being able to go out in public.

Eight years ago, my wife, who is diabetic, had the bones in her foot collapse and then get infected with MRSA. For six years, I did wound care on her. During that period, she had many operations, before the foot finally healed. For most of that time, she got around riding on her electric cart. In other situations, I pushed her in a wheel chair. We both had to make big adjustments. Over night we went from a normal couple, able to go wherever and whenever we wanted, to that couple with the wife in a wheel chair. I've written about it in my novel. It was a very difficult adjustment.

We were forced into a situation where we had to reassess life, and make the best of our situation. Getting out was better than her staying home in bed or sitting in a chair. Restaurants learned who we were. She rode her cart through department stores. We even went out on the bike/walking trail, she riding and me walking along side her.

Life goes on, and if you can resume an almost normal life, where you can go to the store, a restaurant, a baseball game and not have to worry about running to some place to change, I think it's a plus. Life has to go on, so don't give in to the stumbling blocks that get thrown in our way. When you get your bag, pump your fist into the air and say you have won.

Hey,

Thank you so much for your comforting and supportive reply, with us having to empty my leg bag frequently, I could always work on a process of us doing them both at the same time I guess.

We also went through pretty much the same scenario with myself, on the day things hit the fan, we had just completed the kids' christmas shopping, a week before Christmas 2006, my bad leg (at the time I just had a very bad knee from an accident at work in the Aug of '05) gave way quite a bit even in my metal brace when we were walking back to the car, I suddenly felt very tired when we got home so I went for a nap, when I awoke I literally couldn't walk or talk, it was as if I had a stroke, completely slurring all my words, in my head it felt as if everything was going in slow motion, apparently I was talkingand moving like that too. Things just got gradually worse from that day onwards, until I am at my current state now.

My whole life as I knew it, destroyed in one innocent couple of hour nap in an afternoon. :(

I have a wheelchair out of the house, but I cannot self propel so Simon has to push me everywhere. We tried a mobility scooter and I was a danger to everyone within 10m of me, and to myself, i nearly wiped out 3 aisles in a supermarket, it is just something I cannot do.

If I had known back when it was "just a dodgy knee" that I would have to write off my entire independence etc within a few months, I would have insisted we had gone to the beach more often, I would have enjoyed our walks along the disused railway line and canal (whilst the children were at school) even more. I would have spent more time chasing my children around the garden and sitting down to play with them more often… I would have made the most of being able to "hobble" around and actually do things for myself…

However, I do not look back in regret, nor look forward in remorse, (is that the right word?) I am happy that I did get to do everything I did do, and that I still have my family, my beautiful children, my amazing life to remember, to think about when struggling through my darkest days. :)

At least I am not dying faster than old age is creeping in, right? Yes! right! :) *imagines herself throwing both fists in the air chanting "I WILL beat this!"* :D

Thank you again Dogboy. *hugs*
 

Grannyweatherwax

Est. Contributor
Messages
542
Role
  1. Incontinent
As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.

So, I would get to do some horrendous eye watering and nasal hair singing farts on demand, quite literally on tap?! THAT will be useful in stuffy waiting rooms hahah ;)

Incidentally, how often is gas release required? :) sorry, I will try to sound more serious when genuinely enquiring, instead of sounding vindictive and playful.
 

oscar

Yawn!
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Hi have you ventured onto the B&BF website lot's of help/info there is also there other website the 21ccp.org which is about catheters and help.
There's the i think from coloplast? systeen? or try in search bar for it. which is an enema kit you take with you as not big and self contained so irrigates the lower bowel.
There's much help out there.
For Foley catheters normally woman go with lower FR than men and shorter length but i'd go with 40cm same as men as the end is further away from body so less infection risk.
I would go with one like the Bard bio-cath or the Rusch that's similar there latex with hydrophilic coating very supple/soft so less irritation in bladder and infection risk many uro clinics use bio-caths but do you use with a valve? also a bag?.
I will wait for your reply as like poster above ive done some researching/testing with things and Don't follow there chat now as many are just covering there bums with out of date info.

