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Discussion Starter #1
Hi all.
Thought Id post about this, since I cant go out and enjoy my tractor, or much of anything else right now.

Ive been dealing with kidney stones for quite a while now. Had my first one about 13-14 years ago, and seem to be on the every few years recurring stone theme.
Anyone else have this kind of fun?

The latest made an appearance about 6 months ago, and got bad enough that I went to the doctor in May. Didnt want to go on vacation with this mess after all. Well, turns out they wanted to do the shockwave lithotripsy, which Ive not had before. The machine is owned by a private company that transports it to local hospitals once a week. They called 15 hours before my scheduled surgery and wanted a pre-payment. Nope. I dont pre-pay much of anything, and certainly nothing thats going to involve insurance.
Anyway, I cancelled the surgery appointment, and went about my business until last Saturday. About 2pm, they (I actually had two on the right side) made their appearance known again, in a BIG way. I had the laser surgery yesterday, and they are gone, but I now have a stent in place until Wednesday or Thursday.
Ill say that each time Ive had one has been a bit different, but they all are at the least very uncomfortable. At times its almost like having a stone again, but its not constant, and I know it will end when the stent comes out so that helps.

What Ive figured out in my case is that its stress related, and may be food/drink related too, but that I can fix. My stones are Oxilate stones, so I need to avoid foods with oxilate, or at the least cut back and make sure Im drinking a LOT of water. Lemon juice helps too.
The stress part I cant do much about, as it seems to coincide with the kids toddler stages, lol. Sounds funny, but kids will be kids, and they can be very stressful at times. In my case, when my first was between 6mos and 2 years I had stones. None until my second was about 1-2, and I had them for about a year or so. None until the latest child. He will be 3 at the end of the month, and I assume that things will die down a bit soon. By 4, I assume everything will be fine.
Diet changes are fun, Ive tried in the past, but nothing much helped.

What Ive learned from all of this:
People with good intentions will tell you all about how to avoid stones while having no clue what they are talking about.
Trust me when I tell you that people who havent had them know what causes them, and they all say its coke or some such thing. They are wrong. You need to know what kind of stones you have and plan accordingly. Even then it doesnt always work. If you are prone to getting stones, you are just going to have to do your best at keeping over hydrated.

I was told something the other day that made sense, that avoiding brown drinks is best for those prone to stones. Thats coffee, tea and coke (pop).
For me, the coffee isnt a problem, as Ive never been a coffee drinker. Coke on the other hand, not so easy. I did give it up once before and had no change in stone production, but shortly after began drinking tea. This time around, none of the above. Or at least my plan is none at home. We dont eat out often, but I figure when we do, a coke on those rare occasions wont hurt. In discussing this with my doctor, the tea has oxilate, so thats a big no no, and the caffeine in the others acts as a diuretic and dehydrates you, and that doesnt help with stones.
Not drinking those things certainly wont hurt my waistline.

Lots of foods have oxilate or cause it in your body. This will be a hard one for me too, unless I just go with pizza for every meal.
Ive decided that since I am not getting any younger, that I need to be on somewhat of a diet anyway and this will help.

I also plan to start exercising more too, outdoor work is good, but its not always the same thing. Most of my work outdoors is back and arm work, no legs, etc. Im considerable older than most people with a 3 year old running around, and Id rather be in pretty good shape as he gets older and wants to work with me. Regular exercise reduces stress too, and in my case, Ill take all of that I can get!

By the way, this is surgery #6 over that time span for stone removal. Ive passes several others. Best guess is 15 or so stones passes or removed.
I can say too that for those who dont know, and have heard the pain is bad, its worse than you think.
My sister had her kids naturally, and said stones are worse than childbirth.
In my case, Ive broken my back and my shoulder blade in a motorcycle accident, and this is WAY worse. Some are worse than others, and Ive had a few that were nothing more than a mild annoyance. But then I have a high pain tolerance, so theres that too. When I broke my back/shoulder, I went back to work 3 days later. One of the stones I had to have removed was 10mm, and I had that one for about 7 months before I finally gave in and went to the doctor.
 

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I can not image what it feels like.

Just to lighten the mood a bit - if you think your toddlers give you stress, be prepared for the teenage years....

