Suffering from Kidney Stones: My Story

[turbo]

My former foreman's wife had a stone ultrasonically fragmented. She already had two children (both in HS by that time), and was screaming in pain when the stone passed to the bladder. My foreman was ready to assault the attending physician because his wife was not getting pain-killers strong enough to keep her out of pain. According to her, giving birth was not even close to passing stones.

 

[Evo]

Which type of stone are you forming jimmy? I just read up on them for the last 5 minutes, so I am an expert now.

 

[Jimmy Snyder]

Which type of stone are you forming jimmy? I just read up on them for the last 5 minutes, so I am an expert now.

I have a long and illustrious history of kidney stones.
The first stone I passed was probably when I first had sex. I didn't know it was a stone at the time, I thought that my ball had turned upside down. Anyway she wanted me to finish up what I had started and I just wanted to roll over and die.
The second stone occurred just after I had a bout of hepatitis. I told the doctor that I had a relapse because my urine was brown again. He said that it was blood. He cut me and took out a stone made of uric acid. He said I should take alipurinol (sp?) and I did for a while, but when I moved to Japan I stopped.
I passed a few sporadic stones after that. They were painful, but I didn't treat them and they all passed.
When I got back to the states, I had one that got stuck in my ureter and ballooned it out. That one was made of calcium. My urologist put me through a bunch of tests including a 24 hour urine test, but he said the results were inconclusive. He couldn't say what was causing the stones nor could he recommend any treatment, dietary or otherwise.
After that I had couple of stones removed by ultrasound lithotripsy. then I started passing stones at the rate of about 2 a year and not seeing the urologist since they all passed without discomfort. I hated all the treatments and since there was no pain, I figured there was no problem. During those years a huge stone was growing in my kidney reaching to an inch in diameter. That was removed by laser lithotripsy through a hole in my back.
Since then I have had an x-ray and ultrasound (not lithotripsy, just a picture to see if the stone was a boy or a girl) every year. My doctor looks at the stones, tells me there's a few more than last year, they're growing and do I want to do anything about it? I say no, he says ok, and so another year goes by.
Now he says there are too many stones in there to leave alone and some are too large for ultrasound lithotripsy and I should have them treated. He didn't say so, but I know he means laser lithotripsy. Another hole in the back, perhaps two. He also said that he wants to repeat the tests to find out why I produce so many stones. His facial expression was like mine when there's a problem I want to solve and can't move on until I do. That's where matters stand now.
I am passing a stone as I write this. I was in considerable pain an hour ago, but I took my pain killer and either the stone has settled into a comfortable spot, or the pain killer kicked in, I don't know which. If I need more pain killer then I won't be able to work tomorrow.

 

[Evo]

I have a long and illustrious history of kidney stones.
The first stone I passed was probably when I first had sex. I didn't know it was a stone at the time, I thought that my ball had turned upside down. Anyway she wanted me to finish up what I had started and I just wanted to roll over and die.
The second stone occurred just after I had a bout of hepatitis. I told the doctor that I had a relapse because my urine was brown again. He said that it was blood. He cut me and took out a stone made of uric acid. He said I should take alipurinol (sp?) and I did for a while, but when I moved to Japan I stopped.
I passed a few sporadic stones after that. They were painful, but I didn't treat them and they all passed.
When I got back to the states, I had one that got stuck in my ureter and ballooned it out. That one was made of calcium. My urologist put me through a bunch of tests including a 24 hour urine test, but he said the results were inconclusive. He couldn't say what was causing the stones nor could he recommend any treatment, dietary or otherwise.
After that I had couple of stones removed by ultrasound lithotripsy. then I started passing stones at the rate of about 2 a year and not seeing the urologist since they all passed without discomfort. I hated all the treatments and since there was no pain, I figured there was no problem. During those years a huge stone was growing in my kidney reaching to an inch in diameter. That was removed by laser lithotripsy through a hole in my back.
Since then I have had an x-ray and ultrasound (not lithotripsy, just a picture to see if the stone was a boy or a girl) every year. My doctor looks at the stones, tells me there's a few more than last year, they're growing and do I want to do anything about it? I say no, he says ok, and so another year goes by.
Now he says there are too many stones in there to leave alone and some are too large for ultrasound lithotripsy and I should have them treated. He didn't say so, but I know he means laser lithotripsy. Another hole in the back, perhaps two. He also said that he wants to repeat the tests to find out why I produce so many stones. His facial expression was like mine when there's a problem I want to solve and can't move on until I do. That's where matters stand now.
I am passing a stone as I write this. I was in considerable pain an hour ago, but I took my pain killer and either the stone has settled into a comfortable spot, or the pain killer kicked in, I don't know which. If I need more pain killer then I won't be able to work tomorrow.

