What is the best you could do/pull-ups for bladder spasms

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Hi guys,

I hope I’m not posting too much but I wanted to start another thread because I have a question about the process of acceptance.

I’m beginning to get this weird dissociation where I feel my pull-up getting a little warm and I kind of tune out, go to the bathroom and finish. Every time I do this, I check it and I’m still kind of in denial when I feel the front and it’s warmer.

I’m starting Oxybutinin tomorrow so hopefully I’ll go down from using 4-5 to 2-3. I change when I wet but I’m wondering if I should keep it on for longer because it’s not terrible.

I know that 85% of patients with cerebral palsy experience incontinence but I wish I was in the 15% that didn’t lol.

This kind of popped out of nowhere so I’m trying to make sense of all this. I am only 26 so I feel like I’m too young for this but I’ve also read that cerebral palsy sometimes causes premature aging.

Can I receive some tips on the best pull-ups for bladder spasms and when I should change? I don’t want to destroy the environment and I also want to keep myself healthy.

Thanks so much for reading this!

 

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Thank you for sharing this rdouga1, being pretty new to this myself I am experiencing a lot of what you are in the denial sense, and disbelief when accidents happen. Also, I am not quite as young as you but pretty young, 35 so I hear you on that internal struggle too. Personally I like Always discreet pull-ups as they wick the moisture away and have a mild fresh scent, I never smell urine using these.They hold a lot and are a discreet fit as far as look and sound go. They are also very soft and comfortable. But I don't know if you are a guy or not and might be looking for something not targeted to females. Anyway, best of luck to you and don't feel down about incontinence, you have a great community here you can always talk/vent to!

 

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I suppose it’s going to depend (no pun intended) on the volume you’re voiding when you have an accident. I use depends real fit pull ups at work for frequent dribbles and squirts and find that these are okay as long as I’m not losing full control of my bladder. They are very discrete but not good for a flood. I have tried higher absorbency pull ups (depends, Tena, molicare, etc)with actual leak guards but find that they sag at the back even when dry to the point where it is more discrete to wear a tape on brief with a snugger fit. Just a thought, although I understand that this is a slightly less functional option for toileting than pull ups.

 

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Hi Rowan and Sarah,

I am a male and because I use a wheelchair, I am not too worried about discretion. I don’t flood (yet) and I can retain full control about 60% of the time. Most of the day I feel the urge to go but my bladder will let go for three seconds at a time until I make it to the bathroom.

I’m just wondering if I should change immediately when I notice I’m wet or if I can go for a little bit between changes. I am worried about the environment and the more I can limit my landfill usage, the better.

I just wish I knew the biology behind cerebral palsy and why incontinence develops in young adulthood rather than middle age.

 

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With the cost of items these days doing nothing but going up, I wear until my diaper feels uncomfortable or it is close to leaking. Sometimes it allows full use, other times I just need to change to feel better. Use a good barrier cream, powder when needed, and go with the flow if you will.

Making sure your skin is not put into a state of problems, there is no other reason I can come up with to change a slightly damp pad.

It is really a personal choice for each of us that lacks a solid answer.

 

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Thanks! I usually change when things are uncomfortable but I don’t know about skin irritation and when to use powder/barrier cream (I didn’t know what that was until today).

It’s kind of disappointing because there’s part of me that is hoping to go back to regular underwear but I know I will probably need to wear these the rest of my life because of this history.

I know again that 85% of people with cerebral palsy have continence issues but I was hoping to be part of the 15% that didn’t.

Does anyone know how to cope with these feelings? I guess this might be my adolescent brain struggling to accept I am not invincible but it also came out of the blue.

Any advice from someone with cerebral palsy would be great

 

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Update: Just got tested for UTI and it came back negative. (Sigh), I don’t know how to feel or what to do.

 

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I understand. When almost 20 years ago my squirts and awkwardness started I hated it. I don't have cp so someone else needs to chime in on that. The best I can say is dry pants make the world better. What's under is no one's business but yours. My wife is awesome and that support helps. Life could be worse than some wet underwear. Perspective makes a lot of difference for me. I went to lunch with my wife and when I stood up, my butt was soaked. I had khaki pants on, the guy behind me totally noticed. She said you'll never see him again and she walked out behind me all the way to the truck to kind of hide things.

 

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@rdouga1 no need to worry about butt sag if you’re seated. In that case I’d give the molicare pull ups a go. They have a range of absorbencies. I try to change on a timed schedule for when I know my pull up will be pretty full, but not soaked and in dire need of a change. This gives me a bit of a time buffer if I don’t have access to a toilet straight away. If I know I’ll be drinking more and perspiring/ exerting myself less or if I have a UTI, that timed interval is shorter, and vis a versa if my fluid intake is lower or if I’m going to be sweating/ exercising and/ or don’t have a UTI and therefore better bladder control. It definitely take time to find a rhythm. I’d recommend testing the product at home for a couple of days before wearing it out and about to get used to it’s capacity. I was absolutely terrified about leaks in public and deliberately wore one at home until it leaked, weighed it, and then used the measured volume as a guide to use for change intervals.

 

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To clarify, I don’t mean wearing the one pull up for 2 days. XD

 

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@rowan123, I usually am home most of the time with the exception of the occasional outing. I just don’t know exactly when I will start to leak because my urine comes out in very small amounts. I think I could go 12 hours without changing because my incontinence is not terrible and I also am somewhat new to this so there might be some trial and error.

Also, how often should you put on powder/barrier cream? I was told 1-2 times a day but I want to make sure.

Also, do you put it around your genitals? I apologize for being graphic but I want to know the most effective way to be hygienic

 

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@rdouga1 maybe smell will be a greater guide for you, then. When I’ve had to wear tape on nappies one the past, I found I couldn’t go for more than three hours without them starting to smell. I figure that if I’m noticing the smell, other people definitely will be. I use powder (a liberal sprinkle in to the pull up before I put it on, and a sprinkle in the front and rear after I’ve put it on) every time I change. I don’t often use barrier creams as I don’t like the sensation and find that they interfere with the absorption, but that’s just me. I have used Sudocream before to treat a mild rash.

If your leakage is really light, have you considered wearing something like a guard in the front of your underwear rather than a pull up?

 

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@Rowan123 I tried using guards but I found that they didn’t stay in place when I could make it to the bathroom and they were hard to put in my underwear with my cerebral palsy so pull-ups are a lot easier.

I think that I might try to use smell as an indicator-I’ve never thought to do that before. Like I said, I’m still new to this so you guys are helping me.