What have you tried for stone prevention? A KidneyStoners study.

questionOne of the first questions that we often get asked by new kidney stoners is, “How can I prevent this from happening again?”

If you saw a doctor for your stone, there are a number of options that he or she may have offered you including: testing for stone risk factors, changes to your diet, or taking daily medications. Alternatively, you may have instead found out about other ways to prevent kidney stones from family, friends, or the internet.

While there are many potential options out there, it’s not well known how often kidney stone patients are actually being offered these options or whether they are making the suggested changes. To better understand this process, we are inviting kidney stone patients to participate in our latest survey, which is on the topic of kidney stone prevention.

This research survey is anonymous and contains 20 questions. It should take you less than 5 minutes to complete. We hope you will take the time to share your experiences – your input may help to develop more effective prevention options for patients in the future.

Click here to start the survey. [Link deactivated]

Update 10/10/14:

Thank you to everyone who responded to the survey. The survey is now closed. In one year, we received over 1,300 responses! We’re in the process of analyzing the results and will share them with readers on the site once they are available. 

 

About Dr. Mike Nguyen

Mike M Nguyen, MD, MPH, is a urologist and an Associate Professor of Clinical Urology at the Keck School of Medicine of USC in Los Angeles, CA. He specializes in the treatment of kidney stones with both surgery and dietary prevention and the in the treatment of kidney and prostate cancer using the latest robotic surgical approaches. He sees patients at clinics located in Los Angeles, Pasadena, and La Canada, CA. He is the founder of the www.KidneyStoners.org website.
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24 Responses to What have you tried for stone prevention? A KidneyStoners study.

  1. jane henson says:

    Have you tried D Mannose , Probiotics (Lactobacillus & Bifidus with Cranberry ) also Magnesium Citrate capsules ? All break down stones and also the probiotics put the good bacteria back in you that antibiotics kill ..I’m on all these now and only on my 2nd day (i have stones in both kidneys and constent uti’s ) and so far i feel somethings working ….I hate taking Antibiotics because they wont work while we have kidney stones so its a vicious circle…also the antibiotics give me thrush which also is hard to get rid of but i have had to be my own advocate lately and read up on what else can help disolve and prevent stones .

  2. miriam moscowicz says:

    17 year old male with cystinuria, have gone through lithotrpsy…laser uretescopy,,,the works…now I have a few 1 cm stones in my left kidney, and I started passing gravel sand…bloody urine.my stones are shrinking but in pain. cant attend school normally…any help????

    • Mary Parmentier says:

      Stonebreaker herb called chanca piedra is excellent I use whole world
      Botanicals “Royal Break-Stone”. Drinking 1-2 oz of c
      Organic pure cranberry in 8 oz of water everyday all day. Use filtered ph water.
      I also take Holy Basil vitamin c,
      And magnesium called “Calm”. These are al
      Available at Vitamin Shoppe or Sprouts type stores like Earth Fate.

  3. Carol Monnier says:

    The first stone i had was around 10 years ago. No idea what it was, suffering from extreme pain and throwing up, i went to ER. Over next few years, i passed around 4-5 by myself with dif. degrees of pain.
    Then, i started doing a 3 day ‘flush’. I am on one now actually because once again i felt a stone growing in my left kidney. I am accustomed to sense and feeling of it within me. The flush is 1 gallon water + 10 squeezed lemons + 4 slow release Vitamin C’s + 32 alfalfa + 6-8 Herb-Lax (a natural dietary supplement for occasional irregularity). All should be taken over a 12 hour period for 3 days. You do not have to take the herb lax the last 2 days but i do.
    Tomorrow will be my 3rd day on the flush. If the stone is still with me then i will continue another round till it’s gone. It has worked for me over the years. I pray it does so again this time.
    Kidney stones can be such a painful sudden attack that really scares the heck out of you. I’m grateful i’ve found what helps me thru it. I just hated the thought of the surgery (prescribed by an urologist) in that tiny area of the urethra. Ouch..
    Hope something i’ve said something to help someone.