The way i work it when living with a catheter is using the bio-cath in 16fr i ALWAYS use with a valve either the bard flip flo or similar didn't get on with the Manfred sauer one as lever to fiddly for me(but could send you one or ask for sample i can give you place to look)having a valve means A you can use on own without bags as thats end of sealed system.B you have choice of day or night bag so don't have to wear leg bag at night.C which is the most important it lets bladder work correctly as it fills and you empty as opposed to constant drain which gives more infections/trauma as bladder walls collapse round drain eyes which gives you spasms/pain also try to slow flow down before empty so less syphoning which is one bad thing you get where end/leg/night bag is below bladder height low bag worse it gets same as removing plug from bath try with hand over hole then you will see what does to bladder insides.
I for daytimes go with a Rusch belly bag holds a liter sits like it say's round front so same height as bladder then it pushes urine out it's self so bladder keeps it's tone Belly bags a win win really work well very comfortable last a month i rinse through each time remove in hot water can use salt or tiny amount of milton once in a while and hang to dry in bathroom they do one esp for wheelchair users with longer outlet tube but for me found if i can keep on top of bladder bowels become more manageable well less risk?

Keep fluid up i drink whatever but lots of it i don't worry so much about emptying bladder fully but to have urine constantly changing as with one you will never empty fully when i do get an irritation i drink lot's put on night bag 2liter then open valve and go to sleep or try to? then next day is normally ok one thing you can do which i do is at first leave valve closed then if need to go open it then leave open but hang bag mattress height so bladder pushes out these are things ive been working on well some of them.
I insert/change my own as if doing yourself lessens infection risk massively as only your bacteria there!.even inco nurse said good.

But one thing very IMPORTANT stay away from fizzy drinks esp cola's and NEVER have anything with artificial sweeteners as a real no no for diabetics also fizzy drinks etc leach calcium from bones as they upset stomach so body tries to counteract it and sweeteners effect pancreas which is where diabetes comes from it also effects rest of body my friend gets ill with bad stomach from them if drinks another one is MSG(mono-sodium glutamate) that will effect bowels as i get problems if have some ie Chinese where there using lots.So there's plenty of things we can do to keep on top of things.
I have lack of feel in bladder and bowels as can't many times initiate movement till it's ready then have to find loo now with bladder get nothing till it's need to go now could be little but mostly over 500mil or lot more then get terrible pan like want to double up if i try to keep hold if out and not using any means (wear pad pants mostly local) it will make me empty bowels and stomach contents if even what ive eaten hours before over course of few hours as just comes out like a mush every 10-20 mins they thought i had MS but im sure it's fibromyalgia some in family and same symptoms have all the signs but have a blind quack that's a dinosaur! (over 40) that gives you alot of bladder/bowel problems.
Also have reynauds think secondary as many things give you it from them which is circulation and everything is on the blood circuit(temp changes cause problems) along with pressure like lifts.

Many places never look wider than the bladder/bowel with them for men it's a fetish with prostrate women it's stress inco but not other things like illness unless MS if they get that far checking or disc damage along with like sacroiliac joints in pelvis as they cause a lot of problems as upset whole gait ive damage to right side from many incidents on that side but ask about it and there looking in the sky do have spine damage lower and in neck which effects hands but also neck is counter balance for lower spine many never realise that so have to find quacks that are more informed as many just live in the past as once qualified stay in that era.

so will leave you to get back and sent you a friends request and feel free to ask any questions and your in the UK same as me so know what options are like valves which aren't given unless by special means.
I have prescription for my items.

All the best Oscar

Ive had Vesicare and stopped taking it as didn't work and made my mouth bad and eyes really bad(side effect) but hospital gave me a new one to try Mirabegron Betmiga 50mg ask about that? does seem better i think but not always?
 

dogboy

Est. Contributor
Messages
22,163
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  1. Adult Baby
  2. Diaper Lover
Hey,

Thank you so much for your comforting and supportive reply, with us having to empty my leg bag frequently, I could always work on a process of us doing them both at the same time I guess.

