New Symptoms and a lot of embarrassment

InconLifer said:
The nurse didn't want to risk it as I couldn't get myself out a chair.



I can relate. Prior to finding electrolyte tablets worked for me I had the same issue. It was a nightmare as, being incontinent anyway, adding more fluid meant I got through amount a crazy amount of products a day. The worst thing was waking up feeling completely and utterly dehydrated every morning, no matter how much I drank.
Yes! I drank 6 20oz Gatorades today and could not get ahead of the dehydration! Headache, fatigue, and constantly covered in sweat all day....some days are just better than the others. Luckily I didn't get too dizzy like most days that I'm super dehydrated on.
 
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berrt said:
Yes! I drank 6 20oz Gatorades today and could not get ahead of the dehydration! Headache, fatigue, and constantly covered in sweat all day....some days are just better than the others. Luckily I didn't get too dizzy like most days that I'm super dehydrated on.

Sorry to hear things are still so rough. Hope you manage to get some answers soon.
 
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@berrt Been thinking of you and hope you're doing well.
 
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DadPhilosopher said:
@berrt Been thinking of you and hope you're doing well.
Thanks for the positive vibes and thoughts! Right now I am just waiting to hear back from my PCP on my holter meter test and trying to not be as frustrated with the inconsistency of everything. I will have some days where I don't have too bad of symptoms and others where it's pretty gnarly. Just last night I got extremely exhausted and had a flare up by just standing in the kitchen shredding some pork butts I had smoked earlier in the day. Today has been meh with some headaches and very active bladder
 
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berrt said:
Thanks for the positive vibes and thoughts! Right now I am just waiting to hear back from my PCP on my holter meter test and trying to not be as frustrated with the inconsistency of everything. I will have some days where I don't have too bad of symptoms and others where it's pretty gnarly. Just last night I got extremely exhausted and had a flare up by just standing in the kitchen shredding some pork butts I had smoked earlier in the day. Today has been meh with some headaches and very active bladder
Glad to hear you're hanging in there. Neuro things do tend to be a wild roller coaster ride. My mom has one, a different one, and she copes as best she can but her body just does dumb things a lot of times. It sounds like you're staying positive, and that's awesome. I hope you get things more under control soon.

As a point of curiosity, do the Drs. helping you now think the terrible NSAID advice you were given in the past is a contributing factor?
 
DadPhilosopher said:
Glad to hear you're hanging in there. Neuro things do tend to be a wild roller coaster ride. My mom has one, a different one, and she copes as best she can but her body just does dumb things a lot of times. It sounds like you're staying positive, and that's awesome. I hope you get things more under control soon.

As a point of curiosity, do the Drs. helping you now think the terrible NSAID advice you were given in the past is a contributing factor?
They haven't said anything about the nsaid being a contributing factor. Maybe after they find out what is actually going on they can determine the why it is happening
 
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Liddlefoot said:
Home: threaded armor or light tape on diaper

Public: always a safe and reliable tape on of Tranquility-ATN-quality or better.
You are right about that.
 
@berrt I hope you're doing better. Last I heard things were pretty challenging in your world. It's been a few months, and I hope you've finally gotten some answers, and maybe some relief from the huge pile of unpleasant symptoms that was chasing you. Have a blessed day!
 
DadPhilosopher said:
@berrt I hope you're doing better. Last I heard things were pretty challenging in your world. It's been a few months, and I hope you've finally gotten some answers, and maybe some relief from the huge pile of unpleasant symptoms that was chasing you. Have a blessed day!
Thanks for the kind thoughts! I still don't have any answers, but they put me on some beta blockers to start treating some of the more concerning symptoms. This has helped my blood pressure and heart rate spikes, but still have no answers why everything is going on. I still get fairly regular hot flashes and have some lingering exhaustion and dehydration if I'm not keeping a watch on my intake.

I would say the medicine has helped with my thirst a bit - I'm down from averaging an intake of 150+ oz/day to about 120+- oz/day. I think I can actually graduate to just wearing male guards most days. My urges are more manageable and less painful now that my intake is a bit lower than before. I still have a few bad days where I feel like wearing full protection is better than sprinting to the bathroom or having bladder cramps every 30 minutes from trying to hold it in.

