kidney stones are plagueing me

First of all, I want to let you know I understand your frustration and am sorry that you are going through this. The pain felt from kidney stones is one that is by far one of worst pains....and the exhaustion/achiness that can come from them is certainly disheartening. Thats only made worse when you're in pain and the doctors cannot seem to find the cause of it. AND when you have such an exciting upcoming event that you want to feel well for! I do have some questions for you and perhaps some suggestions for you because your story sounds a lot like mine. First have they ever mentioned you had a kidney infection? That can certainly cause pain and usually if you have stones (and multiple ones at that) it is highly likely at some point or another you will develop an infection from the foreign body in your system. If not, a 1.5 mm stone should be able to be passed (usually they begin to worry about 4+ mm stones getting stuck in the ureter and obstructing) and although certainly uncomfortable the good news is that at some point your pain should go away! My next question would be have you ever had blood in your urine, particularily at the time that you were in your worse pain? Usually those who have kidney stones have a microscopic amount of blood in the urine, but once the stones begin to pass or obstruct (which can actually happen at the base of the kidney/beginning of the ureter depending on your paticular renal anatomy) you begin to see visible blood in the urine. These are important findings to mention to your doctor. Have they ever said your stones were in your ureter or have they said that they are still in your kidney? (And the good ole "They shouldnt be causing your pain" nightmare) If so, I know first hand how that feels. Here is my story...


I am a 23 year old female with calcium oxalate stones known as Randalls Plaque Disease. This means my stones are not free floating but rather adheared to the kidney wall under a thick mucosa, so are unable to be removed at this time or broken up with a lithotripsy. How did I find this out? Thats where my long and painful journey comes in. I was first diagnosed with kidney stones just as you were. I first had urinary symptoms such as blood in my urine and feeling like I had to pee but couldnt, Nov 2010. I went to the dr and he told me I had a kidney infection. A few days later and on Cipro I began having an awful pain in my right side so I rushed to the ER. Ct scan showed I had 3 kidney stones (ranging from 2-4.5 mm) on the right and 2 kidney stones (a small 1 mm ea) on the left but they were still in my kidney and "shouldn't be causing my pain". So what was? I was heavily drugged up and sent on my way to a Urologist. He decided that I needed a ESWL (lithoripsy) to break up the 4.5 mm stone on my right side. So I was transferred to the closest hospital who had the lithotripsy machine.

In December 2010 he preformed a right side lithotripsy to break up the 4.5 mm stone. I was told after a plain xray I was stone free and was sent on my way. Jan comes around and I was still in pain, found out I had another kidney infection and was given Cipro.

April then comes and I am in excruciating pain. I go back to the original army doctor who wanted the ESWL preformed and he sent me for a CT scan....showing I still had all the same stones! So I go back to the doctor who preformed the ESWL and we decide that I am going to undergo a Ureteroscopy on the right side to remove the stones before my husband deploys because I needed to feel well as I would become the only care giver for our son. But of course said that he wasn't convienced the stones were the cause of my pain as they were still in the kidney and "shouldn't be causing me pain". So we do a Ureteroscopy on what I believe to be the right side and puts a stent in. He tells my husband that he removed all the stones and did find a narrowing of the ureter and believes that in fact is the cause of my pain. So I'm not crazy? Thanks. Thanks for finally believing my pain is real.

A week later and bleeding huge clots from the stent I go to the ER and they remove the stent with the approval of my Urologist. I get better for a little while and make the mistake of going on the boat a few weeks later. I water ski but make sure to drink plenty of water while in the sun. All of a sudden I am in excruciating pain. I literally feel as though I am dying. So I'm rushed to the ER, doped up yet again, and sent for a CT scan. Guess what? My stones are still there. Hmm. But in my kidney and "shouldn't be causing my pain".

My husband deploys, my doctor cancels my post op, and I move back home to be with family before the rescheduled post op. Still in pain on my right side (always only ever had pain on my right side) I go to my new general doctor to get a new Urologist refferral (stupid insurance protocol) in tears. He once again dopes me up on pain meds, tells me I have a kidney infection so prescribes Cipro and gets me in to a Urologist. I go see that Urologist. He does the CT scan/plain xray thing again and of course tells me I still have the same stones in my kidneys. He gives me meds (Norco and Uraxatrol) to see if I'll pass the stones. I don't. So a few weeks later and still in pain he pounds on my back and says that my pain is muscle/back problem (My particular pain has always been on my right flank/back just below my ribs...right were my kidney is) and sends me on my way saying to go back to my regular doctor and ask to be referred to a back specialist. Huh? So a back problem causes blood in my urine. Ok. So I'm in tears leaving his office from him pounding on my back and feel so defeated. I feel like all these doctors think I'm crazy and don't think my pain is real. So I walk out and immediately call my regular doctor who gets me in later that day. Guess what? I have a kidney infection so he sends me to a different Urologist upset that the Urologist missed the kidney infection!