We also went through pretty much the same scenario with myself, on the day things hit the fan, we had just completed the kids' christmas shopping, a week before Christmas 2006, my bad leg (at the time I just had a very bad knee from an accident at work in the Aug of '05) gave way quite a bit even in my metal brace when we were walking back to the car, I suddenly felt very tired when we got home so I went for a nap, when I awoke I literally couldn't walk or talk, it was as if I had a stroke, completely slurring all my words, in my head it felt as if everything was going in slow motion, apparently I was talkingand moving like that too. Things just got gradually worse from that day onwards, until I am at my current state now.

My whole life as I knew it, destroyed in one innocent couple of hour nap in an afternoon. :(

I have a wheelchair out of the house, but I cannot self propel so Simon has to push me everywhere. We tried a mobility scooter and I was a danger to everyone within 10m of me, and to myself, i nearly wiped out 3 aisles in a supermarket, it is just something I cannot do.

If I had known back when it was "just a dodgy knee" that I would have to write off my entire independence etc within a few months, I would have insisted we had gone to the beach more often, I would have enjoyed our walks along the disused railway line and canal (whilst the children were at school) even more. I would have spent more time chasing my children around the garden and sitting down to play with them more often… I would have made the most of being able to "hobble" around and actually do things for myself…

However, I do not look back in regret, nor look forward in remorse, (is that the right word?) I am happy that I did get to do everything I did do, and that I still have my family, my beautiful children, my amazing life to remember, to think about when struggling through my darkest days. :)

At least I am not dying faster than old age is creeping in, right? Yes! right! :) *imagines herself throwing both fists in the air chanting "I WILL beat this!"* :D

Thank you again Dogboy. *hugs*

That must have been a terribly frightening day. I know what you're saying about past and lost opportunities. My wife and I both love the beach. After I was struck by a car when I was 14, and after the long half year recovery, I embraced walking. I walked everywhere, to stores, home from school. I loved riding my bike, and still do. My wife's family has a cottage in northern Canada, 200 miles north of Toronto, and we used to walk the portages to a back lake to go fishing. All of that has ended for us as a couple.

I still ride my bike in the summer, and I walk around the block, but we can't do it as a couple. But we do the things that she can do, and that's better than nothing. I do wish you the best in all of this, and sincerely hope things improve.
 

Capybyra

Est. Contributor
Messages
71
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  1. Incontinent
  2. Other
Seconded on the preventative enemas! Details snipped to the relevant- If there's no mess down where it can leak out- it cannot leak out:>

Being serious- compared to major surgery and so on- using a simple enema as needed can restore confidence. I've had that need since pre-teens and only from about 15 on- did I take ful control over my guts. PM me if you need more info.
 

Grannyweatherwax

Est. Contributor
Messages
542
Role
  1. Incontinent
Seconded on the preventative enemas! Details snipped to the relevant- If there's no mess down where it can leak out- it cannot leak out:>

Being serious- compared to major surgery and so on- using a simple enema as needed can restore confidence. I've had that need since pre-teens and only from about 15 on- did I take ful control over my guts. PM me if you need more info.

Theres more chance of me getting miraculously better overnight than me being willing or able to stick something up my butt and wash it out :p

Not going into details but I have a history that prevents me from dealing with my back passage especially on an emotional level, I would rather die than be intruded.

Hi have you ventured onto the B&BF website lot's of help/info there is also there other website the 21ccp.org which is about catheters and help.
There's the i think from coloplast? systeen? or try in search bar for it. which is an enema kit you take with you as not big and self contained so irrigates the lower bowel.
There's much help out there.
For Foley catheters normally woman go with lower FR than men and shorter length but i'd go with 40cm same as men as the end is further away from body so less infection risk.
I would go with one like the Bard bio-cath or the Rusch that's similar there latex with hydrophilic coating very supple/soft so less irritation in bladder and infection risk many uro clinics use bio-caths but do you use with a valve? also a bag?.
I will wait for your reply as like poster above ive done some researching/testing with things and Don't follow there chat now as many are just covering there bums with out of date info.

