Not feeling the need to go

[Pino]

- sphincterotomy

Hi Winterheart,

sphinctererotomy is a hard choice i think. At the moment i am working on the Biofeedback, next step would be Botox in the Detrusor + Cath and than the neurostimulator-test. The sphinctererotomy is not on the agenda right at the moment, but i do not have any problems with UTI until now.

I do not need catheter all the time, i had some problems when i took the Betmiga and Kentera at the same time, so i have got some here and for special occasions, like long car drives and for the clinic when i am not allowed to stand up. When lying on my back i will get a urinary retention, so i need a catheter than. I got both at the same time, by the way, the diaper and the catheters.

In the next weeks will have to choose, diapers or catheters, which one i prefer over the other. I am not sure yet.

With the Betmiga the pain got better, but it is still a big problem. We will see.

I do not think any doc would give me the choice for "deactivating" my sphincter at the moment, there is no danger for my kidneys, it is just the pain.

 

[winterheart01]

Hi Winterheart,

sphinctererotomy is a hard choice i think. At the moment i am working on the Biofeedback, next step would be Botox in the Detrusor + Cath and than the neurostimulator-test. The sphinctererotomy is not on the agenda right at the moment, but i do not have any problems with UTI until now.

I do not need catheter all the time, i had some problems when i took the Betmiga and Kentera at the same time, so i have got some here and for special occasions, like long car drives and for the clinic when i am not allowed to stand up. When lying on my back i will get a urinary retention, so i need a catheter than. I got both at the same time, by the way, the diaper and the catheters.

In the next weeks will have to choose, diapers or catheters, which one i prefer over the other. I am not sure yet.

With the Betmiga the pain got better, but it is still a big problem. We will see.

I do not think any doc would give me the choice for "deactivating" my sphincter at the moment, there is no danger for my kidneys, it is just the pain.

my kidneys were not in danger either but the pain was too much, residual bladder content was an ongoing issue and since botox, meds and even a small cut in the sphincter (a nerve) didn't work combined with the chronic infected tissue, well....i was left with those choices.
Though the sphincterotomy is something few hospitals would do, today they see it as a bad thing or last resort option but I really did not want to cause more scar tissue by catheterizing normally, this both urologists understood, and I also did not want to end up with a urostomy that could cause serious complications with healing etc because of my diabetes, so for me the choice was easy.
I must say I live a comfortable life now, I can do what I want without pain , just need to change in time and prevent excessive sweating.

 

[GeorgeG]

I have got OAB-Symptoms for about three years and Urge Incontinence due to a Neurogenic Bladder (UDM) for 11 month now.
Diagnose: Strong, painful urge at 120ml, Terminal Detrusor Overactivity at 250ml, Detrusor Sphincter Dysfunction (DSD). Classification CHESS A4.

I do not wet in my sleep, and since i take Betmiga in the evening i can sleep at least for 4 to 5 hours, did not chance the daily problems though.

Since three weeks i loose urine when bowing forward to relax my back pain without warning, that is brand new (and it scares me either).

I think the Nerve Damage can "develop", did you have an UDM?

That is so exciting, I mean for me. We have really similar symptoms.... Urgency from 140ml. No urgency whilst horizontal ( sleeping ok, but sometimes up multiple times). If I stretch upward ( reaching to shelf etc) or straighten my back and lean forward whilst seated, it might trigger urgency, after 140 ml.

 

[GeorgeG]

I’m kind of in the same boat, topped with stress incon and OAB. I wear a light pull-up to work so I can go when I need to. Sometimes strong urge with nothing but a few dribbles, sometimes almost no urge with full strong flow. I don’t get scared when this happens, but I sometimes get really frustrated. When not at work I give in and wear full diapers, I just go when I need to and not worry. It sounds counterproductive , but I think not stressing while in diapers helps my stress when in pull-ups, which in turn(sometimes) helps lessen my incon problems. Just my thoughts.

So you just use the nappy at work? Not fighting the urges? I did that today. But then I forget I needed the loo, until the next urge.

 

[BLtheDL]

So you just use the nappy at work? Not fighting the urges? I did that today. But then I forget I needed the loo, until the next urge.

No, I wear a pull-up at work to catch drips and just incase. I make it to the bathroom during the work day, but sometimes it stresses me out and makes leaks worse. I diaper up when out of work, even when diapered I sometimes still fight the urge, but still use the diaper.

I need the diapers at night because I wet every night.