So this is where my story (and I apologize its so long) turns out for the better and I finally 1) get answers & 2) find the source of my pain. I am sent to the most amazing Urologist. He is an older gentleman and one of the first doctors in Houston ever to preform a Ureteroscopy. He looks over my records and asks, "Where you having pain on your left side?" I say, "No my pain has only been on my right." He says, "Well I'm glad you're sitting down for this. In May they never went in your right kidney. They only went in your left." As in...they did the wrong side during the ureteroscopy! No WONDER I'm still in pain! He then talks to me for an hour and explains I do in fact have a narrowed Ureter on the left which was causing obstruction and a condition known as Randalls Plaque Disease, meaning the stone was embedded in the kidney but the Urologist was able to safely extract the stone from the wall and remove it. He then explains what is very important for someone in the position as you and I to understand. (Again so sorry this is soooo long I hope I haven't lost your interest)


The important stuff: (As it was explained to me)
Kidney stones in the kidney CAN cause pain. A stone can be right at the edge of the meeting of the kidney and the ureter and actually float back and forth between the opening of the kidney and ureter...a space that is very narrow. The kidney stone is not what causes pain. It in fact is the back up of urine that causes the pain. Just like a narrowed ureter (which can cause the same pain), the stone obstructs the normal flow of the urine. This causes the area preceeding the stone to swell and back up into the kidney, causing pain. The pain is only then relieved when it is unobstructed, moves a little, and then once again obstructs. That is why the pain comes and goes. It's obstructing then freeing itself, then obstructing. A CT Scan only takes an image at that moment in time. There is no way to say with absolute certainity that the stone could not have moved and was once obstructing or will obstruct in say....5 minutes from that CT Scan. But as mentioned, is hard to prove.

But you're in pain...so what do you do? This is what my doctor did. He preformed a Urteroscopy the following week on the CORRECT side (right) and also the left to make sure the left sided obstruction was ok and to remove a small stone on the left. My Ureteroscopy showed that 1) my stones were not free floating in the right either, I had Randall's Plaque in the right kidney and left 2) I had two obstructions in the right side & 3) he removed the stone on the left as it was able to be removed and not as deep as the right sided stones. He put stents in both sides (common after a Urteroscopy but in my case to help with the obstructions which by the way can cause pain and never once showed up on my CT scan) and a few days later I had complications. I ended up in the hospital for 3 days (this was last week) and ended up having a second Urteroscopy on the Right just to double check that he didnt miss anything and to remove the stents which were causing my problems (massive pain and blood as my left side was easy to bleed...I had the same issue during the wrong sided Ureteroscopy in May)

You tired of reading yet? :) I swear I'm almost done! I am now feeling AMAZING! He is unsure if my pain was caused by my narrowed ureters or Randalls Plaque stones. Because little is known about Randalls Plaque and he can not 100% say that it isnt possible for the stones not to cause pain but certainly the narrowed ureters cause pain as just like stones, they cause back up of urine. But what is important is that 1) my excruciating pain is gone and 2) that I learn to watch my urine output to decrease the formation of the stones....that at some point will eventually break through the mucosa lining and cause problems the whole time growing and growing! How fun! 3) the stents were able to correct the obstructions/narrowed ureters but will need to be closesly watched in the future

So what does all this semi nonsense mean for you? 1) Maybe you have a narrowed Ureter causing your pain 2) Maybe you have a stone that is free floating and going back and forth, causing your pain 3) You're not crazy and I at least know your pain is real! :D 4) Perhaps discuss these possiblities with your doctor and see what he thinks.

For me a Ureteroscopy found my problem. But a Ureteroscopy (and any kidney procedure) does have its risks. As you've seen in my case I did had some complications as a result but I wouldn't change it for the world. For the first time ever I do not have ANY renal pain not even a dull ache. The recovery was semi quick even with my complications, so it may be an option to discuss with your doctor and consider. As any procedure, outweight the possible risks and benefits to see if its right for you. I wish you the very best of luck and I am so sorry you're dealing with this especially at a time that should be so happy and joyous! Please keep us updated.

