Has anyone here suffered from chronic kidney stones?
Question posted by midwestma on 25 Jan 2010
Last updated on 13 June 2024
For at least the last 15 years I have formed kidney stones on a regular basis. 6 years ago I had 16 kidney stones in one month. They had to put a stint into my ureters and into my bladder because I was forming them so fast. I've had surgery once because I couldn't pass the stones one on each side about the size of a small marble. I have two stones again, and I'm in so much pain right now I want to scream!
I've seen a urologist the same one for years now, and he never seems compassionate about this. I am really frustrated. If anyone has ever had a stone you'll know what I mean. They can be so tiny and cause so much pain, and they are not smooth like you would think, they have like little burrs on them, that rip and tear each time they move down the ureter. And because of all this I can no longer empty my bladder completely, so periodically I have to self cath, something I loathe to do. Embarrassing to say the least, :( I can't help crying :( I'm so bummed right now... sorry for rambling..I'm just really down in the dumps today,and these kidney stones I have now don't help either. I did catch one in a strainer they gave me, after testing they said it was a calcium oxalate stone. But no answers on how to stop my body from producing these painful stones. Please help, any advice will be greatly appreciated.
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9 Answers
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retailstinker
14 June 2024
I am sorry you are going through this. My most important suggestion is that you go see a nephrologist, too! My urologist has made some mistakes and he's ok, but I need someone with what seems like more knowledge. Google says this: "A nephrologist is the best doctor to treat you if you have a condition that affects your kidneys or kidney function. A urologist is a doctor who specializes in diagnosing and treating conditions that affect your urinary system. Your urinary system includes your bladder, urethra, ureters and kidneys." Obviously, your kidneys aren't functioning properly if you constantly have stones. Another point of view might help a lot. I wish doctors would actually focus... like check your medicines to see if they impact your kidneys (I found one of mine does!! And really badly!!), ask you about your diet.
I know your pain - it is worse than pretty much any other pain I have ever had, and I've had some pain. I can't imagine having to self-cath, either. Get yourself a nephrologist to help with this! I wish you the best and hope you will get the nephrologist and talk to your urologist and primary care docs and tell them you're have it and need help. Such a shame that you have to beg for help, but that is not terribly uncommon at this point! Best to you -
Votes: +0
RA
RandyBeasley
23 Sep 2018
Suffered with yearly stone removal until put on potassium citrate and hydrochlorothiazide. The PC is like taking citric acid equivalent to 100s of glasses of lemonade in a single pill. The HCTZ is like running an extra water line through your kidneys. So one prevents them from forming while the other rinses it all away. I havent had a stone since starting this combo, and its been nearly three years.
Votes: +1
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retailstinker
14 June 2024
This is a great response! Talk to your urologist and your NEPHROLOGIST about these things and see if they can get you started!
PA
Pagevirginia
22 July 2018
It's got to be what you're eating and drinking! I can't sit here and give you a list of the do's and dont's but your dr. can for sure. I will say this tho. Everyone I know that has kidney stones drinks ice tea. Lemonade is very good for the kidney and water as well.
Votes: +0
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retailstinker
14 June 2024
Disagree!!! I have stones and haven't had tea in over 20 years! Sadly, doctors aren't as good the last 5 or 10 years in looking at all facts and helping patients about stuff. It's a real shame.
RE
rebrodz1203
21 Sep 2017
Howdy from Texas. I'm a 36 year old female and I've suffered from Kidney strones since I was 17. The last year or so, I started passing them weekly. Sometimes I feel drastic pain, where I even Passout. Other times they literally just pass. I could be at work and I feel a stone pass. It might sound gross but it's what I'm dealing with. Nothing works to get rid of them. In 2012 I had surgery to remove two huge stones. I refused the stent. My father got one in his Kidney and it made him even sicker. I'm in search of a new Urologist.
Votes: +1
GR
gramslwg
15 Aug 2017
I have been producing kidney stones on a daily basis since October 6, 2013. I had one surgery to remove stones that were to large to pass. Every day there are a lot of fragments and sand grain size debris that comes through. Included, I average 20 to 30 catchable stones as well. In any given week, I produce about 140 catchable stones. About every ten days, much larger stones come through at the upper limit of what it is possible to pass - this weekend, I had six very large stones that were preceded for a couple of days by a lot of blood and rubble. Most of the large stones are hard, yellowish, with some sharp edges. The smaller ones are a dark rust color. Lab analysis indicates that about half of the stones are calcium and half are uric acid. We've tried every dietary adjustment in the book with no tangible result. I have Multiple System Atrophy which was recently discovered to be associated with chronic stone production in some cases.