 

[SeniorMan]

When changing my diaper, I will find myself peeing on the floor. I minimize that happening by getting the next diaper on promptly. Also, I have pooped without awareness, finding out by noticing I have a poo-filled diaper on. I must be diapered 24/7.

 

[Pino]

So you just use the nappy at work? Not fighting the urges? I did that today. But then I forget I needed the loo, until the next urge.

Happens so often to me - the result is a wet throusers most oft the time, the pants can only take one wetting for sure.

 

[Pino]

my kidneys were not in danger either but the pain was too much, residual bladder content was an ongoing issue and since botox, meds and even a small cut in the sphincter (a nerve) didn't work combined with the chronic infected tissue, well....i was left with those choices.
Though the sphincterotomy is something few hospitals would do, today they see it as a bad thing or last resort option but I really did not want to cause more scar tissue by catheterizing normally, this both urologists understood, and I also did not want to end up with a urostomy that could cause serious complications with healing etc because of my diabetes, so for me the choice was easy.
I must say I live a comfortable life now, I can do what I want without pain , just need to change in time and prevent excessive sweating.

About the pain and the constant urge i tried a permanent catheter by myself for one day, just to try it out, i felt like holidays.

Of course no doctor would recommend this, due to the infect risk.

It was a try as a solution for long cars drives, where i get a retention either.

So I can relate to your decision, but i cant talk to the docs about this right now and i have still got the hope to get better.

But when i am sure to be at home all day and my wife is out to work, i will choose a permanent catheter for a day again, it is just a great relief.

 

[MaxxH]

It's more just like sitting to standing and it happens. And older... well... I'm only 19. Have been IC since I was 12

i've been getting more of that as time goes on. I'm not incontinent, but often, when I get up in the morning, or get up after sitting for awhile that I get sudden intense urge. No accidents yet... but it has been close a few times.

It's kind of a fun thing if I happen to be wearing a diaper. Super annoying otherwise having to be aware of where a bathroom might be, or worse, hold it for an extended period while I find one. I wonder how much of it is physical vs "in my head". My love for diapers could be making me more aware of bladder pressure and urgency than "normal" people. I've noticed when I'm wearing that I'm less attuned to bladder pressure or urgency, knowing that I don't have to do anything about it.

FWIW, I am older. I have a couple of grandsons older than you.

For the record, I have no desire to be incontinent or to go 24/7. That would make me even more introverted and anti-social than I am already. That would be a bad thing.

 

[winterheart01]

About the pain and the constant urge i tried a permanent catheter by myself for one day, just to try it out, i felt like holidays.

Of course no doctor would recommend this, due to the infect risk.

It was a try as a solution for long cars drives, where i get a retention either.

So I can relate to your decision, but i cant talk to the docs about this right now and i have still got the hope to get better.

But when i am sure to be at home all day and my wife is out to work, i will choose a permanent catheter for a day again, it is just a great relief.

I had long term catheters for 4 monthss, only the ch12 was comfortable, all others hurt because the nurse damaged tissue.
But they referred to intermittent catheterisation, as in single use catheters , they go in and out. but my urethra is to scarred for that, even the long term ones were a pain to insert with lidocaine gel. (once it wore out I still felt pain there)

 

[GeorgeG]

I have had OAB and urge incontinence for years. But recently I have had moments where by the time I get an urge I’m already peeing. After several hours I sometimes go and barely get an urge. This is the most scary part about incontinence for me. It has developed into true loss of control with no warning. It is manageable with protection...but you may want to check with your doctor why it’s progressing like this.
Jess

I have experienceda bit of that too, usually urgency is a stair forward thing, I can hold off and try and make it to the loo. But occasionally i just find myself peeing. I think usually after a few hours of urgency and leaking.

 

[GeorgeG]

It's more just like sitting to standing and it happens. And older... well... I'm only 19. Have been IC since I was 12

I often get urgency when standing up from being seated. It seems that my bladder will hold a bit more when seated, but when gravity shifts change, when I stand, the urgency is really bad. It must be something physical, like the bowel puts pressure on the bladder in a standing position. .... Or something... No urgency when lying down, or very rarely. Do you get urgency when lying down?

 

[GeorgeG]

Seems like we are pretty much in the same boat… Been dealing with neurogenic bladder since birth… Toilet trained at 4 in order to keep up appearances but always struggled with bladder incontinence. Back in diapers beginning at 16 and full-time when I moved out at 20 for college.