I thought this additional info might help. Over the years I must have passed a hundred kidney stones or Crystals. I did catch a crystal and the analysis showed they were Uric Salts. While I was in the hospital some years later I mentioned the Uric salt to my Doctor, he gave me an IV an all the crystals or stones disappeared. It's been a few tears now and they haven't come back.

And Survived

I was out with two friends fishing from my boat, a male and his lady friend , we fished for a good part of the day . My male friend decided he had enough and wanted to go to shore but his lady friend was an ardent fisherman (Fisherlady) and she wanted to continue fishing ,so I agreed to take her back out. We were anchored up in a narrow creek that didn’t have an accessible shore line. I had to urinate and normally with the guys on the boat we would do so off the stern of the boat ,but I didn’t want to embarrass my lady guest so I waited as long as I could but could not hold out any longer. I excused myself and went to the stern of the boat to urinate. When I started to urinate it appeared that I was urinating a Merlot Wine, My urine was coming out pure blood and shortly I could not urinate at all. I mentioned to my guest the problem I was having. As it turned out my guest was a registered Nurse and the Coroner in her home town. She immediately went in to action and started hauling up the anchor and yelled to me to start the motor and head back to the dock. On the way in she called her friend and told him to meet us at the dock.

Arriving at the dock they immediately took me to the nearby hospital emergency room. I spent a half an hour filling out paper work and explaining my problem and was then told to go to the waiting room. After what seemed to be an eternity I felt I had to urinate. I went to the men’s room and I was able to urinate, it started out as blood but eventually it cleared up and back to normal. I thanked my friends and I told them everything seemed to have cleared up and I was going home.

I called a doctor friend of mine and he told me that I probably ruptured a small blood vessel by waiting too long to urinate. I called my local doctor and he said I probably had an infection in my bladder. I never experienced any pain, discomfort or an inability to urinate before so I figured that it was a minor problem.

I continued to urinate normally for the next month or so and then suddenly I started urinating blood again. This time I called my local doctor and told him that I wanted to see a Urologist. The Urologist’s facility was well equipped and he ran all of the usual tests, his conclusion, I had a cancer in my bladder about the size of a half dollar, but it looked like it hadn’t gone so far that it couldn’t be just scraped out. The Urologists facility had a surgical unit so they immediately took me in to scrape my bladder. The scraping wasn’t successful as it was determined that the cancer was a not a grade two which would have made the scraping possible but a grade three which meant the cancer penetrated deeper into the tissue.

The doctor said that I had four options, Chemotherapy or Radiology which he didn’t think would improve my chances of survival. The odds were somewhat greater than 50% that they would not work. The other two options were to remove my bladder and build another one from part of my intestine, which he said if it worked it would be great, if it didn’t it would be a struggle for the rest of my life. The second would be to remove my bladder and surrounding tissue including prostate and nearby Lymph node. That procedure would require that I use an external bladder to replace my original one. I chose the latter and I don’t regret to this day (five years later). It’s slightly inconvenient but in some ways it’s helpful.

What surprised me most that there weren’t any signs or symptoms that I had this problem and if I didn’t urinate blood when I did I wouldn’t be alive today. I guess all I can say in closing is that these things don’t just happen to the other guy, you’re a target too. So be aware.

Paul L.Viverito

@kallisi

First off, you should have the doctor rule out an infection. There is certainly a chance that you have kidney stones especially if you have had them in the past! You stated that you are getting married and are soon to depart for your honeymoon. Kidney stones is not something you want to deal with right now. You should look into a product called Renavive. Renavive is a natural kidney cleanse designed specifically to eliminate kidney stones. I have referred this product to so many kidney stone sufferers that I know and they all praised me for the referral. The product is nothing short of amazing and could certainly help get you through the next few weeks with enjoyment as opposed to agonizing pain. Check out the Renavive product as it is certainly worth your time and anyone else who has or ever had kidney stones!