And the medical know-it-all’s - if I could count the times on my hands....oh, I know how you feel, my xxxxxxx has arthritis too.
While I do have Osteo Arthritis , what I really have is Rheumatoid Arthritis. You think you know how it feels? How about trading with me for 24 hours......

I know at least one of our regular members here had a terrible time lately with kidney stones. He doesn’t have medical insurance and tried to tough it out for a long time. I just can’t imagine the agony.

Stress - the root of so many problems. I know for a fact that stress will kick my RA into overdrive. I work very hard each and everyday to stay calm and try my best to avoid any and all stressful situations. But with all that Mrs. C is going through right now with the local incompetent medical community it’s hard - very hard.

Easy for me to say - I have no kids at home.
 

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Back in the mid 1980's, a co-worker had stone(s) ,, it looked like he needed surgery.
his doc recommended trying the "new" ultrasonic shattering of the stones,,
They put him in a tank of water, some vibration occurred,,
It worked, the pain was gone in a day or so, but, it turns out the insurance refused to cover this "experimental" treatment,,,

The guy had to fight with the insurance for 6 months, trying to explain the procedure was only a fraction of the cost of surgery,,

Finally, the insurance covered the procedure,,,:flag_of_truce:

Just a little side note to try to amuse you until the pain is gone,,,:dunno:

In the mean time,, I am going to get another bottle of water!! :good2:
 

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Discussion Starter #4
Just to lighten the mood a bit - if you think your toddlers give you stress, be prepared for the teenage years....
Yeah, but by then I can lay down the law, and it gets mostly followed. The older two (14 and 10) are good kids and I expect the youngest to turn out the same, so really I dont have to do much law laying down, except for their room. They clean it, then a day later it looks like a tornado went through there.
Sure, they might end up like me in my youth, but thats still not too awful, lol.
Im honestly more concerned about the whole dating thing. My little girls will always be that to me...but they arent so little anymore.
I do own a backhoe now though...:lol:

Most of the toddler stress is trying to get anything done, while they want to help, ask questions, not do what you want, or dont understand why they cant do something, or whatever.
Heck, half the time I spend 5 minutes trying to figure out what hes saying to me...lol.
Diapers, day care, etc...good grief, Im going to get another stone just thinking about all that!

I certainly feel for anyone who has had these, especially those who cant afford insurance or the doctor.
Insurance stinks these days. I waited quite a while to go to the doctor because with ours, the first part is all out of pocket. We dont visit the doctor too much, so that means this is likely all out of pocket. Not fun either, when before about 2010, when I had the same surgery, at the same hospital, by the same doctor, we were only out about $800. Interestingly enough, the bills between then and now arent all that much different in total cost...its just that insurance doesnt work like it used to.

Years ago I tried all sorts of crazy remedies. Coke and asparagus was one, man that was awful, and didnt work. Olive oil and lemon juice was another, worse than the other one, and it also didnt work. Ive tried a few different pills that claim to work wonders, none do.
Ive just come to grips with the fact that Im just going to have to avoid certain foods and drink myself silly with water.
 

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I know what you mean with insurance. For the longest time I had a $6k deductible. Nothing kicked in until then even for prescriptions. At that time we were lucky - no docs and only 1 med for Mrs. C. I considered it nothing more than catastrophic insurance.

You’ve reminded me about the toddler stage - funny how one forgets about the details like that. Been almost 30 years for me. My daughter went from having colic, to teething, then straight into the terrible twos. But after that she was always my best bud.

And pain doesn’t help with ones patience or tolerance. I could never do it now!
 

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I have a 12+mm Stone in my Left and a 5mm in my Right Kidney. I have had Lithotripsy done 3 times now, one worked and two did not. They got the stones out the first time but they came back fast? Now they want to cut them out and I said no because I would be the first at the Spokane VA Hospital getting it done! They were going to show how it was done on me and train a doctor to do it??? Not on me that was close to 4 years ago but when those crushed/blown up ones start moving I am ready for it. I got rid of a 12mm one before the first time and strained it for them using a screen. They were the same as yours were. I was told if they don't mess with your kidney best leave it alone then cut out the 12mm one I have. They will just wait till it get's bigger? I do watch in it all xrays taken.
 

