things I hate about being incontinent

[SeniorMan]

So I've been incontinent throughout my life. I never had experience using the toilet because of my condition, neurogenic bladder. I'm also fecal incontinent. Whenever I had to change a diaper at a gas station sometimes the clerk stops me for bringing a backpack into the store. I understand shoplifting is a problem. If I had to explain to an employee of my condition so I can backpack in. This only happens a few times. Most of the time they don't give a ****.
fungal infections, rashes and UTIs When I was younger I was very self-conscious about myself and people finding out. Went through a lot of bullying and rumors throughout school that I wore diapers. It's not much of a problem anymore in my adult life but the pain is still there from childhood. I've had dates reject me because of it being gay, which didn't help .

I’m sorry to hear that you have been through so much. You are courageous and strong to share your story. I hope you know that you are not alone and that there are people who care about you and support you. You deserve love and respect, no matter what.

 

[slimjiminy]

I got to say that I hate having to plan my day.

Today, because I thought my BM were ok and just hanging around home, I started out with just a guard (a happy day).

But then I got a phone call about aunty needing to get an x-ray etc. So that means changing into my full protection gear since I don't know where or how long I will be out and about today. Our medical system is in crises here in Ontario.

 

[SeniorMan]

I’m sorry to hear that you are having a stressful day. I hope your Aunty is doing well and you can find time to relax later. Maybe you can list the things you must do today and prioritize them according to urgency and importance. That way, you can clearly understand what you can accomplish and what you can postpone or delegate. It might also help you feel more in control of your situation.

 

[slimjiminy]

There is nothing to list. My events all hinged on the medical system. I got her to a medical clinic because I have not been able to get her a GP. We waited all afternoon to be seen in that clinic. Once seen, they gave her a referral to an X-Ray clinic. So we went across town to that before everything closes (each trip required her to hobble there due to the pain). Thankfully the wait there was not as long. But I won't get a call (with findings) until Tuesday at the earliest because this is a long weekend (Monday is Victoria Day). Once I got her hobbled home, I helped her find a cane. Somewhere along the way this afternoon, I urged, but thankfully no BM issues. It was a long day.

 

[fredy552]

Hey! New here!

So many things:

Before I ended up back in protection:

• Constantly trying to hide accidents.
• The terror of trying to get to the toilet in time.
• Terrified about wetting the bed when away from home.
• All the laundry and not being able to pack light clothes wise.
• Smelling of urine all the time and feeling really self-conscious.
• The fear of being 'found out.'

In the protection era:

• The cost! Since I developed neurological complications from Long Covid my control's been non-existent. I was able to get by with DryNites which are really cheap compared to other products when my issues were milder but now it's big plastic backed products with a booster or risk a leak. It's mad when I think what I could have spent money on were it not for my incontinence issues.
• Not being able to pack lightly - the bonus is that you always come back from places a lot lighter but it is super frustrating.
• Lack of suitable toilets - I'm a wheelchair user and so barring a Changing Places toilet it's always a real pain and have to lie on the floor.
• The effort involved in changing - due to my physical issues it's a real pain changing myself.
• Suitable clothing - finding out about semi-elasticated waist trousers and shorts was a revelation but it is a nightmare trying to find clothing that can accomodate a nappy without being ridiculously baggy. I find shorts far better but it isn't practical to wear shorts all year around.
• Linked to the above - the weather and rashes. There aren't high absorbency cloth backed products and even with a booster I find I'm more prone to leaking so it's plastic all the way which makes it a nightmare in the summer. Around the house I've gotten comfortable just being in a t-shirt and nappy which is still really uncomfortable but obviously that's not an option out and about.
• The risk of being 'found out,' however due to lack of smells and careful clothing choices I find this less likely than when I wasn't protected.

So in short, there are so many awful things about being incontinent and using nappies as a way to deal with it. Having said that, the piece of mind I get from protection (I ahd and indeed I think my life would have been so much easier had I been in protection all the time) still cancels out the negatives. There's also the frustration that I've had a lot of false hope from other products that the Continence Team have recommended but find that nappies are the least worst option. I wish there was a much cheaper and less embarrassing way to manage this condition though!

InConLifer I had Covid back Nov. 2020 the Wife tells me they were calling her daily and the first days they would start with Well he is still alive! After I got out of ICU for the 1st day or 2 I did not pee at all they came did a catheter and drained me. Then I started Wetting the bed because just leaning over to find the call button I would Leak or straight up Wet the bed. The 2nd night this happened the night nurse brought diapers and we had a discussion about being in the hospital and in a Wet bed in W. Mi. You get cold quickly and it is a while before the nurse gets to you when hit the call button. So they were having me wear diapers. I came home in Pull Ups and the nurse gave me a few to get by with at home. I used them for a while and after a while it got worse I was wetting the pull-Ups and my clothes and the chair I was in. I am now full-blown Urinary Incontinent. I wear Diapers and Plastic Pants 24/7.