As the years have gone by I feel that my urgency and frequency have increased and any attempts to prevent are just too painful physically. My intensity cycles are the same as you described except I would give anything to sleep through the night and just wake up wet. I use prescription sleeping meds every night thinking that might help. They have done sleep studies and they say nothing is wrong medically.… All I want is uninterrupted sleep

What have the sitting pills done? I mean do they allow you to sleep through urgency ?

 

[winterheart01]

I often get urgency when standing up from being seated. It seems that my bladder will hold a bit more when seated, but when gravity shifts change, when I stand, the urgency is really bad. It must be something physical, like the bowel puts pressure on the bladder in a standing position. .... Or something... No urgency when lying down, or very rarely. Do you get urgency when lying down?

This is normal for us, even i have this, when sitting it builds up and i only feel discomfort when the bladder is filled more than 200ml.
But i don't leak because it's pinched.
The moment I stand i get an immense immediate urge and the floodgates open ,(well, in my case they're removed but you get the idea)
I thought i was unusual that i didn't leak when sitting but msny have the same issue, partly it's because of the sitting pose, chair, the room inside the diaper etc ,(if it presses too much it pinched the flow off)

 

[GeorgeG]

With me, what you describe might be triggered by diet, and how much water I drink. So sometimes I do not feel anything, then I get urgency. Then at other times I m suddenly aware of a need for the loo, probably triggered by walking into the loo. Other times, standing up. But everything varies, frequently, so difficult to understand.

This is a bit of a surprising development honestly and it scares me.

For context, I do have urge urinary incontinence. Usually my urges come on suddenly and they're pretty severe. But this time around, I didn't actually have any urges. I didn't really feel anything other than a slight feeling of something being a little off. But when I decided to use the bathroom just to try, I realized that I had to go. And quite badly.

This does happen from time to time. But it never fails to scare me more than the usual urges. I'm not entirely sure why my bladder sometimes gives no signals for needing to go quite badly or it gives urges to go when there's not much in there in the first place.

 

[GeorgeG]

This is normal for us, even i have this, when sitting it builds up and i only feel discomfort when the bladder is filled more than 200ml.
But i don't leak because it's pinched.
The moment I stand i get an immense immediate urge and the floodgates open ,(well, in my case they're removed but you get the idea)
I thought i was unusual that i didn't leak when sitting but msny have the same issue, partly it's because of the sitting pose, chair, the room inside the diaper etc ,(if it presses too much it pinched the flow off)

Interesting. Thank you.

 

[SeniorMan]

When sitting it builds up and i only feel discomfort when the bladder is filled more than 200ml. But i don't leak because it's pinched. The moment I stand i get an immense immediate urge and the floodgates open.

I do not get an urge or impulse to urinate. When standing, my urine begins to flow without notice or prompting. When sitting, the same thing may happen. I notice my diaper getting wetter and wetter, not being aware of when I am urinating. Sometimes, when sitting, I notice that I need to urinate, but I cannot. So I stand up. The urine shortly begins flowing.

 

[winterheart01]

I do not get an urge or impulse to urinate. When standing, my urine begins to flow without notice or prompting. When sitting, the same thing may happen. I notice my diaper getting wetter and wetter, not being aware of when I am urinating. Sometimes, when sitting, I notice that I need to urinate, but I cannot. So I stand up. The urine shortly begins flowing.

well yes that's basically what I said, except the only difference with me is that I still have somewhere some nerves left that are overstimulated and when I stand there's a lot of urge pain, but then it already starts flowing, I can't hold it anymore because I have no more urethral sphincter nor most of the bladder neck.

 

[GeorgeG]

well yes that's basically what I said, except the only difference with me is that I still have somewhere some nerves left that are overstimulated and when I stand there's a lot of urge pain, but then it already starts flowing, I can't hold it anymore because I have no more urethral sphincter nor most of the bladder neck.

I can relate to that. Although my sphincter works. More like a battle between bladder spasms and shincter... I m somewhere in-between....

 

[Dinotopian2002]

It's more just like sitting to standing and it happens. And older... well... I'm only 19. Have been IC since I was 12

That sucks Milianna - but I can relate. My IC issues started when I was 17 and they've only worsened since. I've literally been padded my whole adult life. In my case, it happens because my nervous system is just screwed up. Sometimes I feel it, sometimes I don't, and sometimes I feel it, but my body isn't able to get me to a toilet quick enough. So I wear diapers with refastenable tapes 24/7, so I can use a toilet if I feel the urge, but I'm covered if I can't.

I wish I didn't need diapers. But I'm very grateful that I have them.

Breathe Deep, Seek Peace
Dinotopian2002