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In my academic days I did research on pain control. Like most folks in that research area, among the evaluation tools we used was a visual analog scale - basically like a old time mercury thermometer. Zero was no pain. The high end, or 100, was "the worst pain possible." Then you could assign a number to pain intensity so you could use statistics.

When I gave lectures on the subject, it never failed that someone in the audience would raise his hand to ask me if I'd ever had a kidney stone. I'd say no, and the next comment would always be "well, pain from a kidney stone is way higher than 100." And usually about a half-dozen other people in the room would chime in with their "my stone was bigger and hurt more than yours" personal stories.
.:soapbox:
 

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Discussion Starter #9 (Edited)
In my academic days I did research on pain control. Like most folks in that research area, among the evaluation tools we used was a visual analog scale - basically like a old time mercury thermometer. Zero was no pain. The high end, or 100, was "the worst pain possible." Then you could assign a number to pain intensity so you could use statistics.

When I gave lectures on the subject, it never failed that someone in the audience would raise his hand to ask me if I'd ever had a kidney stone. I'd say no, and the next comment would always be "well, pain from a kidney stone is way higher than 100." And usually about a half-dozen other people in the room would chime in with their "my stone was bigger and hurt more than yours" personal stories.
.:soapbox:
On the doctors office scale, the 1-10, I always just say mine has been adjusted by kidney stones. I mean really, if the worst youve ever done is stub your toe, to you, thats a 10. Once you have a stone, thats more like a 2.

Ive had some nasty pains in my somewhat short time on earth.
Id honestly say that pain without regard for time, its not the worst. The worst is a Taser. Not those little handheld shocky things people get at flea markets or whatever that they like to call a taser, but the real deal. The X26 Taser. 5 seconds on that thing is an eternity. Hurts like hell then gets worse. And worse. And worse. Right before you are 100% positive you are going to burst into flames, it stops. Those little handheld stun guns, and please, lets call them that because thats what they actually are, dont hold a candle to a real Taser. They dont work the same, and dont do the same thing. Oh, and Ive got a nice video of me getting tasered too...for posterity I guess, :lol: The things I do for work. :lolol:

Pain over time? Nothing beats a kidney stone. I cant say one is worse than another, but I do understand why people would say that "mine is worse than yours" stuff, because its hard to fathom that someone else could experience a worse pain than that.
The worst I had was the first, and Id bet thats most peoples experience. That one had to be cut out. They had to cut the ureter to get it out. Recovery wasnt too bad, but thats why I hate stents now. Id go into detail, but nobody really wants to know what its like, lol.
 

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Pain is relative. Every time I go to either of my docs they ask me to rate my current pain from 0 to 10. I use a chart like this for myself -

EF471CDF-B7BD-4BD3-AA70-3BDF2E116634.jpg

But for everyone it is different. What feels like a 7 to me might feel like a 9 or a 5 to someone else just like you said. My wife who has been a chronic pain suffered for over 10 years told me a few years back that she always told them 11. You can’t do that....

I always wondered how the docs really assess pain.

From my personal experience I know what works to relieve some of the pain. I read somewhere a while ago that the docs will not prescribe you something that takes all the pain away - only enough to take the edge off. That’s all well and good I guess but when you have chronic pain that goes on for years you will eventually go out of your mind.
 

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I had a uncle with kidney stones. He didn't know it at the time. This was in the Vietnam era when they were drafting folks. He didn't want to be in the army so he waited until his draft notice came and then immediately enlisted in the Navy. Shortly before he was to report for basic training he had a major kidney stone attack. I forget what all they did but they weren't able to remove or destroy all of them. He ended up getting a honorable discharge from the Navy without serving a single day.
 

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On the doctors office scale, the 1-10, I always just say mine has been adjusted by kidney stones. I mean really, if the worst youve ever done is stub your toe, to you, thats a 10. Once you have a stone, thats more like a 2.