OY!

Geeze, you poor thing. Are you able to sleep enough? When I started having recurring problems that caused me to be calling in every couple of days, my boss told me to go out on disability, he said it would be easier on him if he knew I wasn't coming in and he could assign people to handle my clients, plus short term disability is at 100% of pay. I know how hard it is to be ill and keep dragging yourself in on days when you can barely function.

I hope you and your doctor find something to help soon.

 

[Tsu]

Laser is not usually used for gall stones, (less than 15% are candidates for gall stone lithotripsy. This site tell tells the most common tx for gall stones.
http://www.uihealthcare.com/topics/digestivesystem/dige3507.html

Laser is usually the option of choice for kidney stones. No cutting into the skin is necessary as the scope goes up the urethra into the bladder and up the selected ureter and then blasted with the laser beam to break it up. Extracorporeal shock wave lithotripsy http://www.kidney.org/atoz/content/lithotripsy.cfm is becoming a very infrequently treatment for renal calc.

 

[Evo]

Laser is not usually used for gall stones, (less than 15% are candidates for gall stone lithotripsy. This site tell tells the most common tx for gall stones.
http://www.uihealthcare.com/topics/digestivesystem/dige3507.html

The link is for gall bladder removal.

The last time I was hospitalized for gall stones, 20+ years ago, the doctor said that destroying them with a laser was the way to go. Googling it, it seems that 20 years ago, that seemed to be gaining poularity, but now it seems the consensus is to just remove the gallbladder instead of removing the stones. Ayway, I stopped having attacks and my gall bladder seems fine.

 

[Jimmy Snyder]

Laser is usually the option of choice for kidney stones. No cutting into the skin is necessary as the scope goes up the urethra into the bladder and up the selected ureter and then blasted with the laser beam to break it up.

Laser lithotripsy is the name of the procedure I just underwent. As you say, no cutting. The doctor said he would cut the stone up, he didn't mention blasting. Blasting makes it seem like ultrasound lithotripsy. Anyway, this stone was in the ureter just a centimeter from the bladder. The one-inch diameter stone was in the kidney and was also removed by laser lithotripsy. In that case I was cut and a tube passed into the kidney through my back.

 

[Tsu]

The link is for gall bladder removal.

The last time I was hospitalized for gall stones, 20+ years ago, the doctor said that destroying them with a laser was the way to go. Googling it, it seems that 20 years ago, that seemed to be gaining poularity, but now it seems the consensus is to just remove the gallbladder instead of removing the stones. Ayway, I stopped having attacks and my gall bladder seems fine.

No, the link is for surgical treatment of gallSTONES. See title at the top. But, you're right about it being an outdated treatment and today we either go up the duct and 'basket' the stone or just remove the whole gallbag. http://www.uptodate.com/patients/content/topic.do?topicKey=~200KeMfoEiZvZ1 .

Laser lithotripsy is the name of the procedure I just underwent. As you say, no cutting. The doctor said he would cut the stone up, he didn't mention blasting. Blasting makes it seem like ultrasound lithotripsy. Anyway, this stone was in the ureter just a centimeter from the bladder. The one-inch diameter stone was in the kidney and was also removed by laser lithotripsy. In that case I was cut and a tube passed into the kidney through my back.

There is confusion here. Probably on my part... In the OR, the term "lithotripsy" is usually of the extracorporeal (meaning outside of the the body) shock wave type which does use ultrasound. The term we (meaning we xray people who do ALL of the the actual work of the hospital - the surgeon just stands there while we do all of the work No, REALLY! :rofl:) use for 'laser lithotripsy' is 'retrograde pyelogram'. The one inch stone is (i think) pretty uncommon. We've blasted big stones up close to the kidney, but I never seen one actually IN the kidney. Was it causing hydronephrosis (blocking the urine up into the kidney)?
Here is a site that explains it well... http://www.ucurology.net/minimallyinvasive/kid_ure_blad_stone.html

 

[Evo]

No, the link is for surgical treatment of gallSTONES. See title at the top.

Yeah, but the treatment it describes is surgical removal of the entire gallbladder. :tongue2: That apparently *is* the treatment nowdays, they no longer remove just the stones. So I was saying you're right.

