TAKE CHARGE OF YOUR KIDNEY STONE PREVENTION

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I thought it was time to sum things up, to offer an utterly practical guide to stone prevention. So here it is.

You have kidney stones, even one, what next?

There are things you need to have your physicians do for you.

There are things you need to do for yourself.

Then, there are things that may not need physicians but other kinds of support.

To unclutter the text I listed the key links at the end of the article. 

WHAT YOUR PHYSICIANS NEED TO DO

Stones can come from systemic diseases, and only a physician can determine if that is the case for you. A not uncommon example is primary hyperparathyroidism that is curable but with surgery. There is a long list and it is on this site.

The search for systemic disease is beyond what any patient can expect to do without medical help. However, it is up to you to be sure your physician does this for you. It requires blood and 24 hour urine testing in combination. The blood should be fasting.

Only your physicians can send your stones for analysis.  But it is up to you to gather any stones you pass at home and bring them to your physician so they can be sent out and analyzed. Stones from the hospital may or may not be sent out; your doctor can assure they are sent. You need to make sure that is being done.

Presently, your doctor needs to order your 24 hour urine testing. We have recommended at least two 24 hour collections for medical reasons.

Because they have spent decades in school, and have special training after graduation, your physicians can understand the chemistry and biology of kidney stone formation more completely than you can. They are the ones to explain to you what is abnormal in your urine that is causing your stones. Those abnormalities are what you will treat with fluids, diet, and, when needed, medications. Without urine collections, you will never know why you are forming stones.

You should leave your physician’s office with a clear idea of what is wrong and what you are to do.

It is up to you to do it.

Eating a low oxalate diet can be overwhelming and difficult to incorporate into your daily life. I just released a course called The Kidney Stone Prevention Course to help you understand how to implement your physician’s prescribed treatment plans.

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WHAT YOU NEED TO DO TO GET A TREATMENT PLAN

Know how to use your physicians

When a kidney stone attack is over don’t just forget about it, don’t leave matters to chance. If it is a first stone that means you need to get treatment. If it is a recurrence of more stones, that means treatment needs to be better. It is your responsibility to follow up with your physicians, get proper testing, a diagnosis, and a treatment plan.

As we have said proper testing is stone analysis, blood testing, and 24 hour urine testing. Your physicians may order this before your visit or afterwards.

Of course your physician needs all of your old records and any scans you have had for stones; we have detailed how to do this in another article linked at the end.

You are the keeper of your care. When your physician is done be sure you have in hand all the things I just spoke about: Results of proper lab testing, your diagnosis, your treatment plan, and arrangements for follow up testing to be sure the lifestyle and diet changes you make reduce your risk of more stones.

You might wonder which physician I am talking about.

It is first of all your primary care physician. Even if your urologist plans your kidney stone testing and treatment, your PCP needs to know and approve because he or she has the broadest knowledge of your overall medical condition. 

Be sure to do your testing correctly.

Don’t try to be an A student. The whole purpose of the 24 hour urine collections is to find out why you make stones. Your treatment will be based on the results. kidney-stone-cartoonYou ate a certain way when you were making stones, don’t change your way during the collection. Your physician wants to see what caused your stones. If you change your diet during the test, your test results will not be helpful. Why waste your time, money, and energy to do a test that will not help you figure out why you are making stones.

Have your physician tell you what your results mean and what you need to do.  Ask for your own personal copy at the time of your appointment.

At the end of the visit review things to be sure you understand what is wrong and what you need to do to correct it.

HOW TO PUT YOUR TREATMENT PLAN INTO ACTION

Diet

We now know that the ideal kidney stone prevention diet is almost identical to the ideal diet that everyone in this country is supposed to eat. We have put a link to this diet at the end of this article.

The main parts of the diet related to stones are: Calcium intake between 1,000 to 1,200 mg; sodium intake below 2,300 mg and ideally 1,500 mg; protein intake between 0.8 to 1 gm/kg body weight; a great reduction in refined sugar intake to below 10% of your daily carbohydrate intake. The US diet recommendations include numerous charts and pictures to help you obtain all this from normal food. There is a special issue of high oxalate foods for stone formers, but the high calcium intake may reduce the importance of dietary oxalate restriction. Of course the high fluid needs of stone formers are special and not part of what every American needs to do.