One thing I've noticed with using the toilet more often now is that if my urine pressure isn't really strong I tend to "spray" in a couple of directions. I also have a couple of quarter size stains on my pants after going most of the time (hence the graduating to guards). I'll bring this up with my Dr at my next appointment.
 
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Hi berrt
I am 36 and I am full incontinent and I wear diapers 24 7 and they are quite and I get them though my insurance and you should ask your Dr or you may ask me and I will give you the info and I will never get out of my diapers my dipers have tabs
 
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berrt said:
Little bit of a rant and embarrassment here....So I am a 30 year old male and have had excessive thirst and urine output for about 3 years now - drinking an average of 200-250 oz a day. I never said anything to my Dr before, because all annual blood tests came back normal. Last week I went back to my General Practitioner for my even more increased urine and urges/accidents (again did not test for high glucose). On Thursday we did a 24 hour volume test and consumed 6700ml of water and had an output of 4700ml of urine. Still waiting further testing.....

My family and I went out for dinner of Friday night and I had to get up 2 times during dinner to use the restroom - it was a full release each time and an emergency. When at Walmart we were looking at shampoo and I told her I was going to get some pull ups for the first time so that I wouldn't have to worry about making it to a restroom in public again. I got a pack of depends real fit for men. It was the most embarrassing thing I've done outside of telling my wife when I didn't make it to the bathroom after back to back meetings. I did find that after putting one on and wearing all day that I was "leaking" and not even knowing it until I went to the bathroom later on - I didn't notice this beforehand.

A few of my questions are:

1) If you are at home with mild and only sometimes accidents do you wear pull ups or diapers - and if you do, do you still try to make it to the bathroom if you're up every 30 minutes to pee? Sometimes it's painful and other times I have plenty of time to get to the bathroom.

2) How do you handle public events or going out to dinner with friends? Do you still drink alcohol or tell people why you're not?

3) How do you get over the embarrassment of wetting yourself in front of your wife or family even if wearing protection?

4) Does it ever get better? It just seems like it's getting worse and it is taking a toll mentally.
1.) I started with Pull-Ups and eventually, I went to Briefs (Diapers). But that is something you have to figure out and manage IC/OAB
2.) I wear Diapers and Plastic Pants 24/7 365 to work play and bed. I change 3-4 times a day. It takes a little bit of trial and error unfortunately to get figured out for yourself of what to wear and when to wear and how long you can wear a particular product that you choose to wear. Oh, I forgot if you drink alcohol as for me I pee a lot drinking beer so remember that no matter how you manage your IC/OAB it all goes the window! Me i usually flood my diaper and so far I have been home when I have an accidental leak wearing my diaper.
3.) When I was wearing Pull-Ups I wet through the Pull-Ups and my pants to my chair. Yes, it embarrassing the first few times but once you get figured out PROTECTION works for you. You and your wife will get comfortable with your problem.
4.) I do not know if it really gets better as far as mental goes. If I need to change I wear Diapers and Plastic Pants 24/7 365 I just go to my room and change. Have a discussion with your wife It took a little it for me to tell the wife. I became OAB after a month and a half in the hospital with Covid and came home wearing diapers and did not say anything to anyone I hid my problem until it became such that I had to go from hiding my Pull-Ups to transitioning to Diaper and Plastic Pants. I then told my wife she never said anything but I think she knew I had a problem.
And Life goes on do not let your issues control you control it the best you can and continue with your life. :)
 
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fredy552 said:
4.) I do not know if it really gets better as far as mental goes. If I need to change I wear Diapers and Plastic Pants 24/7 365 I just go to my room and change. Have a discussion with your wife It took a little it for me to tell the wife. I became OAB after a month and a half in the hospital with Covid and came home wearing diapers and did not say anything to anyone I hid my problem until it became such that I had to go from hiding my Pull-Ups to transitioning to Diaper and Plastic Pants. I then told my wife she never said anything but I think she knew I had a problem.
Agreed that it's best to let your wife know, but perhaps not every detail. Eventually my wife just said "I trust that you'll use whatever you need to, to manage your IC". In other words, I was providing too much information.