The way i work it when living with a catheter is using the bio-cath in 16fr i ALWAYS use with a valve either the bard flip flo or similar didn't get on with the Manfred sauer one as lever to fiddly for me(but could send you one or ask for sample i can give you place to look)having a valve means A you can use on own without bags as thats end of sealed system.B you have choice of day or night bag so don't have to wear leg bag at night.C which is the most important it lets bladder work correctly as it fills and you empty as opposed to constant drain which gives more infections/trauma as bladder walls collapse round drain eyes which gives you spasms/pain also try to slow flow down before empty so less syphoning which is one bad thing you get where end/leg/night bag is below bladder height low bag worse it gets same as removing plug from bath try with hand over hole then you will see what does to bladder insides.
I for daytimes go with a Rusch belly bag holds a liter sits like it say's round front so same height as bladder then it pushes urine out it's self so bladder keeps it's tone Belly bags a win win really work well very comfortable last a month i rinse through each time remove in hot water can use salt or tiny amount of milton once in a while and hang to dry in bathroom they do one esp for wheelchair users with longer outlet tube but for me found if i can keep on top of bladder bowels become more manageable well less risk?

Keep fluid up i drink whatever but lots of it i don't worry so much about emptying bladder fully but to have urine constantly changing as with one you will never empty fully when i do get an irritation i drink lot's put on night bag 2liter then open valve and go to sleep or try to? then next day is normally ok one thing you can do which i do is at first leave valve closed then if need to go open it then leave open but hang bag mattress height so bladder pushes out these are things ive been working on well some of them.
I insert/change my own as if doing yourself lessens infection risk massively as only your bacteria there!.even inco nurse said good.

But one thing very IMPORTANT stay away from fizzy drinks esp cola's and NEVER have anything with artificial sweeteners as a real no no for diabetics also fizzy drinks etc leach calcium from bones as they upset stomach so body tries to counteract it and sweeteners effect pancreas which is where diabetes comes from it also effects rest of body my friend gets ill with bad stomach from them if drinks another one is MSG(mono-sodium glutamate) that will effect bowels as i get problems if have some ie Chinese where there using lots.So there's plenty of things we can do to keep on top of things.
I have lack of feel in bladder and bowels as can't many times initiate movement till it's ready then have to find loo now with bladder get nothing till it's need to go now could be little but mostly over 500mil or lot more then get terrible pan like want to double up if i try to keep hold if out and not using any means (wear pad pants mostly local) it will make me empty bowels and stomach contents if even what ive eaten hours before over course of few hours as just comes out like a mush every 10-20 mins they thought i had MS but im sure it's fibromyalgia some in family and same symptoms have all the signs but have a blind quack that's a dinosaur! (over 40) that gives you alot of bladder/bowel problems.
Also have reynauds think secondary as many things give you it from them which is circulation and everything is on the blood circuit(temp changes cause problems) along with pressure like lifts.

Many places never look wider than the bladder/bowel with them for men it's a fetish with prostrate women it's stress inco but not other things like illness unless MS if they get that far checking or disc damage along with like sacroiliac joints in pelvis as they cause a lot of problems as upset whole gait ive damage to right side from many incidents on that side but ask about it and there looking in the sky do have spine damage lower and in neck which effects hands but also neck is counter balance for lower spine many never realise that so have to find quacks that are more informed as many just live in the past as once qualified stay in that era.

so will leave you to get back and sent you a friends request and feel free to ask any questions and your in the UK same as me so know what options are like valves which aren't given unless by special means.
I have prescription for my items.

All the best Oscar

Ive had Vesicare and stopped taking it as didn't work and made my mouth bad and eyes really bad(side effect) but hospital gave me a new one to try Mirabegron Betmiga 50mg ask about that? does seem better i think but not always?

B&BF website? I tried to join 21ccp.org but my registration continually failed.

I don't actually need catheter advice, as I have settled down with the changes that my consultant suggested already. I also have a large "catheter kit". (lots of stock) I have to use male/std catheters as the female ones are just too short for my body set up. I tried the bard flip-flo valves, but I was having to empty too frequently, which is no good for my health, so consultant requested I swap to bags. I can't fit my own catheter due to physiological restrictions, and Simon (my fiancé and fulltime carer) really didn't want to have to try, he is always scared of hurting me.

