Urge Incontinence has become total incontinence

[Archives1]

In the last couple of weeks I have noticed less of an urge but still wet. Now it has progressed to total loss of bladder control. I have no urge, no feeling in my bladder and I pee constantly. Doctors say the damage in my spine has worsened (they cannot operate) and the signals are just not making it to my brain telling me I have anything in my bladder. So I guess this is the new me. Totally dependant on adult diapers for the rest of my life day and night. And I still have to work. I really wish I would be able to get disability for it because I am ashamed to leave the house. It's a hard, humiliating and EXPENSIVE problem to have. Glad I have all of you to vent to that understand.

 

[Archives1]

Many of us here have had another condition or injury that caused the incontinence.
Not sure if there is a solution like inter stim for you you might read those threads. I'm not able to give medical advice way out of my wheelhouse. There's so many people with better experience on possible medical treatment.
Yes we vent alot here and exchange some good tips on products that work well.
Read every post and check in or vent as needed!

 

[Archives1]

Many of us here have had another condition or injury that caused the incontinence.
Not sure if there is a solution like inter stim for you you might read those threads. I'm not able to give medical advice way out of my wheelhouse. There's so many people with better experience on possible medical treatment.
Yes we vent alot here and exchange some good tips on products that work well.
Read every post and check in or vent as needed!

I have the interstim already and i have been told I can leave it on or turn it off. They tried botox with no luck and indwelling catheters give me serious infections. I found out real quick a diaper is better than a catheter for me!!

 

[Archives1]

So interstim did nothing to help?

 

[Archives1]

Hi
I have the same issue after 2 years post prostate surgery . I use men’s liberty external catheters . They work for me. I also take lasix daily so I void all the time. I use URO pants I order from Amazon. If you email me I can tell you what I do. They work for me. I use them 24/7

 

[Archives1]

I have total incontinence from an accident. I fell down an escalator. I now have a paralyzed neurogenic bladder and occasional bowel incontinence. There is no cure. I’ve been living with this since January 3rd 2015. I try not to let it stop me from living a full life. I also fractured my ankle on 4 places when I fell and had 7 surgeries finally resulting in my leg being amputated. That’s more of a hinderence than the incontinence. I have days that I cannot walk because of infection or wounds so I have to use my wheelchair and it’s a pain and I don’t go out often.

 

[Archives1]

I feel your pain. I have no sensation of needing to urinate. I just spontaneously void a huge amount with no warning. All I can do is sit on incontinence pads in my furniture. My voids are so large diapers don't even contain it.

 

[Archives1]

Friends, I have my urinary incontinence from Major bladder spasms. It feels like a labor pain (3 kids) and it pours. I have no prior notice and never enough time to get to the bathroom. It is very painful and the thing the doctors can’t understand is that the pain goes from the bladder to the upper part of my inner arms to my hands. That’s why I am seeing a neurologist urologist specialist. I have had no congenital injury or any injuries. I had 2 surgeries on my SI joints several years ago with great relief of pain. I did have a Peripheral Nerve Stimulator Put in my lower back 2 years ago for spinal arthritic pain and I think that is my problem since I never developed total incontinence till this year. Completely out of the blue one day. Hopefully I will get an answer when I go to MUSC on the 30th. Best wishes to all for a happy holiday and I will be making a toast to all!

 

[Archives1]

@Randall I'm pretty much the same with you on this matter.i had a disc at the c3-4 level which nearly severed my spinal cord. had surgery in march of this year. surgery fix some issues but not nearly all of them.Post surgery im left with a severly damaged spinal cord.

i've still got neurological issues,Ive got issues with my diaphram its over 50% not working , I've got GI issues from top - bottom , and a barely working bladder. All of which is being blammed on my degenerative disc disease and spinal stenosis ive got.

i just recently had bot a systocope and urodynamics test done. my urologist wants to put a enterstim in but my insureance will cove all but $10,000 of it. and the hospital wont let my urologist put the interstim in.

my options are self catheter , super pubic , or a indwelling foley catheter or continue wearing diapers/briefs/pull ups. as of right now.

 

[Archives1]

@Randall Sorry to hear about your issues. It was a similar thing for me. Whilst I'd never really been able to stay dry due to a mixture of factors (after dribble and urge issues, lack of interoceptive awareness due to my autism) and IBS was becoming more and more of an issue, constant floods were not the norm and, short of IBS flareups, I could get by with wearing pullups and relatively thin nappies under regular underwear when working. Plus, whilst I needed protection, big floods weren't the norm and because I was still able to wear regular underwear over the top, it just felt like some added protection rather than a replacement.

Then my bladder control lessened a huge amount pretty much overnight thanks to the sudden onset of neurological issues caused by Long Covid and it felt like a completely different ballgame psychologically. Couldn't hold it in for any amount of time and once I started going couldn't stop. Thinner more discreet products were out and in came bulky, plastic-backed products 24/7 which replaced my underwear completely and I'd get through 3-4 nappies a day rather than one or two. It's been that way for a year and a half now. Still fighting to get some treatment.

I can relate to the work stuff but it is doable, with the right clothing choices no one will bat and eyelid. Get trousers 1 or 2 sizes up and it offers better concealment and re the noise, with all the ambient noise in a workplace it isn't too noticeable. I've been in thick nappies for a year and a half and no one's said anything. It's a real pain though and a constant source of anxiety. The fact I'm in a wheelchair these days actually probably helps with that.