Ive had some nasty pains in my somewhat short time on earth.
Id honestly say that pain without regard for time, its not the worst. The worst is a Taser. Not those little handheld shocky things people get at flea markets or whatever that they like to call a taser, but the real deal. The X26 Taser. 5 seconds on that thing is an eternity. Hurts like hell then gets worse. And worse. And worse. Right before you are 100% positive you are going to burst into flames, it stops. Those little handheld stun guns, and please, lets call them that because thats what they actually are, dont hold a candle to a real Taser. They dont work the same, and dont do the same thing. Oh, and Ive got a nice video of me getting tasered too...for posterity I guess, :lol: The things I do for work. :lolol:

Pain over time? Nothing beats a kidney stone. I cant say one is worse than another, but I do understand why people would say that "mine is worse than yours" stuff, because its hard to fathom that someone else could experience a worse pain than that.
The worst I had was the first, and Id bet thats most peoples experience. That one had to be cut out. They had to cut the ureter to get it out. Recovery wasnt too bad, but thats why I hate stents now. Id go into detail, but nobody really wants to know what its like, lol.
Hemorrhoid surgery should be right up there. Nothing like passing a football wrapped in barbed wire every day; was off work for a month...one of the doctors there at the Health Department was back to work after bypass surgery a lot quicker than that.

I'll skip the taser thank you!
 

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I get kidney stones now too. The pain is fantastic. Since I also have had a broken back, gout attacks, psoriatic arthritis attacks and live in constant pain from all the uric acid building up in my body its hard to say which one is the worst since all of the cripple me and the er is where i end up. Sometimes by ambulance other times in our truck or car. Mine are uric acid and I have a big one in my left kidney that my dr says he wants to leave alone unless it starts to be a problem. The last one I had not that long ago he said was a piece breaking off and I was able to catch it with the screen. Either way they suck and for all of those that get them know what I am talking about.

I love when people say they know my pain. I would love to guve them a taste of what I go through on a daily basis and then hit them with a full body attack like I get at times. They wouldnt make it a hour..

For all those suffering now I can say I feel you and I hope that you dont have to suffer anymore.

Fel better!
WB
 

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I get kidney stones now too. The pain is fantastic. Since I also have had a broken back, gout attacks, psoriatic arthritis attacks and live in constant pain from all the uric acid building up in my body its hard to say which one is the worst since all of the cripple me and the er is where i end up. Sometimes by ambulance other times in our truck or car. Mine are uric acid and I have a big one in my left kidney that my dr says he wants to leave alone unless it starts to be a problem. The last one I had not that long ago he said was a piece breaking off and I was able to catch it with the screen. Either way they suck and for all of those that get them know what I am talking about.

I love when people say they know my pain. I would love to guve them a taste of what I go through on a daily basis and then hit them with a full body attack like I get at times. They wouldnt make it a hour..

For all those suffering now I can say I feel you and I hope that you dont have to suffer anymore.

Fel better!
WB
Amen! I seem to think like that especially when getting dicked around by medical “professionals”. I want so badly to say “how about trading bodies with me for 24 hours” and see how they feel when they can’t get a simple prescription right and sent to the pharmacy.
 

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Had my first bout with stones back in 78 and have been dealing with them every couple of years since. Mostly hereditary, dad had them, sister gets them. Have changed diet many times over the past 40 years, doesn't make a difference with me. Also have had just about every means out there to have them removed: removed through existing opening, lithotrypsy, laser, and percutaneous nephrostomy (tube through back into kidney).

As mentioned by others, the pain is off the charts when you have a mover in the ureter. Nothing feels better than when you are in the ER and they confirm on the x-ray that you have a stone and the order is given for some happy juice. Once they hit the IV with the good stuff, you can just feel everything go bye-bye as a nice calm starts in your head and moves down the body. Anytime I get pain meds for stones or my hip, I try to hang on to a few just in case I have stone issues. The Rx meds aren't as good as the juice, but they do keep the edge off.

My problem for the last 10 years is that I tend to grow them big and deep in the kidney so there is no chance of them coming out on their own. Usually I know they are there when I drink a lot of fluids and the kidney will back up because they are blocking the exit and the fluid drains slow. Not as bad of a pain as a mover, but still uncomfortable.

Lately I have been popping out some small ones (up to 3 mm) without even knowing I had a mover. There is so much scarring and enlargement of my left ureter that I don't feel the smaller ones, but these are as big as ones that sent me to the ER years ago.

Just one bit of advice for those who may experience this in the future (given to me by my urologist, I am NOT a doctor)....
Pain is a good sign, it indicates that the stone is still trying to move. If the pain stops and you do not pass the stone, it means it is lodged in the ureter.