It is both good and bad that the diet for all healthy Americans happens also to be ideal for correcting the main disorders that cause stones.

It is good because stone formers can eat the ideal healthy diet and prevent more stones.

It is bad because of a possible misunderstanding.

Everyone in general should use the FDA recommended diet, but stone formers specifically benefit from the diet as a focused treatment for genetic hypercalciuria, and high urine oxalate. We have told you in other articles how it came about that one diet can accomplish two such very different purposes (Links to them are at the end).

The main point is this: The FDA recommended diet provides stone prevention treatment for most patients and needs to be followed like any other treatment a physician might order.

It may improve your overall health. It probably will.

You may well lose extra weight.

But that is not why we bring it here.

It is here as a specific treatment to prevent stones.

The truth about really doing the diet

Because it is a stone prevention treatment, there is greater time urgency than in general. A healthy diet can be a wonderful life option for people in general, but they need not be in any hurry to adopt it. For someone who forms stones it is a treatment, not an option, and time matters.

In other words, if your physician prescribes you to take a medication, you don’t start it slowly. You get it and take it. When your physician prescribes a lifestyle change, it is to be done in the same way. Your treatment plan, whether it be a pill or a diet change, is a serious matter. 

How will you do it all

kidneystone-cartoon-2We have not mentioned fluids, yet, because they are so obvious a part of all stone prevention. The high fluids for stone prevention are not suitable for healthy Americans – they are too high. People in general do not need over 2 liters of urine daily.

So the problem of diet management is compounded by the separate and large problem of getting in all the fluids, some of which are nutrients – like milk and juices.

Because most people do not yet follow this diet,or drink as much fluids as needed for stone prevention, and because we do not want to spend years getting treatment started, we have to consider the sheer practical difficulties.

Some people will simply look up the new guidelines and use the excellent materials that the FDA offers. For them, that will be enough. They will figure out how to get the diet and all the fluids they need.

At the other extreme some people will require direct and continuous supervision by their physicians.

In the middle are perhaps large numbers of people who can achieve the diet and fluids together but need more than the diet guidelines alone. Here is where some innovation is called for as there are millions of otherwise healthy stone formers and our goal is always toward large scale prevention.

For those in the middle

You might say isn’t this the whole point of the website?

We would say it is, and the site offers a lot of resources to help understand why the stone prevention diet is what it is, and how to accomplish it.

Yet we do not think, and never thought, that a site alone can solve the problem of guiding large numbers of patients to a proper diet treatment.

It seems to us we need what we might call a middle ground, perhaps of professional help.

Just because I have myself done so much diet and fluid counseling of stone patients, I am hopeful that nutritionists and nurses will increasingly become acquainted with the special needs of otherwise healthy kidney stone formers and provide care for those who need it. 

Possibly, private social media groups will also be useful. These might be best with some mediation from one or more expert professionals to answer questions as needed. I am trying one out right now. It is free, if you would like to join.

With the right support managing your new treatment plan is very doable.  And if you manage your treatment plan, you will greatly reduce the risk of forming new kidney stones.  

Although I have a long experience in this kind of work I advise that patients should ask about who you might be able to get help and support from in your area, or who might be available by phone. There may well be people available if you need help. Your physician is the proper source of such people.

Medications

This is what your physician attends to. But you can know this: It is ideal, when reasonable clinically, to establish a proper diet and fluid program first, and then add medications as needed to bring  your urine chemistries more in line. The low diet sodium will reduce urine calcium and also be additive to the calcium retaining effects of diuretic drugs or potassium citrate. What I mean by reasonable clinically is that your physician needs to consider the seriousness of your stones and the risks of waiting for fluids and diet management to be put into place. It may take some time for you to change your life style and diet.

HOW DO YOU KNOW IF YOUR TREATMENT IS WORKING?

Diet

You changed your diet, but did you achieve the urine changes the diet was meant to produce? You drink more, but is it enough to lower actual stone risk?