I'd say nowadays concealment isn't my main annoyance - it's more skin issues and the cost of products in addition to the awkwardness of changing out and about. Given how inaccessible a lot of accessible toilets are, it's often a lot of pain and discomfort. Due to the wheelchair, I often don't have enough space to lie on the floor.

 

[Archives1]

@Randall This is true. I’m sorry your incontinence has worsened; I dread the same. What happened to your spine and how did it worsen? I’m worried about my own. The numbness of my sciatica was recently so bad I put my foot down sideways then stood on it with all my body weight, breaking and displacing it in four places that required surgery, with a 2nd-degree ankle sprain, too. So my degradation isn’t worsening as well. My back/pain doctor says it may be time for surgery, like a spacer. I’m not keen on back surgery because it has never helped - only worsened things - for my family members.

 

[Archives1]

@Maymay941 It’s true that the more you read here, the more you learn and experience relief.

 

[Archives1]

@Dmorris I bet it’s the interstim, too.

 

[Archives1]

@compwiz878 Sounds absolutely horrible!

 

[Archives1]

@Sci_Fi_Fan How is school going?

 

[Archives1]

@snow well I can tell you this

Anytime surgery is done on the spine, especially if fusion is needed.

That the fusion can and will put pressure on the joints above and below the fused area .

Basically once you get fused your looking at more surgery down the road.

That road could be long or very short. Because each person's body is different.

I had my first discectomy in 2015.

And nearly five years later had to have another discectomy and fusion If referred to as a ACDF .

One single disc one level above the first fusions in 2015. Actually it was more like a year and a half after the first fusions. I started to get pain in my neck and off and on numbness in my arms. Yes the two surgeries where done on my neck.

The c3-4 vertebrae are fused together, along with c5-7 yes c4 is fused to c5 . Basically one complete fusion from c3-c7 .

Also the first surgery was a walk in the park in comparison to the second surgery and pain and the many neurological issues that came with disc between c3-4.

I was knocking on living as a quadraparlgic's door infact the door was opened awaiting my enterence.

By the time I was able to get the surgery in March of this year the disc nearly severed my spinal cord, while surgery intervened but I'm left with a severely damaged spinal cord from the disc.

And with many neurological issues with limbs are organs.

 

[Archives1]

Horrified to hear of the challenges but glad you all are sharing here. At least you can network your experience and know others are with you as you navigate the issues.
This is the pLace to be ultimately HUMAN.

Before finding the forum I with my little problem felt so alone and ashamed. Thanks to folks here I finally got some peace and move forward with gratitude for being. Despite changes there have been so many many good times and good days.

 

[Archives1]

@snow Not brilliantly unfortunately. My short term memory loss and brain fog make studying really difficult and going in full time caused a massive relapse symptom wise. Part of the issue is my transport as well - have to get taxis door to door which causes massive travel sickness increasing the fatigue. Fallen really behind with work and had my Covid booster jab which has laid me up for over a week now. I'm going to try and get an extension with the work.

It's the university itself as well - so difficult to get around in a wheelchair and many of the classrooms and lecture theatres aren't wheelchair friendly at all. Have pranged my chair on numerous occasions. Plus, the disabled toilets aren't great either so changing's a real pain and extremely time consuming. I have asked for a changing bench to be put in one but to no avail.

It's a funny one in that my main reason for doing it was to make friends, be productive and not be stuck in the house all day, every day but I can't socialise when I want as my travel times are nailed down and I actually welcomed the move to online because it improved my health but it sort of defeats the object somewhat as I'm still stuck in doors all the time!

I don't want to sound overly negative, I have had fun, made some friends and I find the material interesting but it is beyond what I can do at the moment which is really frustrating. Had I known I'd be in a wheelchair when I applied I would have picked a different university as whilst the teaching is great, the building is just so awkward to move around in and I dread going in. Going to the Star Trek con at the Excel Centre really showed me that it is possible for venues to be properly accessible and for staff to make you feel included but it's poles apart from my university experience. I suppose I naively thought that a wheelchair would make my life easier and whilst it certainly does in some situations as I can't walk safely or stand for any length of time, it really hasn't given me the freedom I wanted.

I think the really frustrating thing about all this is that I had a pretty rough time in my teens and my early twenties due to mental ill health and after teaching abroad and my PGCE it felt like in my late-twenties I was finally making progress and on the road to a stable career. Outside of work, I was a musician (used to be semi-professional and worked as a sound engineer as well) and did a lot of acting and improv but can't do any of that any more. Long Covid has basically meant my life stopped at 29. I feel like a kid again in that I'm dependent on my parents for a lot of practical help doing day to day things. It's sort of odd in that when I joined this forum my incontinence issues were the main cause of stress in my life health-wise but the physical and mental impairment is much worse.

Apologies for the sob story but that's sort of how it is at the moment. Hope you're managing to make some progress with your Long Covid issues!

 

[Archives1]

sci Fi Fan From what I remember you have a motorized wheelchair? Are you able to walk pushing a regular wheelchair?

You've got a lot of get up and go attitude as does Snow So glad you can network both hit by parallel double whammies.

 

[Archives1]

@Maymay941 It depends on how my health is really. On good days I try and use my crutch as much as possible, especially using toilets as it gives me more space on the floor of disabled toilets to change if I leave my wheelchair outside but it definitely takes its toll. I have used it like a stroller on some occasions as well. Unfortunately, I often feel like I'm making progress and then I'm back to square one. I'm very pleased I've got the booster jab as I dread to think what a third round of Covid would do to me but it has set me back a fair bit.