  4. Windy says:

    My Dad has had oxalate calcium kidney stones since he was a teenager (over 60+ years). We have found thru experimentation that if he drinks half his weight in ounces (e.g 150lbs ->75oz of water) of alkaline water (8.8PH) plus one large glass of lemonade made with the alkaline water that it keeps the kidney stones at bay. He has to do this every day without fail or the kidney stones form within a week – the less of the regime he does the kidney stones come back smaller and then in full force if he doesn’t do it at all. As he has gotten older and has not drank the amount of water required – or has more medications that he has to take, we have him drink more lemonade (lemon juice’d water) – we are at 1 liter alkaline water and 1 liter alkaline water lemonade now since he doesn’t drink as much water these days. He stays away from the foods that Mayo Clinic says are bad for oxalate stones. http://www.mayoclinic.org/diseases-conditions/kidney-stones/basics/prevention/CON-20024829. Note, I’ve had to take this list to the hospital/rehab so they don’t feed him ‘good food’ like spinach – which is the worse food possible for his stones.

    We found that if he drinks more than 3 liters of the alkaline water then he has a harder time breathing – I think it makes the body too alkaline and the lungs try to compensate . http://www.nlm.nih.gov/medlineplus/ency/article/001183.htm

    He is on a diuretic but by itself it doesn’t stop the stones. Also, other than staying away from the foods on the Mayo website – he didn’t change his diet -it’s a typical American diet of restaurant food/fast food/prepackaged food.

    He’s been on this regime for four years – without fail – if he’s in the hospital/rehab for something else the stones come back – because I can’t get the Dr’s to give him the regime….and we know it works for him. I get so frustrated with the Dr.’s because he now has to have a Ureteral stent put in when he gets these stones because all the years of passing stones has his tube so scarred that it can no longer be widen with a ‘balloon’.

    Hope this help others with this terrible and painful condition.

  5. Patty says:

    Is anyone familiar with Cystinuria? I’m in the 1% group of kidney stoners. I passed a stone at 5 yrs old (1958) and 10 yrs old. Had stones surgically removed at 13yrs old & 14yrs old. Dr’s removed 75% of my kidney at 14yrs old. I ended up in surgery every four years then went about 15 yrs before surgery again. Had a 17mm blocking stone removed 8 mo’s ago and I started drinking 100 oz of water a day. Just passed a 6 mm stone today. I’m trying to go the low sodium, protein route too. The meds available are very toxic and not for long term use. My portion of any medical bills is $17,000 a year. I can’t afford to do surgery. Anyone know about Cystinuria and how I can deal with this. Finances are my main concern.

    • Patricia says:

      Hi Patty,

      I have had three so far and have a ton of empathy for you! What works for me is drinking water with lemon every morning before food. I have added organic apple cider vinegar with the mother (2 tbsp) to a cup of warm water and (1 tsp) honey. I found “Stonefree” on Amazon (2 in the morn-3 at night). Also Chadra Piedra on Amazon will break them up too. They work great! Don’t use if your pregnant because they do relax those areas so the stones can pass along with breaking them apart. We all finding out that we are our best advocate these days and getting educated is in our best interest. I will pray over the financial and physical things. God Bless

      • You are the person I’m looking for with something other than meds. I believe in oils and am going to check out the Amazon stuff. I would love to avoid ever going through this stent thing again. Too painful!
        Thanks for your ideas. Bless You!

