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  • jiriji
    replied
    Originally posted by nogo View Post
    I also have polycystic kidneys but I don't think that can be part of it.
    I'm wondering if there is a connection there. I was told that my one deformed kidney looks polycystic but that term isn't used unless both kidneys have cysts, not just one. So maybe it IS something to do with filtration.

    I'm sorry you're in such a bad flare right now, Nogo, and anyone else who is suffering too.

    And GoldSeals, it looks like you drew the short straw - being a man with IC - but i hope things improve for you. Remember to stay away from those cola drinks!

    Leave a comment:


  • nogo
    replied
    RIght now I am in a pee every few minutes flare and it has lasted for a couple of weeks with just a little reprieve now and then. I truly think I am going to go mad. But, sometimes I too have those periods where I pee tons and tons of clear urine. I'd swear a bottle of water went right through me without touching the kidneys. Weird. But, I notice it happens when I get Migraines. I have the horrible headache, but keep having to get up to pee gallons of clear liquid when I just want to be lying down. Something inhibits the antidiuretic hormone during those attacks and it makes me pee. I also have polycystic kidneys but I don't think that can be part of it.

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  • GoldSeals
    replied
    Hi,Jiriji,
    Between both of your comments.I have the same problem.My urine is clear and plenty of it just out of nowhere.My doctor checked for diabetes several times and it was negative.I believe they just dont know.That is the answer.It doesnt matter if your male or female.As a male, the doctors just give me same beweilderment look.I can tell you that grapefruit juice is a diaretic.If I was to drink it I wouldnt be able to move from the bathroom.Oh,and diet coke makes me pee like a race horse.Thats why I dont go near it at all.And the urine is always very clear after drinking it.
    Like I said in the previous post I believe the bladder communicates somehow with the bladder and tells it to produce more urine.It sure seems that way.Sure wish I knew the answers.
    GoldSeals

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  • jiriji
    replied
    Originally posted by CST View Post
    Hi,
    You might want to have your doctor check your thryroid....
    I've been on thyroid medication since 1990 (200mcg of thyroxin each day) and my thyroid doesn't work at all any more, but thanks for the suggestion anyway

    The weird thing is last night i didn't need to get up to pee AT ALL, yet i had been drinking right up until bedtime. The difference is last night i took two Tylenol PMs because i was having such bad pain in my right leg and really needed some sleep. I suspect that the antihistamine in the pills, as well as having a dehydrating effect, also has a calming effect on the bladder - and possibly the kidneys as well.

    I do have one deformed kidney, which has an extra cyst or pouch where the ureter connects, and that ureter also has a kink in it which can lead to the flow or urine from the kidney to the bladder being interrupted, but the urologist told me the treatment for that is very simple: just drink lots of water to keep everything moving in the right direction :-) Maybe what happens is now and then there's a backup of urine that is blocked from getting through, then all of a sudden it's all released, sort of like a dam wall giving way (but that wouldn't explain my urine being colorless) - anyway, when i suggested that to the doctor he looked kind of sceptical.

    Sometimes i think male doctors don't pay much attention to what their female patients are telling them. I wonder if it would be different if i were a male with a prostate problem?

    Leave a comment:


  • GoldSeals
    replied
    Originally posted by born2swim View Post
    Yes, I have passed loads of clear urine. If I eat peanut butter or chocolate or something that isn't good for me, but doesn't make my urge go through the roof, I will pee often due to a larger volume in urine. It's like my kidneys are diluting something bad and my bladder is unable to hold much volume (150cc's was my max).

    I'm with you on that. I get it after something questionable was consumed... but when something bad bad bad (like coffee or tea) is consumed, I'm peeing 1 teaspoon at a time every 5 minutes for hours. I don't sleep at all. So, there is a difference... It's weird.
    Hi Born2swim an jiriji,
    This is a mirror of my problems that ive been having for years.I mean its like a faucet coming out sometimes.I have another theory.Maybe the bladder is somehow communicating with the kidneys and somehow telling them to produce more urine.Afterall the bladder tells the brain when it seems to be full.At leasts thats in a normal person.
    A few years ago the urologist gave me a nasal spray that I had requested doing research on the same frequent urination subject.Its used to stop all urine production.I had it in my refrigerator for ages.I was to chicken to try it out.
    The urologist told me that it was only to be used in a dire case emergency and I was to drink no liquid at all after inhaling it.The side effects would be water intoxification.Anotherwords I could die from it.I cant recall the name of it other than it is a synthethitic hormone that stops all urine production.
    Its is used in adolescents to stop wetting the bed.Could the kidneys be stimulated with a hormone that produces all this urine?I know having a small bladder makes it feel like the kidneys are out of control.
    Just a theory maybe not.
    GoldSeals