The only way to know is to do another 24 hour urine collection and find out. I repeat, the only way to know is to do another 24 hour urine collection and find out. I have worked with many clients that did the initial 24 hour urine collection, went to the doctor to get a treatment plan in place, did an excellent job of incorporating the new changes, but never completed the 24 hour follow up. You will not know if your treatment plan is working unless you do the follow up. I know it is a pain, but as I always say, way better than the kidney stone pain you may have if you don’t!

Medications

These will generally be added when diet and fluids have not achieved a sufficient amount of beneficial change in urine chemistries. Just like diet and fluids, effects of medications need to be monitored by repeat testing, which should be reasonably prompt after medication is started. It is up to  your physician to use these results to adjust your medications, and up to you to maintain fluids and diet.

When do you do follow up testing?

Diet and fluids will have their effects right away but you should not test right away. New habits are hard to maintain, so you should wait awhile and be sure that the changes you made are more or less consistent and will remain in place long term. Medications will generally have their effects by a few weeks.

As a rule, about 6 weeks is enough for many people to have changed fluid and food habits and for medications to have become fully effective. But if you are not ready with respect to fluids and diet, don’t test. By three months you should be ready and retest. Too much time leaves you open to new stones. You don’t want that.

How do you get the follow up ordered?

Your physician orders your testing but you are the one who needs to say when concerning diet and fluids. Most of the time your physicians will not call you because they will not know when you are ready. You need to call them. Be proactive. Also, be sure and ask for a copy of your results so you will have them.

The results are in, now what?

54d6efb2197256883d5e3d3d99881532The same as at the beginning. You need to make an appointment and be sure your new test results are available for your physician to review with you. You should expect your physician to tell you if the original problems you have been treating with diet and fluids and perhaps medications are still there, better, or fully corrected.

If still there, treatment needs to be adjusted, often via more diet or fluid or medication change. If better, the same.

It may not always be practical for physicians to monitor fluid and diet treatment. This is another role that can be played by nurses and nutritionists. To do this they will need to understand how to read the kidney stone urine reports and make changes to lower stone risk. Your physician may be able to arrange for this kind of help.

WHAT DO YOU DO IF YOUR TREATMENT IS WORKING?

If your original abnormalities are corrected, congratulations, but you are not done. You should get tested at least once a year for some years after the last stone. Each one year cycle is just like the one at 3 months.

If new stones develop despite treatment, you need to be re-evaluated and you need more treatment. Recurrence need not occur because stones are made of crystals and crystals can be prevented.

The whole point to this article is to make sure you are taking care of you. We tell you everything we know- the how, the why, and the when, so you can arm yourself with the tools you need to stop forming stones. If you are a typical stone former, and most of you are, kidney stones can be prevented. It is up to you (along with your physician and treatment support professional if you have one) to make sure everything discussed in this article happens!

Eating a low oxalate diet can be overwhelming and difficult to incorporate into your daily life. I just released a course called The Kidney Stone Prevention Course to help you understand how to implement your physician’s prescribed treatment plans.

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AS PROMISED, HERE ARE THE LINKS:

What is the kidney stone diet

How to eat the kidney stone diet

How to be a successful kidney stone patient

Five steps to stone prevention

Putting it all together

How to collect 24 hour urines

How to read your lab report

5 Responses to “TAKE CHARGE OF YOUR KIDNEY STONE PREVENTION”

  1. Karen Munger

    The Lucerne brand found at Safeway stores on the west coast (the chain goes by a different name in different areas) has a no salt added cottage cheese.

    Reply
  2. jill

    Hi John,

    There is no such thing as NO salt cottage cheese. Just lower salt versions. Read your labels. Every grocery store should offer a lower salt version.

    Tell us what you find out
    _
    Jill

    Reply
  3. John Trimble

    I’ve shopped several grocery stores in the Colorado Springs area searching for a food product that you highly recommend: no-salt cottage cheese. Who makes it, and can I buy it locally here? Also, do you have any idea why it’s so hard to find?

    Reply
    • Fredric Coe, MD

      Hi John, The cottage cheese is Friendship brand, and my wife brought some home here in Chicago. Maybe the company is small? Regards, Fred Coe

      Reply

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