Kallisi
Congratulations on your marriage. I live in the UK. I am also on Topiramate, as a mood stabiliser. I have had flank pain - left hand side, haematuria (blood in the urine), right hand side groin pain, frequent urination (to start with) - March 2012! Have had several hospital visits chest x-ray, abdominal/pelvic CT - within normal limits, laparoscopy which I was hoping might detect endometriosis on the ureters (which can cause flank pain) dx dense adhesions joining ovary to colon - to be operated on when identified cause of upper GI pain. Referred to urologist who has advised bladder/kidney scan beg of Nov. Last week had feeling 'of not being able to breathe all the way in, sharp pain followed by a release' in right side had been having occasional pain on right hand side and yesterday the flank pain non-existent. What damage the stone being there if it was there, no bloods showed anything nothing showed(or was it missed) on contrast CT since March has caused I don't know, I've read conflicting things. I read with interest that you were on Topiramate as in the contraindications one of the uncommon side affects is kidney pain, one of the common side effects are crystals in the urine and other urine related complications. I would be interested to hear from anything that has had or thought they have had a stone in their kidney for a long period ..... and hope this has been helpful Kallisi - I will update on the outcome of the scans.

Txarmywife: I realize your post I am replying to is old however, I felt as though I was reading my own story. I have a kidney stone right side, that has been causing me excruciating pain on and off for a few years. Ive been told so many times, non obstructing cant be causing pain!! Want to scream! How can they tell us we're not having pain? I have gone through 2 lithotripsies and one ureteroscopy stone is still there! Was told about urine being backed up after one procedure, but no other mention! Am SO frustrated I do not know what to do!

Post Edited (tvba10) : 12/7/2012 11:16:50 AM (GMT-7)

Txarmywife and Tvba10: I have been reading a lot about people that have unobstructed kidney stones and being in a lot of pain, and their doctors telling them they should not be in any pain because they're not obstructing the ureters. I've been dealing with this very problem for years now, and ever Urologist kept telling me the same thing, I shouldn't be feeling any pain. Never mind the fact I have about 10 stones or more between my two kidneys, I'm peeing blood, get regular UTI's, have CT's showing my kidneys inflamed, and had my Creatinine level spike to 1.8mg/dl (this is high) a few times. Then I found a Urologist that looked at this a said "Yes there is a very rare condition that can cause severe renal pain even though the stones are not obstructing. This condition is so rare that maybe only 1-10 urologist have ever heard of it, but just because its rare doesn't mean that it doesn't exist, it's called Medullary Sponge Kidney Disease and I think you have it."
I'm going to post a link that you can use to research this condition, to see if it sounds like what you are going through. I know first hand how bad kidney stones hurt, and how it feels when doctors are telling you,"you shouldn't be in any pain." and you hurt like hell. Or they do believe you but don't know what do for you, because they're not sure what is really going on. You see I was diagnosed with this back in 05' when I had insurance, but after I lost my job due to a back injury I lots my insurance. I had to start going to a small clinic for people with little or no insurance, and I couldn't remember the name of the condition I had. So I had to start the process all over again because none of these doctors would take the time to call my old urologist, they just told me that nothing like that exist. So after a few months of being in a lot pain with little no help, passing 8 stones ranging in size for 4mm to 2 1/2 mm, and being treated like a drug seeker (not a good thing to be thought of when your an NREMT by trade,) I did my own research and found Medullary Sponge Kidney. As soon as I started reading about it that whole conversation with my old urologist came back to me including the name. So now I'm trying to get my doctor and his PA who have been treating my stones since July to look into this condition and call my old urologist to confirm it so I can get proper pain management, since there is no cure for this disease.
So if you have chronic UTI's, multiple bi-lateral kidney stones (a bunch of stones in both kidneys), and/or chronic renal pain of an unknown origin this might be the answer your looking for.
http://emedicine.medscape.com/article/242886-overview

Post Edited (T. Parker NREMT) : 12/27/2012 2:48:27 PM (GMT-7)

Have you been to a Nephrologist? They can send your urine to a company called Litholink. Check out there website. They have tons of information on kidney stones. I also have an exceedingly high oxylate level as well as a low citrate level and a I dont drink enough. I was told to do the following things. For the high oxylate level you need to take 100mg of vitamin B6 daily and take 500mg of calcium citrate with every meal - it must be calcium citrate because calcium carbonate causes kidney stones. The calcium citrate binds with the oxylates and elimates them when you eat. Everyone needs to drink more. You need to drink atleast 8 glasses per day if not more - look at your urine in the bowl if it isnt perfectly clear then you arent drinking enough. For my low citrate level, I also take magnesium citrate and uro-cit K (Potassium Citrate) - each 2 times per day.