    Leave a comment:


  • CST
    replied
    Hi,
    You might want to have your doctor check your thryroid. I have Grave's disease (on top of the IC), which is hyperactive thryoid disease. (not HYPOactive, which is the opposite), In Grave's, the body metabolism is very speeded up, even urine output, and since I developed Grave's, I've noticed a worsening of my IC, with more urine being produced or at least that's what it feels like to me. Urine output is very complex, and a variety of hormones stimulate the kidneys to produce urine. You might want to have more sophisticated bloodwork or other tests of your kidneys done just to make sure there's no underlying kidney problem. I'm surprised that a urologist wouldn't know about the various health problems that can cause the kidneys to overact like that. (yes, diabetes being another one with urinary frequency). In classic kidney disease (not saying you have that at all), the kidneys are trying to dilute extra toxins in the bloodstream because the kidneys are working properly, and they produce a lot of urine doing that. I mean, there's lots of different reasons for increased urine production. I've also noticed more urine production before and during my period - again, I think there may be some hormone tie-in on that. Sometimes I wonder about doctors......

    Leave a comment:


  • Trishann
    replied
    If I don't drink enough water during the day it seems to be worse then at night.
    I do go plenty of times anyway but this does help somewhat.

    Take care, Trishann

    Leave a comment:


  • jiriji
    replied
    I've been avoiding caffeine and other acidic foods and drinks for months now, and i also take Prelief, and generally everything is fine. It's just this weird thing that happens every now and then that doesn't seem to have any cause.

    Oh well, things could be worse... at least it's not painful when i pee volumes like that!

    Leave a comment:


  • born2swim
    replied
    Yes, I have passed loads of clear urine. If I eat peanut butter or chocolate or something that isn't good for me, but doesn't make my urge go through the roof, I will pee often due to a larger volume in urine. It's like my kidneys are diluting something bad and my bladder is unable to hold much volume (150cc's was my max).

    I'm with you on that. I get it after something questionable was consumed... but when something bad bad bad (like coffee or tea) is consumed, I'm peeing 1 teaspoon at a time every 5 minutes for hours. I don't sleep at all. So, there is a difference... It's weird.

    Leave a comment:


  • Kara29
    replied
    The ICN patient Handbook may be of some help for you as well as talking to your Doctor about what you can do to feel better. There is a whole section regarding diet and IC: http://www.ic-network.com/handbook/diet.html#topfive

    Kara

    Leave a comment:


  • jiriji
    replied
    "I know if I eat certain foods during the day it can cause me to go all night"

    Leelee, which foods in particular do this to you? I know different foods probably affect different people, but knowing some of them would be a good starting point for me.

    Leave a comment:


  • GWENDOLYN
    replied
    If I wake up, I have to pee, but it doesn't wake me up. I would say maybe 2 to 3 times a night. In the beginning when I started having symptoms, I would go and then feel like I would have to go again right after and I think it was due to the energy drinks I was drinking. If I drink water with 1/ 2 teaspoon of baking soda when I feel frequency coming on, it seems to help.

    Leave a comment:


  • GriffsMommy
    replied
    Personally it just seems to be part of the flaring process for me. I've never been too bad about going at night, but this morning for instance I only had a little bit to drink to take my meds and I've been peeing alot, maybe every 30 minutes. My urine is not yellow, I just attribute it to flaring.

    Leave a comment:


  • leelee88
    replied
    Each time you do this check to see what you ate that day.. Your diet can cause this.. I know if I eat certain foods during the day it can cause me to go all night

    Ronda

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  • L. Thomas
    replied
    When I don't do my treatment I go every 30-45 minutes day and night. When I do treatment I normally every 2-3 hours during the day and I go 1-2 at night.

    My urine is always clear or very light yellow. That is what is normal for me. Urogyne said that isn't "rare" in paitents with IC but it is a little unusual. It is sometimes hard to see it in the catheter. If mine is "yellow" it means I haven't had enough fluid for the day. And believe it or not that is about the only time I have "pain".

    Leave a comment:

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