 

[Jimmy Snyder]

There is confusion here. Probably on my part... In the OR, the term "lithotripsy" is usually of the extracorporeal (meaning outside of the the body) shock wave type which does use ultrasound. The term we (meaning we xray people who do ALL of the the actual work of the hospital - the surgeon just stands there while we do all of the work No, REALLY! :rofl:) use for 'laser lithotripsy' is 'retrograde pyelogram'. The one inch stone is (i think) pretty uncommon. We've blasted big stones up close to the kidney, but I never seen one actually IN the kidney. Was it causing hydronephrosis (blocking the urine up into the kidney)?

I'm one week ahead of you. I had ultrasound lithotripsy twice and each time I only heard the term lithotripsy. So, like you, I associated the word lithotripsy with ultrasound. But two weeks ago, when I left the doctor's office, I noticed lithotripsy on my prescription. Since the urologist only mentioned the basket and the laser, I asked him about it just before the procedure and he said that the term lithotripsy just means stone breaking and includes both procedures.
Both times I had ultrasound lithotripsy, it was for stones in the kidney. Because I was producing stones sporadically before the treatment, but twice a year after, I conjectured that there is a drawback to this treatment. It creates a pile of sand in the kidney and not all of it passes. The sand that remains forms the seeds of future stones. Although this was only a conjecture, I have read a similar description on the web since and now I am fairly convinced that this is not a good procedure. If the stone is in the ureter, then the sand would naturally flow out so that would be ok.
The one inch stone was not causing hydronephrosis, but the urologist said that if left untreated it most likely would eventually do so.

 

[Louise M]

It's a one way street from the kidneys out.

Oh I wish mine was a one way street. Unfortunately, I have a two lane super highway. So my stones can go up and down as they see fit. Oh the fun of reflux.

 

[Jimmy Snyder]

Oh I wish mine was a one way street. Unfortunately, I have a two lane super highway. So my stones can go up and down as they see fit. Oh the fun of reflux.

I thought I had been through it all, but I have been spared this one.
I'm not 100% sure what's happening to me now. A few hours after the doctor removed the stent yesterday, I started having stone pain. Today, I have been passing gravel like crazy, I harvested 6 pieces with a sieve. The largest one is about 2 mm which is small as my stones go, but it might have caused the pain yesterday. I can still feel gravel rattling around in my bladder. I wouldn't have expected gravel to pass today as a result of the lithotripsy last week. The stent passes into the kidney and my guess would be that when the stent was released, it disturbed some stones in the kidney and they came tumbling down.

 

[turbo]

I thought I had been through it all, but I have been spared this one.
I'm not 100% sure what's happening to me now. A few hours after the doctor removed the stent yesterday, I started having stone pain. Today, I have been passing gravel like crazy, I harvested 6 pieces with a sieve. The largest one is about 2 mm which is small as my stones go, but it might have caused the pain yesterday. I can still feel gravel rattling around in my bladder. I wouldn't have expected gravel to pass today as a result of the lithotripsy last week. The stent passes into the kidney and my guess would be that when the stent was released, it disturbed some stones in the kidney and they came tumbling down.

Not happy times, Jimmy! My thoughts are with you, friend.

 

[Borek]

OTOH, the more you pass, the less you have inside. That's not bad in the end. My sympathy is with you, Jimmy.

 

[Siv]

My sympathies with Jimmy too.

BTW there is a theory that calcium supplements without correcting vitamin D, vitamin K2 and magnesium deficiencies result in increased kidney stones.
Indiscriminate use of calcium supplements is now being increasingly blamed for a lot of things.

 

[Evo]

Hopefully losing all of these stones is a good thing.

 

[DaveC426913]

My sympathies with Jimmy too.

I'm still waiting for the punchline. Sometimes Jimmy is too subtle even for me.

 

[Siv]

I'm still waiting for the punchline. Sometimes Jimmy is too subtle even for me.

Aha ... interesting.

 

[rhody]

I didn't get the string. Instead, I went to the Doctor's office today and he went in and fished out the stent. I haven't been to work since Tuesday when he put it in. I've been pretty much in a drug induced stupor ever since. The stent is a tube that goes all the way from the kidney to the bladder. I think that when he pulled the stent he disturbed the stones in the kidney. Anyway now another stone is coming down and killing me so it's back to the drugs. I don't doubt I'll get fired over this.