Also allow time to allow your wife to adjust to your adjustment. Mine still doesn't totally understand my U-IC but that is ok. She thought I was leaking frequently/all the time. I had to explain that I can wear a bathing suit as long as I stay ahead of my bladder (it doesn't get too full). Over time, your new IC life will just become "normal" for her also. She can help make sure that you're not "showing" when you go out or offer smell advice etc. The only thing she has ever said is that she'll never get used to my washed plastic pants hanging up in the shower to dry.

The one area wives are often deficient in is that they want to suggest drug store products. These are often inadequate but be gentle (they're trying to help). Sometimes you might need to buy better products online instead.
 
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berrt said:
Little bit of a rant and embarrassment here....So I am a 30 year old male and have had excessive thirst and urine output for about 3 years now - drinking an average of 200-250 oz a day. I never said anything to my Dr before, because all annual blood tests came back normal. Last week I went back to my General Practitioner for my even more increased urine and urges/accidents (again did not test for high glucose). On Thursday we did a 24 hour volume test and consumed 6700ml of water and had an output of 4700ml of urine. Still waiting further testing.....

My family and I went out for dinner of Friday night and I had to get up 2 times during dinner to use the restroom - it was a full release each time and an emergency. When at Walmart we were looking at shampoo and I told her I was going to get some pull ups for the first time so that I wouldn't have to worry about making it to a restroom in public again. I got a pack of depends real fit for men. It was the most embarrassing thing I've done outside of telling my wife when I didn't make it to the bathroom after back to back meetings. I did find that after putting one on and wearing all day that I was "leaking" and not even knowing it until I went to the bathroom later on - I didn't notice this beforehand.

A few of my questions are:

1) If you are at home with mild and only sometimes accidents do you wear pull ups or diapers - and if you do, do you still try to make it to the bathroom if you're up every 30 minutes to pee? Sometimes it's painful and other times I have plenty of time to get to the bathroom.

2) How do you handle public events or going out to dinner with friends? Do you still drink alcohol or tell people why you're not?

3) How do you get over the embarrassment of wetting yourself in front of your wife or family even if wearing protection?

4) Does it ever get better? It just seems like it's getting worse and it is taking a toll mentally.
In a way I can very well relate to the embarrassment that you are experiencing, but in a different way.
Some time back I had an accident on the job. Waking up several days later with all sorts of tubes coming out of me with my wife standing there crying.
Realizing after I returned home and knowing that I'd either have a catheter or that dam sock and tube fine if it's temporary but long term that's another issue. Then the #2 starts happening because your eating again there's only one solution for that logically.
After starting to be put into that and in reality not wanting it because as you'd see it made you less of a man. I was made to move around from chair shower and etc. All I wanted to do was to stay in bed under the covers.to hide the fact. Then came the bed sores. Those are a pain and even more embarrassment. I'd go on but I was made to become as active as possible because I was still in the learning curve of taking care of myself. Then there was the Dr appointments and the physical therapy appointments and my wife doing the grocery shopping. No matter what I wanted to go back to my bed.
I experienced all sorts of emotions the worse that it would be known to everyone that as a grown man I was wearing a diaper.
I can relate what you are feeling about going out having to wear protection. It's not easy. But it took a lot of work from my wife to get me to understand that who cares it's none of their business. In actuality those ppl have more issues than you have. The fact that they make it of their concerns and in the first place beside they've got no idea their nothing to you. Your taking responsibility for "your life". That's the most important thing. Taking charge of your life and doing what any responsible person should do. I'm guessing that your young an single story if im wrong. You may have the feelings that your life is over in some aspect. But not in reality. Your going to be your own worse enemie if you let paranoia take over.
Now I'll be honest being this site and others there are so many here that are looking for excuses as to how to get these things in their lives and how to get excepted. Well those ppl will never get a grasp on reality.
Now if in reality this is sincere you've got a major wall to break down in front of you. It's up to you to make yourself and convince yourself that you have become a responsible person to except that there is a issue and your owning it.
I wish you luck in your adventures and hope your health issue doesn't become that bad.
 
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