I have a very good team of people fighting my corner with my continence health. :)

They did a lumbar puncture to test me for MS, and various MRI's on the spine, which showed that I have quite advanced degenrative disc disease, cervical and lumbar. They concluded that it was the degenerative disc disease that has killed my nerves related to urinary and faecal functions.

I don't drink fizzy drinks at all, I haven't for years. I don't have diabetes so I don't have to worry about things like that either.

I am back on the vesicare, apart from it playing silly games with my Meniere's disease and with my GORD, it seems to have calmed my bladder down a great deal.

I also suffer with fibromyalgia and ME, the latter reportedly often affects continence too.

I am waiting for the further testing on my bowel to find out what needs to happen next.
 
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oscar

Yawn!
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But you connect bag to valve? as leaving bladder on free drain A decreases size.B loses muscle tone.C gives you more infections/blockages and spasms and is sure very bad for your health.
I go lots/often but i manage ok
 

Grannyweatherwax

Est. Contributor
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But you connect bag to valve? as leaving bladder on free drain A decreases size.B loses muscle tone.C gives you more infections/blockages and spasms and is sure very bad for your health.
I go lots/often but i manage ok

I *have* to drain constantly because of my various personal health issues.

A. The bladder needed decreasing, it was stretched to over 800ml prior to catherisation. (Tested at hospital, they actually got to 800ml and stopped because they said it would be counterproductive to go further)

B. I will probably, 99% likely, never be able to sit on a toilet and void like normal people do again, so there is no point worrying about the actual state of my bladder after the catheter is removed, we are working on my quality of life now.

C. if it was THAT bad, they wouldn't provide leg bags to anyone, they would force everyone to use a valve all the time.

Apart from the first few weeks of being catheterised, I have no problems with infections etc, you are probably more prone to infections using the valve anyway, with a leg bag the catheter system is constantly sealed and sterile, and when emptying the leg bag, as long as the user practices good hygiene, there is minimal risk of infection. Whereas with the valve it is closer to a part of the body which is subject to more bacteria.

Also, with storing the urine in the bladder opposed to a leg bag, there's a chance of it tracking back to the kidneys if there's a problem and you cannot get to the toilet quick enough to release the build up...

I am relatively happy with my current set up anyway, I have absolutely no intention of changing it any time soon. (Apart from trasfering to a 14ch catheter instead of the treecurrent 12ch)

I have never had to deal with a blockage, I drink more than plenty so that my urine is very rarely concentrated. I am on medication to prevent my bladder from playing up whilst the catheter is insitu. :)

Thank you for your concerns but they are just not necessary.
 

Grannyweatherwax

Est. Contributor
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PS. I have to say I have been VERY offended by the post that Kid4ever posted in this very sensitive subject for me.

I know it was swiftly deleted, but I received a notification with the content and the image that he/she posted. I really hope it was an immediate ban. Did he/she just pick on me, or did he/she post his/her hatred elsewhere too? :(

I'm actually almost in tears here. :(

*sigh*
 

Trevor

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  3. Babyfur
PS. I have to say I have been VERY offended by the post that Kid4ever posted in this very sensitive subject for me.

I know it was swiftly deleted, but I received a notification with the content and the image that he/she posted. I really hope it was an immediate ban. Did he/she just pick on me, or did he/she post his/her hatred elsewhere too? :(

I'm actually almost in tears here. :(

*sigh*

This person was banned as a spammer and troll. I didn't happen to see the posts but it appears he was a minor disruption this afternoon. I can understand that it may be upsetting, but provoking a reaction is exactly what that sort of person is after and I suggest you pay such things no mind, other than to report them to the mods when they occur.
 

Strawberry

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I think.. *i could be wrong..it happens* that even with a colostomy you have to use an enema now and then to flush out that little bit of intestine still connected to the anus
 

Grannyweatherwax

Est. Contributor
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542
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I think.. *i could be wrong..it happens* that even with a colostomy you have to use an enema now and then to flush out that little bit of intestine still connected to the anus

It depends what type of colostomy they give you. The one that I would probably have is the one where they use the end of my colon and rectum to make the colostomy/stoma, so there'd be nothing left to do an enema on. ;)
 
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