Litholink is an amazing company and that is all they do. They will analyze your urine for about 20 different vitamins and minerals - and then give your doctor a 10 page summary of what is causing your stone and what to do to correct the problem. It is an amazing process. You call the company, they send you a test kit and then yuo call FedEx when you are done and they come to pick it up. It is well worth it. I have done it twice.

I started with Kidney stones in the summer of 2011, about 3 months after having an illiostomy reversed after about 18 inches of my colon reversed from a perforated colon. That makes me a high risk for stones. I had my first surgery in July and second one in October 2011. The one in October - when I went in, they took my temp as part of the prep, I had 103.8 - I was septic - it turns out one of the stones tried to pass on its own and got stuck. So, the surgery was cancelled but they rushed me in the OR anyway but just to put in a stent. Each time they did any of the Uteroscopies with Lithotripsies or even just the stent insertions, I not only would spike a fever for days but I would bleed uncontrollably in my urine for 7-10 days. The urologist never saw anything like it before. Each time, I was in the hospital for 10 days. I came close to needing a blood transfusion. After the stent was put in, it stayed in for 2 weeks and then I went back in at the beginning of November to have it taken out and then to have the surgery I was supposed to have - another ureteroscopy with laser blasting and insertion of another stent. I cant stand the stents - they would burn and itch so bad the entire time. I seemed to do okay for awhile - stones were cleared out of both sides. Then 2012 came and I had more stones again on both sides and I was getting constant bladder and kidney infections. It started in April when I got my first infection and I went on Macrobid and it seemed fine. A week later it was back. Then cipro. Then levaquin. All was fine. A couple of weeks later, it was starting again. This time the macrobid didnt work again. More cipro. Then levaquin. By time June came I was getting resistant bladder infections and was hospitalized for IV antibiotics. Then in July, I was hospitalized again. In August again - 2 times. I kept telling my urologist that the infections were caused by the stones and asked if she would blast them but she said no, they were too small and couldnt be causing pain since they werent obstructing. Back in the hospital in September, 2 times. In October, I was rushed via ambulance to the ER - unbearable flank pain and it turns out I had a kidney stone obstructing my ureter and I was rushed into surgery for a stent within hours - again I was in the hospital for 8 days for IV antibiotics - thank goodness no bleeding this time. 10 days later, I went back to have the stent out and have the Ureteroscopy and laser blasting to clean out the entire right side. Thank goodness since then, I have had no infections - it turns out, the infections were all caused by those stones on the right side = I still have stones on the left side but they are just sitting there being quiet and causing no pain or infections. Thank goodness. Now, I am using a different urologist - my original one's partner and he agrees that the infections were due to the stones. She was just afraid to operate because of my bleeding. Once I needed a transfusion but to me I would rather get a transfusion than have to go in to the hospital every 2 to 3 weeks for IV antiobics for 7 to 10 days.

As far as the high protein / low protein = my nephrologist told me to stay somewhere in the middle. I used to be on a super high protein due to having gastric bypass = on top of eating all high protein foods, I was also drinkg 2 protein shakes per day with 45 grams of protein each last year so I have slowed down on that. He said we need protein to stay nurished. It isnt healthy to live on carbs, yes some are okay but a high carb diet is putting us at risk for diabetes and I finally got rid of that by losing the weight and I dont want that to come back.

The fact that you had a stone grow from 2.5 mm to 10.5mm in 2 months that is insane and you need to find out the cause or you are going to be in big trouble. Some people with super large stones end up needing surgery to get rid of stones, no lithotripsies or ureteroscopy. Large stones that are called staghorn stones end up needing open surgeries - there is a procedure where they make a 1 inch procedure in your side and they can vacuum out the stones. Stones that large cant be done with a scope or lasered. as far as pain goes, they are all unbearably painful. I had a 4 mm stone that was stuck and I thought I was going to die and that is with a fentanyl patch on and with high dose oral dilaudid.

I have a history of stones also. NOT FUN!! This has been going on for about 8 years now and I have never been able to pass on stone on my own. The other night I had a bad attack so I got an appointment with my urologist. They did an Xray and a catscan. The tests confirmed a few stones in each kidney. I have had a fever on and off for the last week now. So the Dr. puts me on Cipro and basically tells me I should NOT be in any pain because the stones are still IN the kidneys. She told me to just take Motrin which obviously does NOTHING for the pain. I read the other stories and I am glad I am not crazy!!!