        • Vivian says:

          Hi Roberta,

          I was diagnosed with a kidney stone in my kidney on 9/27/2015 after a trip to the urgent care center…One week later I was getting a cat scan and was then diagnosed with a 6 x 4 mm stone now moved down to my ureter…I was given 2 1/2 weeks to see if I can pass it on my own…Since this was my 3rd stone (the 1st one I passed and the 2nd ended up with emergency surgery and a stint for 3 weeks!!…HORRIBLE!!), I was determined to pass this one even though it was only a 20% chance I could pass one that size…I researched the internet and bought myself “Chanca Piedra” liquid dropper form…I used 3 droppers full with a small cup of room temp water first thing in the morning and did the same thing before bed…I also used 2 tablespoons of organic Apple Cider Vinegar to one 8 oz glass of water once or twice during the day…And that’s not it…I also squeezed several lemons (about 4) and drank that straight in the evening…And of course about 80 ozs of distilled water…On October 22nd, I had another scan to see if the stone had moved…With scans in hand I went to my urologist who had absolutely no explanation to why my 6 mm stone had disappeared!!…When I told him what I was doing at home to try to dissolve this large stone, he would not agree with me…He insisted it broke up on its own and passed…I would like to believe it was my “regimen”…I will continue to drink only distilled water and stay away from foods high in calcium oxalate…I was willing to do anything and everything to pass this stone and not have to go through the surgery and even worse the stint for 3 weeks!!…Hope this helps…Sending you positive healing energy…

    • jane henson says:

      Hi Patty
      Have you tried D Mannose , Probiotics (Lactobacillus & Bifidus with Cranberry ) also Magnesium Citrate capsules ? All break down stones and also the probiotics put the good bacteria back in you that antibiotics kill ..I’m on all these now and only on my 2nd day (i have stones in both kidneys and constent uti’s ) and so far i feel somethings working ….I hate taking Antibiotics because they wont work while we have kidney stones so its a vicious circle…also the antibiotics give me thrush which also is hard to get rid of but i have had to be my own advocate lately and read up on what else can help disolve and prevent stones .

  6. Zizi says:

    After passing one stone in my early 20’s and being informed that I had many small stones in both kidneys that were “too high up to ever pass in this lifetime” I started having problems with stones again about 5 years ago, in my early 40’s. I now suspect that the countless painful UTI’s I experienced over the years were probably related to passing small stones. Last fall, in the scope of less than 4 weeks, I had lithotripsy, urethroscopy, two stents, fungal infection, e-coli infection, and sepsis. For me, the stents and the sepsis represented the final straws. While it’s way too soon to determine if what I’m doing is working, here’s how I’ve attacked the problem:

    First, I realized that, when I don’t drink enough water, my entire urinary tract hurts. So I drink A LOT of DISTILLED water – at least 10-12 glasses a day. When I do any less, I have a lot of bladder/urinary discomfort. Chugging water all day means I am in the bathroom about half the time, but it seems to help. This was recommended by the urologist who first started treating me during this recent bout.

    Second, I quit drinking alcohol. I know science tells us stones aren’t impacted, but after I got sick, the thought of having alcohol in my urine was more than I could stand. Because I was, let’s say, an “over 14 drinks per week” type of drinker this probably needed to happen anyway. A happy side effect of that was a 10 lb. weight loss in the first 3 weeks. I haven’t touched a drop since.

    Next, the new urologist suggested that, because I’m allergic to meds that could help prevent stones, my best choice was to work on diet. He suggested low sodium and to include drinks with lemon or lime. I started researching oxalates, as that is my type of stone, and have adopted a low oxalate diet as well. I’m careful to include a reasonable amount of calcium, and I make sure I consume that calcium with other foods so it absorbs properly. I’m limiting my protein to about 30-40 mg a day. The low sodium has helped me lose another 13 pounds. Watching sodium and oxalates gave me disturbing insight into just how much chocolate and high-sodium foods I had been eating – it’s been an eye-opener. I realize my stones are largely the result of unfortunate genetics, but I think the way I ate (and never drinking enough water), wasn’t helping me, either.

    I go back to the dr. for tests next month. I’m anxious to see if any of what I’m doing helps!