One of these days they will come out with an affordable unit for the doctors and ERs to use for measuring pain. Some electrodes on the skull to measure electrical activity in the pain center of the brain, then they will know if your pain is really a 10 or just 2 looking for some good drugs.
 

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One of these days they will come out with an affordable unit for the doctors and ERs to use for measuring pain. Some electrodes on the skull to measure electrical activity in the pain center of the brain, then they will know if your pain is really a 10 or just 2 looking for some good drugs.
You would think with all the advances in the medical world over the past 20 years something like this would be available to them. Especially now with all the focus on pain meds in the forefront. I think that would solve a lot of these issues - separating the riff raff from the people who genuinely need it.
 

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GET A URINE STUDY DONE! Your dr. should be able to hook you up with a place that does urine studies. There is one in Ohio I believe where my specialist sent mine. there are MULTIPLE things that cause stones. Oxalates, caffeine and protein are among the top hitters. Dr's tell you iced tea this or that... GO FIND OUT!! Trust me. I had bouts with stones back in like 2000 then the mother of all stones in 2004! I went into a dr and was told the best option was lithotripsy.. It was supposed to be a 45 minutes in and out procedure. When I woke up some 9 hours later I was horrified to see my wife and mom hovering around me and my mom standing there at my bedside telling me that me previously deceased brother is watching over me......

When they told me what went on I couldn't believe it. The dr's were trying to get to the stone and had to dilate my ureter.. They tore it! long story short on this is that they had to place a nephrostomy tube in through my back into my kidney to drain my kidney while the ureter was given time to heal. I had to wear a leg bag for the tube to drain into. During this time the site where the tube went into my back became infected.. I was also admitted to the hospital about 3 weeks later after suffering from severe chills, nausea, and headaches along with a little trouble breathing. They told me in the ER that I was very lucky I came into the hospital. I was diagnosed with SEPSIS and a partially collapsed right lung.. conveniently enough the same side my torn ureter was on......

Later on they tried to pass a wire through the tube in my back to my kidney so they could later place a stent to further allow the ureter to heal. That was unsuccessful and was SUPER PAINFUL! I visited with my "dr" again and we determined the next course of action was ureter re implantation. Two options.. Traditional surgery ( long incision and heal time ) or new fangled robotic method. WELL here is where it got BETTER! The robotic surgery was fine. No complaints about healing from that. Small incisions not much pain if any at all!! Problem was that it was supposed to be a 4 hour surgery. 9 and half hours later I wake up not being able to move my right arm and having severe pain in it!!!! oh ya. I swear to god. Come to find out later that there was complications.. Really? no way... never saw that coming!

During replantation of the right ureter they need to move your bladder up to relieve tension of the now shortened ureter. In cutting away the connective tissues they clipped my good LEFT ureter leaving me now with two re implanted ureters! They then tie you bladder to your soas tendon with a process known as soas hitch. What was the pain in my arm?? They didn't do a good job attending to me and repositioning me while in surgery and someone never noticed the BP cuff came down around my elbow. That cut off circulation to my arm for an undetermined amount of time! It smashed my radial nerve in my arm causing me to be unable to lift my dominant arm and function normally for some time. I couldn't even feed my self. Soon after the arm developed bad blistering that became infected. To this day I have numbness in my fingers, wrist, forearm and cant feel needles in the elbow joint.

I was off work from presidents day in Feb. until sometime in JUNE when I returned to work. Now that my ureters are re implanted this posses another issue. At the end of the ureters there is a flap. This flap does not allow urine to go back UP to the kidneys when your bladder contracts telling you that you have to go. That being said when your bladder contracts and you don't have those flaps the urine can back flush causing about the same kind of pain as a kidney stone. Solution from the dr? go more often... nothing can be done! I haven't really had a horrible time with that part, you learn to deal with it and try not to hold it if you can help it. NOW since I don't have the flaps I am more prone to UTI's making their way to my kidneys. YUP. This past fathers day I spent in the ER. I got sick while camping. same symptoms as mentioned above. flu like symptoms, bad chills, kidney pain etc.. They diagnosed me with sepsis and ECOLI in my urine.. 2 weeks off work and picc line in my arm for home infusions of antibiotics.


