[not again]

The list I have from my uro of foods to avoid is from 2002. It says to avoid wheat germ, so that means no 100% whole wheat bread???? Is this right? I have calcium oxalate stones. Trying to be better w/ diet and 10 glasses of water a day. Diet sucks though, would like to lose 30 lbs. Have been better w/ peanut butter avoidance (oh how I miss thee)
An another thing was on hydrochlorothiazide for a year, got a big ol' stone stuck in my ureter w/ a nasty kidney infection. Not on that anymore, have been on potassium citrate since Christmas, now I'm on allopurinol too. Now my uro is asking me if I eat a lot of protein. Have had four 24 hr urine tests in the past year and a half. Now uro said if I another test come back that's high in phosphorous I'll have to see a nephrolosist.
Guess i'm just venting, would like to lose some weight (again) but find it hard to do w/o whole grains,nuts, a moderate amount of protein and all the fruits and vegs I'm supposed to avoid.
Any thoughts?

[lioness]

My stones are now calcium phosphate. I have been trying to do my own diet, low phosphorous..My 24h is in July...taking thiazides and potassium (K-Tabs) daily. My appetite has been suppressed lately due to not feeling well and I can feel these stupid stones puching my kidney something that goes unheeded with urology.

Originally they were "infectious stones"taken out in the flank bilaterally 3 years ago. Hydration is my problem. My stones were related to infection so hydration is a key in my course of treatment and I still get infections every time they drop down into the kidney. I have been on propylaxis low dose antibiotics for 3 mos now and when I am taken off the antibiotics I keep getting infections. Its hard to drink gallons of water everyday and spend most of your time in the bathroon.

I also just saw chief of uro yesterday who said that my weight doesnt help my stone problem...well duh...I had already read that...he also thinks my flank pain is back pain due to weight...which I also think is ridiculous.

Good luck to you. At least your stones move. Mine are glued to the upper or lower poles of the kidney. There is never a change when I get a CT KUB or x-ray.

I do know the difference between flank pain and back pain...not too thrilled with his medical advice or opinion.

[not again]

Thank you for replying.
I'm pretty lax when it comes to staying hydrated, trying to be better. Going to the bathroom every 20-30 mins is a huge pain. I've only had 4 stones, one laser lithotripsy, one lithotripsy, in the past 18 months. I have never passed any on my own they are too big. I've had two get stuck in my ureter, evil flank pain vomiting, kidney infections, hence the procedures. Right now I have one in each kidney,8mm and 9mm, both in lower poles. Lost my job in January, severance package allowed me to keep insurance at the rate I was already paying for 26 wks. I paid my out of pocket max for the year, told my doctor I want them out. Having utereroscopy/ laser at the end of this month with stents. Can't wait to drink ten glasses of water a day with stents. Just hope it works or I will have to do that PNL which sounds awful.
I have back pain too on both sides. It comes and goes, a dull ache. Nothing like that "let's go to the emergency room" flank pain though. Anyway I just hope they won't keep recurring if I change my diet and more importantly keep up with fluid intake. I'm really getting sick of eating peas. What about potatoes??? All the lists of high oxalate foods I've seen online are different. Is it all abunch of BS???

[lioness]

I have had multiple stones...

The further they have gotten is the renal pelvis all over the place...surprised my former treating uro and his assistant. I saw the x-ray in my first ESWL. I cringed when I saw it...I will probably be looking at #7 shortly. I finally found a uro at my local HMO who hasnt ruled out urological for my flank pain. He's not thrilled about my lack of desire for fluids...but I cant force the issue...I cant spend most of my time in the bathroom at work...and I like my water really really cold...I take Vicodin for the flank pain and Percocet at times to help me sleep. At times I cant sleep on my sides just like when I was diagnosed with these stupid things...

My last two treatments my stone was basketed and it is still infectious related although at the last treatment there is now oaxalate in the mix...but still hydroxylapatite, and the MAP stones. I have an infectious disease doctor treating my recurrent UTI's and ordering urine tests now once a month. She pushes urology to clear the stones when they drop down into the kidney b/c she thinks they are causing the infection...something that urology doesnt agree with...which is another annoying thing...

I dont want the PCNL again don't have to worry if they keep doing CT KUB's every 6 mos like I ask them to do.

[not again]

>>>Lioness<<<
Sounds like you've had it rough. I am a bit confused. What do you mean by infectious stones? The stones themselves are an infection or the stones cause infection? Hydroxylapatite? MAP? Dunno what those terms mean, still a rookie i guess. Sorry to hear about recurrent UTIs, they are maddening.
If you don't mind me asking, how old are you? I am a 37 year old female.

[lioness]

I am 41 years old.

Sorry to get so uro techno on you...but I am pretty well read about my case. Bought books, etc., and I've had to be. Uros dont talk much and you feel rushed.

Infectious stones are called "struvite" stones. They are big (about the size of quarters or golf balls) called "staghorn calculi". They have horns like a "stag" hence their name. They usually branch out to the collecting ducts of the kidney. They are like lava and grow fast...They are mainly found in women who have recurring UTI's with the bacteria called "Proteus" NOT E Coli. I'm not a doctor but E Coli does not cause the struvite stone material. I went 9 mos untreated for the "Proteus" bacteria on resistent antibiotics, then I was referred to this uro who specialized in taking out stones in the flank. They are made up of hydroxylapatite, magnesium, ammonium & phosphate. They are called the "triple phosphate" stones. Now all of a sudden oaxalate is in the mix as well at the last stone basketing treatment. I have bought the Kidney Stones Handbook and feel like bringing it into my appt's and highlighting chapters...My UTI's are maddening and urology seems to be blindsided by them. I have an infectious disease doctor who is more upset with urology than I am.She san only do urine tests she cant find out why I have UTI's. That's not her job. The problem is that the HMO I go to is a high volume surgery center (medical mill). They have too many patients...and no bedside manner...I have been traveling into L.A. for three years then my original surgeon left whom was good and my last two treatments were nudged by my infectious disease doctor...I am supposedly stone free in the collecting system according to my last OR report. They can't treat stones in the tissue...