    • Feb says:

      This is great! To think that while new technology in medicine is improving our lives it also comes with more pain. There must be another way to remove stones as the current method could seriously traumatise patients or shock then enough to change their habits. Whichever one it is, you’re better off choosing prevention over having experience pain worse than childbirth. It’s quite barbaric to say the least.

      • Bridget says:

        I have never been much of a water drinker, but you can believe I am now!!! I hope I can stay with the water/lemon juice/diet regime. I’m not good at making new habits but this experience has bee a wake-up call for me as well.

        Good luck to you.

    • Chris says:

      Hi, Be sure to ck with your Dr. About the distilled water. Regular water has beneficial minerals that you need. I tried distilled water for a year at about 80%
      and had problems. A mix is probably the best. Lemon and Lime are your friends,but don’t buy processed lemonade at the market the sugar content is not good for your condition. Throw out all your small water glasses and buy the largest glass you can find,your consumption will increase greatly. The most important thing of all that I have found is to drink water late at night once or more. In my opinion stones are not formed so much during the day when we are active and drinking fluids but a night when we sleep and don’t consume fluids. We are not flushing the system, and all that bad food we ate during the day breaks down and travels through our system. Minerals concentrate in the kidneys and bond together,especially for us MSK people. I have had severe MSK for over 45 years and following the diet plan (hardly any safe food left to eat!) and the above has more or less kept me going. I was shocked to read about so many young people with my same problem, my heart goes out to all of you.
      Hope this will help you
      Chris

  7. Dan says:

    I’ve suffered from kidney stones for at least a dozen years. Have had around a dozen removal surgeries, and passed hundreds (perhaps a thousand) stones.

    Been through a couple of “classes” on diet for stone prevention, and all they really tell you is “don’t eat anything healthy”.

    So 3 years ago next month, when the pain of peeing ground glass all the time got unbearable, I decided I needed to figure out something on my own. After a couple of false starts I tried D-Mannose (in addition to the calcium citrate I’d taken for years), and within hours the ground glass feeling was gone (though after about 4 days there was one whopper of an “incident” that lasted 24 hours or so).

    I would have been happy for just that, but it became apparent after a few months that stones were actually being dissolved (something that supposedly doesn’t happen). (NB: These are calcium oxalate stones.)

    Anyway, where previously I had hundreds of stones showing up on a CT, a check last month showed 12 small ones (and I think several have since passed). Two large stones in my right kidney (that the docs said were too large to ever pass) had disappeared.

    Yes, there were some rough spots — I had a stone get infected about 2.5 years ago and was very ill, plus some unpleasant periods as the other stones passed through (feeling not like stones, though, but what I called “mush”).

    Anyway, that’s my story. D-mannose 3x500mg capsules twice a day, plus the standard calcium citrate twice a day, three years, some unpleasant times, essentially stone free. Oh, and the D-mannose appears to cause some flatulence, partially controlled by Beano.

  8. Cassie says:

    I am 15 weeks pregnant and just wanted to put my story out there. No doctor I’ve had has believed me, so obviously I have no answers. I have chronic kidney stones, normally and my left kidney is deformed due to surgery and always has at least a few stones in it all the time. I pass about 15 stones per year and need surgery to remove the larger ones about every 2 years. Anyway, I have had two successful pregnancies and and I am on my third right now. Every time I am pregnant, my stones dissolve to the point of becoming sand. So instead of passing stones, I am peeing sand, which you’d think wouldn’t be painful, but it is just as painful as passing small 1-2mm stones(which is relative, because I’m used to it). I have had kidney pain for the last two weeks and I have noticed “exit” pain at least 7 times in the last month, without noticing a stone coming out, but now I’ve had a closer look and I am seeing sand again. Anyway, my real question is: are there changes in acidity/alkalinity, citrate levels, what is it that changes during pregnancy that is dissolving my kidney full of stones? If I had an idea, maybe I could make a change post-pregnancy to keep the stones at bay or at least keep them from getting to 7mm and having to pass them or go to the hospital. If anyone can even refer me to someone who has more information, it would be greatly appreciated. Thank you for your time!