My nephrologist has given up on finding a solution. It's surprising to discover how much you can actually get used to pain, but the worst of the kidney stone pain is still about as bad as it gets - even after four major spine surgeries that were preceded by years of very bad spine pain and three years of chronic spinal headaches. It's hard to find any literature that addresses the issue of chronic stone production.
Votes: +0
SH
shortnsweeet
10 June 2013
I to have suffered from kidney stones for the past 15 years. I have had 87 surgeries to clean out or remove stones too big to pass. I have tried every diet, and drink lots of liquid to no avail. My left kidney used to be better than my right, but at any given time I now have 100's of stones in each. I am in constant pain, and therefore constantly taking pain meds. I usually take 50mg of gravol, 100 mg of Voltaren (suppository) and 4 mg of dilaudid. If that doesn't work, I go to emerg, where I usually end up having surgery for a massive stone. Any tricks you might have that you would like to share would be awesome. I know I'm tired of the pain, and so are my kids and granddaughter. Some days I just want to end it, but knowing that I have a child still at home is what prevents me. I pass at least 2-5 stones per day. I really don't have any advice except for what I take for pain. Have you tried Flomax, it also helps with the passing of the stones
Votes: +0
MO
moon121
22 Jan 2017
I have been having the same problem but for 2 years now and no one has no answers. I've had 13 surgeries due to stone blockages and i have stones almost everyday. All the doctors have done for me is give me t3's and referred me to chronic pain classes. If you have any advice to share i am all ears. Unfortunately the doctors say this is something i'm going to have to "just deal with" for the rest of my life.
BK
Bkarcz
29 March 2017
Just had my fourth stone and feel your frustration because nothing seems to prevent them. I read about apple cider vinegar and baking soda as natural remedies and tried them this time around. Teaspoon of baking soda in a cup of water first thing in the morning and the vinegar about an hour after eating seemed to help a lot. You can do this up to four times a day. I am going to try this for prevention but it's worth trying. Hopefully it helps one of you.
MI
mikemol7
8 June 2017
I have had maybe 10 over the last 25 years. Been getting about 1 a year recently. My piss is very red today and I hope its another kidney stone because it beats the alternative. My question is this. The first one, many years ago, came with agonizing pain and a multiple day hospital stay. Now, they come with very minimal pain and I don't even see a doctor. Is it possible that they get easier the more you have? The last one I passed was pretty big so its not a matter of them being smaller stones,
I have the same problem 2 weeks out of the month Im suffering from these things. No one can figure out how to stop producing them. They tell me I have multiple stones in both kidneys but there all passable and thats it. Mine also are made of calcium. Im going to ty some natural things if it works ill let u know
Votes: +0
SA
satimama
12 July 2012
I suffer from the same variety. One thing that has seemed to help..it seems too easy but it helps deter them, fresh lemons in your water. My Urologist suggest that citric acid helps break them up to pass easier and somehow helps keep them from forming. I hope this or even something else brings you relief soon :)
CR
craig79792000
17 April 2010
I dont think I would classify my stone issues as chronic, but for some reason I have had them three years in a row, always in November. I have changed my diet etc., but they keep forming. The first one made me cry like a baby, primarily because I did not know what was wrong... I thought I had a stomach virus and spent two days making myself throw up, but it did not make me feel better (obviously). I have several bottles of hydrocodones just sitting in my medicine cabinet for when they return. For me, pain management has taking care of the worst part. When I feel one starting to move, I just take the pills and drink gallons of gatorade and flush them out without going to the emergency room. I cant imagine living with them constantly like you do. I know how bad it hurts and I will pray for you to be free of them forever.
Thanks so much for the website referrals, they were a super help to me! This past month I've passed four kidney stones, so I need to find all the help I can on this, Doctors don't seem to know a whole lot about the Diet part nor did I, which I found to be very interesting and worth a try. Thanks again, God Bless
