3rd post but need to post

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So I think I'm finally figuring out how to use this. I've gotten a lot of support on my other two posts, but what I'm hoping for is to hear from younger folks *but I will always welcome older advice!* I really want to connect with those who are under 40 and went from absolutely fine besides the really rare occasions to being told in my case at 34 that incontinence is most likely going to be for the rest of your life and will most likely get worse. How did you handle being blindsided by being told that you will need protection every night,have it progress to during the day, and if it applies to you, 24/7? How did you open up to people if need be? How do you handle accidents? What about relationships? When I got the bad news earlier I was like ok,I can handle this. I have a lot of medical problems going on right now, and trying to deal with one thing at a time. But Now 12 hours later,after having a near break down from still not being able to figure out how to properly diaper myself at night and hoping the pull ups I have will not leak after spending the last 24 hours with protection on for the first time being coherent. I just don't know how I'm going to do this. I so badly want to wear my normal underwear and cross my fingers, but knowing I haven't had a dry night in months, I know it won't end well. I've read so many posts from so many people that this does get easier, and I'm sure eventually it will, but I need help at this beginning stage. Comment, send me a message, anything.. I don't care if male or female, I'm just in such a need of hearing from others around my age. I'm sorry if I'm coming off mean,vthays noty intention.

 

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I had a head injury at 28, and at the time, there were so many other things to deal with that it didn't seem like something to worry about. I knew what to do about it- I had been a physical care attendant and thought of incontinence products simply as medical devices. I didn't think it would be a long-term problem, and it was getting better, but never fully cleared up. Over the years, my bladder control problems increased and I've been told that it will only get worse. How did I deal with it? Certainly, there was some denial going on ('It's really not so bad- someday it will get better...'), but mostly, I am reminded that some of my other symptoms are worse. Wearing diapers has always allowed me to live the lifestyle I want- I can still work, drive, go to school, socialize etc etc. I was dealing with vision problems that didn't start to clear until a couple years ago (3 decades post-injury) that no specialist could diagnose or provide prognosis for (losing my sight would have been devastating) so, the bladder control issues didn't seem to be as big a deal as the other stuff.

 

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I’m 43 but my issues started when I was 37 so I guess I fit in your category.

I fell down an escalator and fractured my ankle in 4 places. I started not being able to make it to the bathroom and thought it was just my lack of mobility. Well it never got better. After some tests and many urologist visits it was determined I have a paralyzed neurogenic bladder. I damaged nerves. 7 surgeries and 1 amputation of my right leg below the knee and I’m still incontinent. These days I have a suprapubic catheter but I hate it. I’ve had it for almost 4 months and I’m like give me the diapers back. Call me crazy but I’d rather wear them than deal with this.

Long story short I wouldn’t wish incontinence on my worst enemy. It’s embarrassing and expensive! But let me tell you one thing. If i had the choice of incontinence or losing my leg you’d bet I’d choose incontinence.

 

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Hey! Fellow young person here!

I'm 29 and in a bit of a different position in that I've always had relatively mild continence issues and having suffered in silence for so long I found that products greatly improved my quality of life. More recently however, due to muscle-weakness caused by long-Covid, my bladder issues are much worse and the need for thick protection 24/7 has taken some getting used to and still gets me down.

My advice is that it does get better and a big part of wearing during the day is the anxiety of being 'found out' but the more I went out wearing protection the less anxious I became. I now have to regularly wear much bulkier products than I used to and don't have a huge amount of anxiety. Ultimately with the right clothing choices diapers aren't hugely noticeable and chances are people aren't looking that closely anyway.

I guess in terms of handling accidents, I've found that finding a product that you can trust and so is unlikely to leak is a must and also having extra precautions like plastic pants help. I always carry spare supplies (and spare trousers in case the worst comes to the worst).

It took me ages to learn to diaper myself properly so I can relate. My advice would be that different brands fit differently and I think a big part of it is finding a brand with sizing that works so it's easier to put on. I'd also recommend getting a product with properly refastenable tapes so that if you don't get it right first time it isn't the end of the world. Unfortunately, plastic backed products do tend to be worse with this (I've found BetterDry to be good though).

Unfortunately, relationship advice is one thing I can't give. I'm still at the stage where I wouldn't be confident dating with my issues.

 

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Hey Zora,
I just thought I would touch bases as I’ve read some of your earlier posts and something really stood out to me. The reason I’m jumping in is that I am very concerned for you with the potentially crippling outlook you’ve been given.
I will also tell you that this happened to me in a split second, and turned everything in my world completely upside down at the age of 28. Both bowel & bladder control gone, and too many broken bones and torn joints to mention. Of course there were a lot of surgeries etc. and if this gives you an idea of the Type A person I was at the time of the accident my bicycle was sitting in my office as being an extremely active athlete I rode it the 18 miles to work that day, just so I could do an hour of mountain biking with my coworkers & employees at lunch.
I had to get back into dating etc. as my wife left me 8 weeks after the accident, telling me very clearly she couldn’t accept a 28 year old healthy LOOKING man in diapers 24/7. Talk about grinding the last of my ego under her heel! In hindsight I was furious and eventually used that anger to propel myself out of that HELL.
I won’t repeat what I’ve already posted but I can tell you this, your life from here on out is only going to be a result of the choices you make going forward. I can tell you I have experienced far more wonderful adventures than I could ever have dreamed of doing even before the injuries. It forced me to reach deep inside and rip out all the negative crap that had built up within me and start filling my new self and life with positive things. It has been far from a smooth ride, but based on the choices I made back then it has given me the strength to endure and overcome much I might have thought impossible previously.
One of the things you mentioned was the loss of strength in your legs & potential loss of bowel control. I can tell you these two things alone make my hair stand on end! This is nothing to stand for without exhausting every Avenue of treatment before it’s too late.I spent 2 years (8 months in-patient) to learn how to walk again after a botched lumbar spine surgery.
Just a year ago I had I tumor removed from my C-Spine (neck) that my former doctors literally sent me to a shrink to convince me the pain, lack of sensation & shaking in my arms was all in my head. It was all psycho-somatic!
Only after having my attorney contact the President of the Hospital did I get any treatment. The former radiologist had ACCIDENTALLY “misread” my X-Rays, CT Scan & MRI. The surgeon later told me I had only about 4-6 months before I would have become a permanent Quadriplegic, as the tumor had already destroyed 4 levels of vertebrae. He also promised to testify on my behalf against his inept money hungry former colleagues as I’ve only regained about 20% utilization of my right arm and still face 3-4 more surgeries to restore my neck.
I don’t mean to scare you, but you deserve answers! My course of treatment by my former team was based on my history, and and some bean counters that never even met me! In their eyes I would never make it back anyhow, why waste their budget and lose their bonuses to help me!
I wish you nothing but the best! I know that sometimes the fear can be overwhelming, but please don’t give in. If I can be of any help to you please reach out by PM or whatever you feel comfortable with!
I hope everyone has a wonderful & safe New Year!!!

 

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Hi @jeffswet, You are lucky indeed that your vision problems have cleared up. Losing your vision would definitely be devastating all the way around, especially if you lose vision later in life. It would be awful to lose the ability to read or to be able to drive or just be able to enjoy the scenery or be able to see to enjoy your family and friends. Compared to that incontinence is not such a bad issue.