    • Dan says:

      As you can see from my post, there are chemical changes that can occur and cause the composition of stones to change. About 5 years ago I was placed on oral Lamisil anti-fungal due to a skin fungus, and for several months my stone symptoms improved. My suspicion is that a fungus in the gut consumes D-mannose in your food and that results in more severe stone symptoms. And there are likely a half-dozen other chemical reactions that could be involved here. Pregnancy causes massive changes in immunity and hormones and a change in stone composition is not surprising.

  9. chris batten says:

    I agree – arrogant jerks. They want you in and out as quick as possible for the money. They dont want to tell you anything because they actually dont know themselves. Any mention of a home cure has them rolling their eyes. Do not trust Dr’s they are only mislead humans like the rest of us. I passed a 7mm stone on codeine and panadol because the Dr. didnt believe I had a stone , after I passed it I got as much morphine as I wanted – the Dr. was off duty then or didnt want to see me.

    I like the saying in one of the blogs here by a mother ” giving birth was bliss compared to passing her stones ” – I know it and will be quoting that thank you.

  10. Tammi says:

    Tom, I believe you! My sister has passed literally 100’s of stones some big, some small. I have had numerous ones too but not nearly at the rate and size of hers. She has a collection from one summer and there are 48 stones in the bag. That is only a small portion of the ones she has passed. I am struggling right now with a 5mm and a 6mm in my left kidney, just four weeks after I had a 4 and a 6 busted with litho. I am having litho again on Friday for these two. My urologist gives me mixed messages all the time about the stones.
    The night I had litho in January which was preventive because I was bleeding heavily from the stones, I had a stone go into the ureter. They were supposed to be all broken up but alas, one came out big enough to send me to the ER begging for help. They did a CT and said it was 8mm and it was in the ureter just outside the kidney. The only thing that could be done since I was on the heels of litho not even 24 hours prior, was to place a stent, which they did. It was done by an on call urologist, not mine. When I went for the follow up on Monday, my dr said the urologist on call had misdiagnosed it and it was really only a 3.8 and it was just a fragment from the litho. He took the stent out a week later. I kept having discomfort but no bleeding. He did an ultrasound and found a 5mm and 6mm in the left side again! I also have a 4mm in the right but it doesnt cause me much pain right now. He scheduled another litho. They did test my stones and they are calcium oxylate monohydrate.. the hardest kind and they are hard to break up with litho. What on earth an I do about these stones continually forming? UGHHH. My question now is to stent or not to stent. Any one have any ideas on that? I didnt stint the last time and it led to trouble but they are so damn uncomfortable, I dont want to deal with it if I dont have to.

    • chris batten says:

      I think we need to change our diet lifestyles. I went virtually vegan vegetarian and had a wonderful summer , I thought I was over it all. I didnt care if I got dehydrated and I didnt get any stones …. until I either got a bug or food allergy that gave me water-runs and sent me to hospital with a 3mm Stone passing and 2 x 6mm’s waiting in each wing. Hitting on copious quantities of VOOLJ ( virgin olive oil lemon juice ) is helping keep the pain away which is incredible, incredibly good , but I am still waiting. Until about 20yrs ago no one had heard of oj or lj ( has to be natural ) as a cure , I certainly tried to change all that and now the blessing has returned to me with olive oil being added – thank God for VOOLJ.

      I recommend a vegan vegetarian lifestyle with all natural foods , and not a vegan junk food lifestyle.

      I recommend once you are on this lifestyle , find out what you are allergic to – I am allergic to gluten ( protein ) , many food additives like guar gum 412 , black olive color additive ( forget the number ) , and now after this episode I think also cacao ( chocolate ) , to name a few.

      Not only will the K.Stones issue be resolved by a New Individual Lifestyle Eating , NILE , but I believe most if not all our health isuues – cancer , heart disease , diabetes , arthritis etc. will be resolved.