Jimmy,

Had a close friend that just went through what you are enduring with the stent. I have had only two bouts with these nasty things in the past six years, the first from being too dehydrated, the second from believe it or not stress of a close family member passing, happened on the day of his funeral. Passed them on my own both times.

My own personal strategy is that I "never", repeat "never" allow myself to become dehydrated anymore, get up at least twice a night and drink water, I know it is a PITA but knock on wood I haven't had another attack since 2006. Also, don't drink any diet soda or if I do drink alcohol, I prefer fine aged tequila, I drink plenty of water with it as well. The pain, and fear of the pain reoccurring is what made me radically change. So far it has been working, maybe drinking fluids may help you as well.

I really hope you find a strategy that works for you, you have had way too many episodes. I cringed while reading your thread. Good luck.

Rhody...

 

[Moonbear]

use for 'laser lithotripsy' is 'retrograde pyelogram'.

I thought a retrograde pyelogram was just the imaging procedure where the radioopaque dye is introduced through the bladder to get transported up to the kidneys to look for the location of blocked ureters (as opposed to anterograde pyelograms where the dye is injected IV to be excreted through the kidney for imaging).

I'm pretty impressed with a 1" stone. I've never seen a kidney with room for a 1" stone before, and am surprised it isn't entirely blocking urine output from that kidney. The mischief the stones get into is because they have room to grow in part of the collecting system of the kidney called the renal pelvis, which is basically a big waiting room right before the narrow ureter starts. Really a bad design, because the stones can grow and fit in that renal pelvis and then don't fit down the ureter itself.

Sorry you're going through so much pain, Jimmy. If you're worried about your job, you might want to look into FEMLA rules to see if your extended medical treatment qualifies you for job protection under that law.

 

[bobze]

Hey Jimmy or any of the stone sufferers, just a curiosity question for you. Have any of you had your cystine levels measured or has any doctor ever used the word "http://en.wikipedia.org/wiki/Cystinuria" " with you?

A bit about cystinuria from the above link;

"Cystinuria is an inherited autosomal recessive[1] metabolic disorder that is characterized by the formation of cystine stones in the kidneys, ureter, and bladder. Cystinuria is a cause of persistent kidney stones. It is a disorder involving the defective transepithelial transport of cystine and dibasic amino acids in the kidney and intestine, and is one of many causes of kidney stones. If not treated properly, the disorder could cause serious damage to the kidneys and surrounding organs, and in some rare cases death. The stones may be identified by a positive nitroprusside cyanide test. The crystals are usually hexagonal, translucent, white. Upon removal, the stones may be pink or yellow in color, but later they turn to greenish due to exposure to air.Cystinuria is characterized by the inadequate reabsorption of cystine in the proximal convoluted tubules during the filtering process in the kidneys, thus resulting in an excessive concentration of this amino acid in the urine. Cystine may precipitate out of the urine, if the urine is neutral or acidic, and form crystals or stones in the kidneys, ureters, or bladder. It is one of several inborn errors of metabolism included in the Garrod's tetrad. The disorder is attributed to deficiency in transport and metabolism of amino acids."

I don't think much is known about the occurrence and epidemiology of the disease, as many of the amino acid transporter genetic defects are relatively new to science (thus could easily be over looked by a nephorlogist or urologist not up to date on their literature).

Anyway, since you seem have no cause for your stone problems, just possibly another avenue you could look into (this is not a diagnosis). Maybe you could even try an experiment with a low protein diet and see if that helps alleviate the formation of the stones (forgive me if this has been brought up or tried, I didn't read the whole topic).

 

[Jimmy Snyder]

cystinuria

I'll bring this up with the urologist. I doubt that he hasn't heard of it though and he is seriously looking at all possibilities. I have harvested a large number of stones that I keep in a little jewel box. None of them has turned green.

 

[Jimmy Snyder]

I passed a 2mm stone about two weeks ago and another 2mm one today. There are stones in my kidney now that are too big to pass and so on Feb 4th I'm going to have ultrasound lithotripsy to smash them up. I want them out of me before the 15th because I intend to change insurance companies at that time and I don't want these stones to be a pre-existing condition. Ultrasound lithotripsy doesn't remove stones, it just smashes them up into smaller smoother pieces which then hopefully pass out of the kidney. My stones tend to be jagged and the smoothing action will be appreciated. The idea is to smash them into pieces so small that if they leave the kidney and start down the ureter, they will not get stuck along the way. If they fail to leave the kidney, then I assume they will become the seeds of new large stones.