I learned through all of this that most uros are trained surgeons first (you only see them in their scrubs)and leave the metabolic workup to their assistants who are supposed to handle the stone patient in stone prevention. I was placed on low dose antibiotics without any f/u urine tests to make sure I didnt get that "Proteus" bacteria that causes the big infectious stones...

[not again]

I don't deal w/ the assistant anymore. When I had my first stone I had it lasered, did a24 hr urine collection. I was put on "maintanence" w/ the assistant at he office. She put me on a low oxalate diet, prescribed hydrochlorothiazide. I was told to get an xray and see her in a few months. Xray showed a small stone, she acted as if was no big deal wrote me another script and told me to call the office if I had any symptoms. Six months later ended up in th ER w/ flank pain. I was having symptoms that week which I was ignoring, strong smelling urine and blood. My small stone turned into a 1cm stone stuck in my ureter. I had a UTI and a kidney full of pus. I was so sick.
Ever since last August when this happened I've been dealing w/ a different uro. I've had several office visits w/ him and he is performing my surgery at the end of the month. I guess I should consider myself lucky after hearing your story. I'm really hoping that this will be the end of the line w/ my stones. I'm going to have to get off my insurance (which is fantastic) and get onto my husbands in a couple of months which worries me. Off to drink more fluids now, only 8 more glasses to go.....

[lioness]

I hear you...I had to deal with the one year residents who left every July(I have had 4 metabolic uros on my case in 3 yrs)...not fun...being that it was a high volume metabolic stone clinic didnt help either...and you never got to see the treating urologist or discuss other treatment options...my stones will never ever pass so ESWL isnt the treatment for me, IMO...the last two treatments have been URS w/basketing of the stones...& my UTI dr has to nudge them each time they drop down into the kidney...Now the last two days there are calcifications in my urine, something I havent seen in months! My first ESWL got me disinterested in fluids...since I didnt want any more uro intervention...doesnt pass the stones or flush the bacteria out, so why bother...

Pretty sad when the admitting clerk & anesthesiologist know you at the hospital...

I sip water, key word "sip" at work all day.

This past July I actually got to see the new treating uro...not referred to his assistant...however, he didnt agree that the stones were causing the infection and yet again the flank pain...so I floundered back to my regular doctor who said to go back to urology...

I wouldnt wish this misery on my worst enemy.

I finally bought the Kidney Stones Handbook...very informative...felt like bringing the book to my doctor visits, highlighting chapters & such...

Being that we are female patients in a man's predominant medical field...but needless to say I have read posts on here that men get the same treatment...

I have better luck in urgent care than ER...

I don't think the almighty KUB x-ray shows if stones are forming...they show big calcium stones...I have had to nudge my uro to take a CT KUB.

I did take my case to my dad's uro from the beginning and he was disgusted at the "doctor in a box" factor esp on a stone patient with 100% infectious stones and no f/u urine tests to make sure the urine was sterile.

I will be dealing with uros the rest of my life, it seems, I didnt plan for this to happen to me, however, I don't have much of a choice.

I hope your sx goes well...sounds like you have that "doctor in a box" syndrome, too. Not fun for the stone patient...

[POSS]

I am a 34 yr old female. I have multiple calcium oxalate stones in both kidneys. I am horrible and don't take my medicine like I'm suppose to and mostly ignore the diet thing. I know I am going to regret it one day.
I have horrible swelling in my feet and legs at least up to my knee. Does anyone else have this?

Did hydrochlorothiazide cause another stone, or cause it to be larger than normal? I want to take it for the fluid retention in my legs, but not if it is bad for my stones. Help!

[lioness]

I understand your plight. I also didnt take my stone pills for while, too much family drauma and had to tell my uro about that...he wasnt too thrilled...most stones that are analyzed are calcium oaxalate and calcium phosphate (which is what I have) & diet & hydration are the key in stone management.

What kind of medicine are you taking for your high oaxalate content?

My problem is NOT drinking gallons/buckets of water every day, since my stones were 100% infectious. I have been on low dose antiobiotics for 3 mos now, and take urine tests once a month. A 24h is scheduled in July to see if I still need to take the hydrochlorithiazides and Potassium citrate.

The thiazides are used in stone management to lower your urinary calcium then it lowers your potassium which is part of your electrolytes so I have to take the potassium citrate (6 pills a day) to keep my electrolytes from going out of balance. Females do have lower urinary volume. Having a high output of urine is important, also! Something I read in a book not from any uro. Go figure. You can ask your uro to give you a water pill (Lasix), I am not a doctor, but they make your kidneys work harder and make your urine more concentrated which is not good for the stone former.

I woud encourage you to take your pills and stay hydrated. Otherwise you will be a regular stone patient annually at the hospital like I seem to be...My stones will never pass, confirmed by my last treating uro, so I get the joy of working with uros the rest of my life, it seems.

Good