I am so sorry that you have joined the Kidney stone club.  I will tell you that if there were no stones seen on a CT, then there were either no stones at all or they were so tiny then they really meant nothing.  A CT scan can see stones as small as 2mm unless they did it with contrast (which they shouldnt use for kidney stones).  If they were smaller than 2 mm, then they couldnt have been causing any troubles.  A 6 mm stone that you have now, your urologist is correct in wanting to remove because it can get stuck when trying to pass.  Is it stuck in the ureter now? or is it in the kidney? 

My story is a long and complicated one.  I had a bowel obstruction and perforated colon in October of 2010 which caused me to lose 18 inches of my colon and ultimately needed an iliostomy.  After 3 months the illiostomy was reversed (thank goodnes - it was the worst 3 months of my life but it did save my life - they didnt think I was going to make it after the perforated colon).  Well, the reversal was in February of 2011 and the bladder infections started in April.  By June I was walking around with terrible back pain but didnt know what it was.  In July, my Endocrinologist sent me to the Urologist because my Urinalysis was loaded with protein and blood but no infection.  She sent me for a CT scan and 2 days later I was on the operating table - 4 stones on the right side - 1 was obstructing the ureter and I had 3 on the left.  It was the beginning of a long year and a half.  She did a cystoscopy and lithotripsy and blasted the stones with a laser and inserted a stent.  After the procedure, I lost a ton of blood and spiked a fever of 104 - was hospitalized for 9 days.  A week after I got home, I finally got the stent out - thank goodness it was torture, it burned and itched so bad.  After that, I got so many more bladder infections.  It took until October before I could finally have the left side done or so I thought.  I was scheduled for the middle of October.  The day I went in for the surgery, I felt fine other than I had terrible back pain all week but I had a KUB 2 days before and a CT the week before for something else and I was told all was fine.  I got to the hospital and I had 103.8 and I was septic.  My urologist called my bariatric surgeon in New York City where I had my gastric bypass because she is the one that did the CT scan (she was covering for my original surgeon) - it turns out the CT showed an obstructed ureter the week before but since it was related to my gastric bypass - she was looking to see if I had another bowel obstruction and she knew I was having kidney stone surgery, she failed to see the need to tell anyone that I had the obstructed ureter and let me walk around septic for a week.  If I were ever to sue a doctor it would have been her but I was so sick and not up to it but my urologist could have killed her.  So, they had to cancel my surgery but still had to take me into surgery to insert a stent for 2 weeks in order to avoid my from shutting down.  My Creatinine was through the roof.  So, I went back in 2 weeks and they took out that stent and then performed the original surgery and put in a new stent.  Each of those procedures, also caused me to bleed severely and again the lithotripsy also caused me spike a fever of 104 again.  I was in the hospital for 8 to 10 days for each time and I had a blood transfusion this time as my hemoglobin got down to 7.7 this time, the other times it went down to 8.1.  For some reason my body doesnt like having foreign bodies in it.  those surgeries were in Oct and Nov 2011

Then in 2012, the bladder infections were the main problems for me.  At first we thought the kidney stones were better.  My nephrologist tested my urine through a company called Litholink - that is all they do, you can check out there website - they do very thorough testing and I take tons of supplements to prevent the stones and it really helps - it all depends on what type of stones you have.  YOu can follow a certain diet too and you also have to drink alot.  I will list all that I take at the bottom because I think it will help alot of people.