      Olive Oil is also wonderful for candida type skin rashes which used to plague me . Just a few drops can provide instant relief. By the way I still occasionally but rarely eat meat.

      • loisann says:

        Chris,
        How do you take olive oil and lemon juice? Drink it? How do you stand it? I am willing to try. I never want another stent or percutaneous nephrolithotripsy. The urologist misled me by implying that if I had the per. neph. I would go home a new woman, but instead I still went home with a stent. They are never in a hurry to remove a stent, while we sit home unable to wear real clothes or walk anywhere for very long.

      • kevin says:

        Depends on the type of stone. Uric acid stones are dissolvable by altering the urinary pH to more alkaline (relative to a more acid urine). This is accomplished through dietary changes such as increased alkali in diet (ie plant based diet) and low purine diet. However, 80-85% of stones are not uric acid but are calcium based stones (oxalate, phosphate). Once these stones form, they do not dissolve. There is no magic pill to take to ‘break’ them down. Goal is to help prevent them from getting bigger or from new ones from forming.
        Stone disease is in large part a disease of concentration, meaning that you need to keep your urine dilute (should be pale yellow to clear). Goal urine output is 2 to 2.5 liters per day, which means you need to drink 2.5 to 3 liters or more per day depending on your activity level (sweating, etc).
        Recommend low oxalate diet, lower sodium diet (excess sodium in diet will pull calcium into the urine as the kidneys get ride of it, increasing stone risk), reduced meat (in particular red meat) consumption, and increased dietary citrate – this is in the form of eg, fresh lemon juice in your water. These diets can be found through various web searches. Watch out for the ‘miracle’ pills – many contain unproven substances and some herbal preparations may actually put your kidneys at risk.
        Increasing citrate in the urine (through eg lemon) is important as studies have found urinary citrate to be a natural inhibitor to stone formation.
        If you are young and have stronger family history, and/or if you are a recurrent stone former, is helpful to have a urine stone risk assessment to look for these modifiable factors (your urine output / content is in large part a reflection of your dietary intake).
        Hope this helps.

    • Janet says:

      7 years ago, I needed litho after a severe infection formed from a stone blockage in the ureter. After being admitted to hospital for theraputic IV antibiotics, stent inserted, Dr pushed stone safely back up into kidney and stent kept it there until it could be blasted. I wanted the stent out but Dr suggested otherwise. Now I am so glad I followed his lead because the litho broke up stone into pieces small enough to pass but still big enough to cause pain when exiting bladder and urethra. That pain we get is not just kidney pain, it is coming from Ureter as well. Thats why you can follow the path of the stone from back to front and down when passing them. I was admitted again last week via ER and because of the blockage from a new stone (1.7×1.6 CMs) was given a nephrostomy (while awake!!) and the plan now is another litho. I hoped the Dr would stent me but at this point he is worried about the infection. If given the option to stent, I would def advise you to accept it and deal with the discomfort for a couple of weeks.

  11. Tom says:

    In reading these comments I feel bad for all those suffering, and hopefully give you some comfort in knowing it could be much worse. I have passed hundreds (If not thousands) of stones throughout my adult life. Surgery really is not practical. I know this will have skeptics throwing the B.S. flag, but not only do I pass stones frequently, I pass multiple stones frequently… LARGE stones. Granted, some are relatively small (3-6mm) I have a collections of my “greatest hits”… these range in size from 10 to about 19mm… again, these are stones I have PASSED, as God is my witness.If I knew how, I would upload the picture. I have also learned that the Urologists in my city are arrogant jerks. When they can’t explain this they somehow decide it is me. That I am just after pain meds. I have had doctors accuse me of getting gravel out of the back yard .. until they saw the CT scan. I even had one tell me stones don’t move. It is at this point that I have realized that in any profession, there is someone at the bottom of the class. So I guess the lesson here is hang in there… it could be worse.

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