 

[InconLifer]

InConLifer I had Covid back Nov. 2020 the Wife tells me they were calling her daily and the first days they would start with Well he is still alive! After I got out of ICU for the 1st day or 2 I did not pee at all they came did a catheter and drained me. Then I started Wetting the bed because just leaning over to find the call button I would Leak or straight up Wet the bed. The 2nd night this happened the night nurse brought diapers and we had a discussion about being in the hospital and in a Wet bed in W. Mi. You get cold quickly and it is a while before the nurse gets to you when hit the call button. So they were having me wear diapers. I came home in Pull Ups and the nurse gave me a few to get by with at home. I used them for a while and after a while it got worse I was wetting the pull-Ups and my clothes and the chair I was in. I am now full-blown Urinary Incontinent. I wear Diapers and Plastic Pants 24/7.

Really sorry to hear about your Covid experience. It seems incontinence is certainly a complication of Long Covid albeit one that isn't often mentioned. My theory is that it's because people are, understandably, too embarrassed to discuss it but in a Long Covid group I'm in it has come up. It certainly changed and worsened the nature of my chronic incontinence.

 

[caitianx]

Being incontinent stinking of pee and poop.

 

[fredy552]

Really sorry to hear about your Covid experience. It seems incontinence is certainly a complication of Long Covid albeit one that isn't often mentioned. My theory is that it's because people are, understandably, too embarrassed to discuss it but in a Long Covid group I'm in it has come up. It certainly changed and worsened the nature of my chronic incontinence.

InconLifer where is the Long Covid Group at? Facebook?

 

[InconLifer]

InconLifer where is the Long Covid Group at? Facebook?

Yeah, it's called 'Long Covid Support Group' - the banner has a logo with Long Covid Support on it. It's a good group. I was in another one which got full up with conspiracy nuts and snake oil salesmen but this one's been super helpful. I'm not overly active in it as it can get me down a fair bit. I'm very much at the 'learning to live it with it' stage. There's no real treatment for it and unless there's a massive breakthrough I don't see that changing really. I plan on trying to see a specialist privately though as my disability benefits are up for renewal and I need updated medical evidence but I'm not particularly helpful. Physio keeps things in check but in terms of the big picture stuff there hasn't been a change.

 

[Dinotopian2002]

Honestly, the worst thing I hate about being incontinent is the stigma surrounding it.

I get annoyed at the way people don’t believe I need diapers, thinking that I’m too young for them.

I just wish this medical issue could be a non-issue - and diapers can be seen as a legit medical aid, in the same way that people wear glasses to correct their eyesight. That way I wouldn’t have felt embarrassed or guilty about having to wear them. Well, no more.

This is what I need to manage my condition - if my underwear is thicker, crinkles and needs changing more often, then so be it. It doesn’t make me a baby or useless - I just need help controlling my bladder and bowels.

Right, rant over.

Breathe Deep, Seek Peace
Dinotopian2002

 

[InconLifer]

Whoops noticed a typo in my post above - meant I'm not particularly hopeful rather than helpful. The brain fog's such a pain, I'm always doing this.

Honestly, the worst thing I hate about being incontinent is the stigma surrounding it.

I get annoyed at the way people don’t believe I need diapers, thinking that I’m too young for them.

I just wish this medical issue could be a non-issue - and diapers can be seen as a legit medical aid, in the same way that people wear glasses to correct their eyesight. That way I wouldn’t have felt embarrassed or guilty about having to wear them. Well, no more.

This is what I need to manage my condition - if my underwear is thicker, crinkles and needs changing more often, then so be it. It doesn’t make me a baby or useless - I just need help controlling my bladder and bowels.

Right, rant over.

Breathe Deep, Seek Peace
Dinotopian2002

I completely agree about the stigma and can really relate to being told you're too young for them. The same thing happened with me and the local Continence Team - they said I was too young and I had to explain that less absorbent and protective products leak and I can't risk a leak in a wheelchair. There's also the comfort aspect as well.

In terms of my condition, I'd say the incontinence is probably the aspect which impacts my life the least in that in isolation it wouldn't stop me getting on with life however it is the most embarrassing aspect due to the stigma.