Starting in March, I was beginning to get bladder infections again and I was taking Macrobid which wasn't working so I went on Cipro. At first it worked but then I got Yeast and needed Diflucan.  Then they kept coming and I would go back on Cipro and then that stopped working and I would try Macrobid again and nothing, so we tried Levaquin and it worked at first and then that stopped working.  I am allergic Penecillin, cephalosporins (which are keflex and all things that start with Ceph), sulfa and cleocin.  So, that doesnt leave anything else to treat a bladder infection with.  So, by June when the bladder infections started coming back resistant to all oral antibiotics accept for the things that I am allergic to, I had to be admitted to the hospital for IV antibiotics.  They treated me with Durapenim which is very strong and very effective.  I got better and 3 weeks later I was back in the hospital, another infection.  Back on IV antibiotics.  This time, I was on Vancomycin and Diflucan again.  Then 3 weeks later, again - back on Durapenim.  Then 3 weeks again - This time Meripenim.  Each time they checked me for stones and up until October, even though I had unbearable flank pain, I kept being told it cant be my kidney stones, because they were small and they were in the middle and bottom of the kidneys.  There was only nephrologist that said the infections were due to the stones and I agreed with him but my urologist refused to operate. By September I was in the hospital with infections every 2 weeks, it was insane and my PCP's partners were getting annoyed at me saying I was faking or elevating the amount of pain - I told them to try to live one day in my shoes with a kidney stone.  Then one night in October, I was playing BINGO and the pain in back was so bad I thought I was going to pass out.  Now, I have never passed a stone before.  They always get stuck when they try, even it they are tiny = that is why I told my urologist to not wait even if they are tiny because they are going to get stuck and she said, they wont.  Well, on Oct. 16th at 8pm, the pain started and by 4 am, I called 911.  By 7 am, I was on the operating table.   A 4 mm stone decided to try to pass and it got stuck in my right ureter.  Thank goodness, my urologist partner was there that day and he operated.  So, he was great.  All he did was put in a stent and then on Oct 31, Halloween my urologist did the full surgery.  When I asked her to do the left side - she basically said she wont be my uroloigst anymore.  We dont see eye to eye.  So, I now use her partner and I am very happy about that.  I will go back to him in a few months to talk to him about doing the left side if anything is still there.

The best thing happened though and I was right all along - now that the stones are gone on the right side - I have had a bladder infection since the surgery in October and that is a miracle.  It is so nice to not have constant flank pain and to not be in the bathroom all day and all night long.  I cant stand when doctors think they know everything when we know our bodies.  I even had my nephrologist agree with me and she still said he was wrong.

As far as treatment for stones - Calcium oxylate stones - 100mg of vitamin B6 daily, drink atleast 64 to 80 ounces of water a day, take 500 mg  calcium citrate with each meal - this binds with the calcium and removes the calcium oxylates.  It must be calcium citrate not calcium carbonate - carbonate causes stones.

If you have a low citrate level - in addition to the calcium citrate - you should take  300 - 500mg of magnesium citrate with each calcium dose and Potassium Citrate (this is a prescription called Urocit K) and it comes in 5MEQ, 10MEQ or 15MEQ - that is up to your doctor.  I started with 15MEQ, the usual starting dose and my nephrologist just doubled it 15MEQ, 2 times per day.  This is a very important supplement that is only used as a kidney stone preventative.  It isn't the regular potassium that people take for low potassium levels that is potassium chloride - this is potassium citrate.

People that have uric acid stones - there are other treatments that I am not familiar with because I dont have that type of stones.

Anyone with stones, should ask to have there urine sent to Litholink - it is so much more detailed than any other lab and the report is amazing.  Check out there website. YOu can see a sample report and also learn alot about stones.  There is a patient section, a physician section - I read both

 

One thing I forgot to say, I am not quite sure why any licensed doctor would tell you that it is safe to let a 10 year old to wait 3 days with a 6 mm stone that is lodged in what you are saying the uretha ( I gather you mean the ureter?) Where do you live that they do ultrasounds for kidney stones? They should either do KUB (an xray) or a CT scan. Ultrasounds cant see the ureters = so it is possible that it was in the ureters the entire time, it may not have dropped over the 4 hour period. Stones cant be seen in a ureter on ultrasound.

The first mistake was listening to a trauma surgeon that knows nothing about urology. They should have transferred her to a hospital that had a urologist on call, even if it meant using a helicopter. You meantioned you are in NY - wear? There is nowhere in NY state that isnt reachable via helicopter that cant get to either a hospital in lower NY = NYC, Westchester or even Rockland County where I am or in Upstate, you have Albany Hospital and I am sure there are plenty of other hospitals in NYS with good urologists. She shouldnt have suffered. I also cant see how in 3 days a 6 mm stone could have worn a hole in the ureter? Did she need additional surgery to sew it up? A stent just opens up the ureter to allow urine to flow through which is what should have been done the first night but if there was a hole, she would have needed surgery.

I forgot to comment on the lemons in my other post. Yes lemons are good and so is any type of citrus. Orange juice is very good too. If you do a search on the internet = and look for foods that are high is oxylates vs low in oxylates. I had a link to a site a ways back. If I can find it, I will post it. Many foods are good for calcium oxylate stones and others are terrible. Citrus foods are great, chocolate and caffeine are terrible.