 

[nismaratwork]

I passed a 2mm stone about two weeks ago and another 2mm one today. There are stones in my kidney now that are too big to pass and so on Feb 4th I'm going to have ultrasound lithotripsy to smash them up. I want them out of me before the 15th because I intend to change insurance companies at that time and I don't want these stones to be a pre-existing condition. Ultrasound lithotripsy doesn't remove stones, it just smashes them up into smaller smoother pieces which then hopefully pass out of the kidney. My stones tend to be jagged and the smoothing action will be appreciated. The idea is to smash them into pieces so small that if they leave the kidney and start down the ureter, they will not get stuck along the way. If they fail to leave the kidney, then I assume they will become the seeds of new large stones.

You have my most sincere sympathy... visceral pain is miserable. Hang in there man.

 

[rhody]

Jimmy,

I cringed when I read your post, hope the sonic waves make the little critters small enough to pass easily, if you don't mind me asking, have you changed your diet, lifestyle habits during this horrible ordeal, or are you one of the few rare folks who is more "prone" genetically to develop them ? I drink water in the middle of the night, every night, and never become dehydrated, have long since given up on any artificially sweetened soda, etc... It seems to keep them at bay, for me at least. I wish you the best, the pain is hard to bear. Stress seems to play a factor in me getting them as well, not that any of us can control all the stress in our lives.

Rhody...

 

[Jimmy Snyder]

Thanks, but these last two weren't painful at all. I have a dilated ureter due to a really bad stone a while back. Stones that pass on my right are actually hard to detect until they hit the bladder. I had some extensive tests to determine why I make so many stones, but they was inconclusive. Most of my family has passed at least one stone, but no one passes them like I do, I average about two a year in a quiet year, and 9 in one year.

 

[nismaratwork]

Thanks, but these last two weren't painful at all. I have a dilated ureter due to a really bad stone a while back. Stones that pass on my right are actually hard to detect until they hit the bladder. I had some extensive tests to determine why I make so many stones, but they was inconclusive. Most of my family has passed at least one stone, but no one passes them like I do, I average about two a year in a quiet year, and 9 in one year.

Well, I'm glad you're in no pain!

 

[rhody]

Well, I'm glad you're in no pain!

nismara, Jimmy,

That kind of blows my mind, imagine having enough stones over the years for the urters to either adapt or be gouged to a larger diameter, quite remarkable I must say, and good for you which means little, no pain.

Rhody...

PS I hope you don't mind, but is their a correlation between passing more stones in a given year and your overall stress level being higher than normal, the science geek in me is curious ?

 

[nismaratwork]

nismara, Jimmy,

That kind of blows my mind, imagine having enough stones over the years for the urters to either adapt or be gouged to a larger diameter, quite remarkable I must say, and good for you which means little, no pain.

Rhody...

PS I hope you don't mind, but is their a correlation between passing more stones in a given year and your overall stress level being higher than normal, the science geek in me in curious ?

It's at times like that that I'm really pleased I'm a head man...

I'd guess that the formation of stones is related to either some basic way that calcium is being metabolized, or more likely, there is some other source of sediment that serves as a nucleation site for NORMAL blood levels.

I'm just glad to see someone on top of their condition, and to adapt so well that you can pass stones without pain? I'm sorry you've had to pass so many, but that's definitely a decent 'super power'.

Actually, you should just tell people that this is your "mutant power"; you pass kidney stones without wincing, and often!

 

[Jimmy Snyder]

imagine having enough stones over the years for the urters to either adapt or be gouged to a larger diameter

...

PS I hope you don't mind, but is their a correlation between passing more stones in a given year and your overall stress level being higher than normal, the science geek in me is curious ?

What happened about 10 years ago was that a fairly large stone left the kidney and started down the ureter but got stuck about 2/3 of the way to the bladder. It blocked up the tube so water could not pass and as a result the ureter, which is about the diameter of a pencil lead, dilated to about the diameter of a pencil. It never contracted and so stones that pass on my right are difficult to detect. By the way, the blockage of water is what causes the worst stone pain.

I don't know if there is a correlation between stress and the passing of stones.

 

[Jimmy Snyder]

I've been through the mill with these stones, but now I am experiencing a new phenomenon. There is a pile of 5 or 6 stones in my bladder all trying to get out at the same time. My prostate gland is enlarged and restricts the passage to the outside. As a result of this combination of conditions, even though a stone in the bladder would normally pass without event, nothing is moving. Next week the urologist is going to catheterize me and pull the stones out.