PLEASE GUYS. DONT MESS AROUND!!! Get a urine study done and find out what EXACTLY causes your stones. They can put you on a maintenance drug to combat the issues your having. I take the same one they prescribe for gout. Allipurinol. It combats the combats URIC acid which is the result of the break down of protein ( meats etc ) I have been stone free since 2004 KNOCK ON WOOD. Bad part is I will need to see a kidney specialist / urologist the rest of my life because of a stone! and some subpar care... I am only 40 now....
 

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oh boy i didn't have no stones-but i can relate some to the pain they cause. a week after or so-after i had my new knee-replacement done. i ended up in the er around 2 am. i was taking a whiz and it just shut off going, just like u would of shut the kitchet facuet. and right before it shut off-it turned red in color. oh-boy-get the wife awake and we head for the pital.

go to er-and they look ya over and u have to tell ur life history-around 4or 5 am, the fella who had to do my test comes in. find out then later-my right kidney hasn't been working for the last 5 yrs.

wait i'm ahead of my self--2 weeks before that--i was in the same pital for kinda the same thing, on the weekend-same thing-and so i ended up staying for 2 weeks with a iv hooked up to antibiotics so my my knee wouldn't get infected, at that time still didn't know about my birth defects yet-in the tubes that drain ur kidneys into ur bladder. dr claimed a blood vessel had been laid over that tube. he said millions have the problem, and it only shows up in a person in their mid-50's, after a surgery where u had a tube inserted into ur bladder for a surgery. for some reason my right kidney didn't back up, while getting the antibiotics the first 2wks. i was only home for about 36 hrs till i right back at the pital-and then ahd the test, and they told me the right kidney was bad.:banghead: i laid in the er till around 2 pm the next day-getting a pain shoot every 1hr and 20 mins. till the dr installed a stent in me-along with a bag to drain the right kidney. i'm telling ya -the stuff that came out of me-looked as bad as when a deer walks around with a arrow or a bad shot with a gun causes. jeez-terrible looking stuff. took 9 days for it to drain out.

the kidney dr then sent me to pittsburgh, pa. to a dr out there he knew-and they had a specialized machine to operate on me. i watched it on u-tube before i had it done-amazing what they did. but it took somewhere between 41/2 to 5 1/2 hrs to do. i remember before they knocked me out-laying on the table-as i had to move certain ways-i kinda was on one side-and this big machine came down over my chest-or side-a dr sat on each side of me-and right before i went to sleep-they pulled what looked to me a periscope down to look thru-yelp-i was right. i had what i called bullet holes up one side of me then-where they stuck them -i can't remember the right name of them-but i thought for sure smoke was gonna come out of every hole of my body-as they cut thru my belly to find things:mocking: had to have a stent then for 6 weeks again.

that was in Sept.-or first wk of Oct. forget now. but then went back in Jan. for the right kidney to be removed-claimed their was no chance to repair it at all. all because of birth defects in tube.:banghead: that operation is when i had to have left ball and socket replaced due to my arthritis over the yrs. i woke up-heard them calling for some cart--his heart is crashing-so i figured i was going to the hill above our little town(cemetery)i just went back to sleep then. but----i woke up then later-found out my BS was 400 that morning-and they had given me to much insulin during the operation-and that caused my heart to crash-so i got the paddles, and some kind of drug-so i'm kinda glad they stuck that extra port in me before the operation-even though i *****ed a heck of fit about it that morning. long story about my veins back then.

another round of stents then. nice thing about that was, i was able to have the stents inserted in or out at my local pital thru my local kidney dr. only bad thing is the guy who knocks ya out-didn't hit my head hard enough the one time-and darn i felt this pulling and i bit my lower lip-and my dr said i started to call him very bad words then. so he told the other dr to hit me harder again:laugh: then i was out good enough so i didn't feel nuthing. oh-boy should of wrote this stuff down back then for sure-huh. that was the last stent-i had to have and he said it calcified in there.
i've been taking alporianol since the the late 90's for my gout-to control the uric acid so, maybe that has helped me with the stone part. i know i worked with a fella who had stones bad, i watched him peeing blood, and then heard the klunk in the urinal he wanted me to stand there in case he fell to the floor while passing it. this fella was a ex marine-gunny sergeant-done 2 tours in Vietnam in the day. that fella could sure work on the dock. but he had stones all the time it seemed. he just called me the other week to see how i was doing-and he told me he had a another round of them the week before.
 
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