kidney stones - check it out
I went to my nephrologist today - hadn't seen him in years. He spent over an hour with me going over my recent history of what has gone on with me. I told him about my recent experience with my kidney stones and need for emergency surgery due to blocked ureters and need for a stent. I still have more on the other side. My urologist sent me to him to have urine testing to determine what the stones are made of, to try to prevent future stones from forming. My stones couldn't be tested during my surgery since they were blasted with a laser, it would have been too dangerous to try to remove them due to the size and location.
So, after talking to the nephrologist and going over everything - he gave me a slip and told me to call this company Litholink - (link to site below) You call them up and they send you all the stuff you need to do a 24 hour collection for 15 different things that could possibly causing stones - amazingly thorough. Once you do the collection, you send it back to them and they send your doctor a detailed report. Check out the site and you can see a sample report - tons of information (they can tell what you eat, supplements you take etc all from your urine) and then they make recommendations of what to do to avoid future stones.
He said the majority of stones are due to oxylates especially in WLS patients. So, I will call tomorrow and order my package and start my collection process when I get it in the mail. Wish me luck.
For any of you with kidney stone problems - ask your doctors about this process - it could really help you in the long run.
Litholink Corporation
So, after talking to the nephrologist and going over everything - he gave me a slip and told me to call this company Litholink - (link to site below) You call them up and they send you all the stuff you need to do a 24 hour collection for 15 different things that could possibly causing stones - amazingly thorough. Once you do the collection, you send it back to them and they send your doctor a detailed report. Check out the site and you can see a sample report - tons of information (they can tell what you eat, supplements you take etc all from your urine) and then they make recommendations of what to do to avoid future stones.
He said the majority of stones are due to oxylates especially in WLS patients. So, I will call tomorrow and order my package and start my collection process when I get it in the mail. Wish me luck.
For any of you with kidney stone problems - ask your doctors about this process - it could really help you in the long run.
Litholink Corporation
Amy Farrah Fowler
on 9/10/11 2:42 pm
on 9/10/11 2:42 pm
I am another one here that has been passing stones since I was 18 (now 46), and many members of my family (and multiple generations) have been stone makers.
The 24 hour urine collection can be tested at most labs. I've taken them to both Paclab, and Lab corp, both common labs. Calcium/oxalate stones are the most common, and there are things that help like citrate (lemon juice in everything), having calcium will all food (to help bind the oxalates in the gut and pass out in the stool, rather than absorbing and making it to the kidney) taking b6, magnesium and potassium. You will likely end up on a strong prescription potassium like Urocit K, but none of these things will keep stones at bay by themselves.
Only after decades of passing them (or lithotripsy) am I barely keeping ahead of them by drinking tons of water, and doing ALL of the things above. My nephrologist found me to have very high oxalates, and low citrate, but none of those things above will do it on their own. See what your nephrologist finds, and knock yourself out to follow his/her advice, because you likely won't be able to do this half a$$, it will take full, concerted effort to keep ahead of them.
The 24 hour urine collection can be tested at most labs. I've taken them to both Paclab, and Lab corp, both common labs. Calcium/oxalate stones are the most common, and there are things that help like citrate (lemon juice in everything), having calcium will all food (to help bind the oxalates in the gut and pass out in the stool, rather than absorbing and making it to the kidney) taking b6, magnesium and potassium. You will likely end up on a strong prescription potassium like Urocit K, but none of these things will keep stones at bay by themselves.
Only after decades of passing them (or lithotripsy) am I barely keeping ahead of them by drinking tons of water, and doing ALL of the things above. My nephrologist found me to have very high oxalates, and low citrate, but none of those things above will do it on their own. See what your nephrologist finds, and knock yourself out to follow his/her advice, because you likely won't be able to do this half a$$, it will take full, concerted effort to keep ahead of them.
Yes, I Know that 14 hour urine can be done at almost all labs, even my Endocrinologist and nephrologists offices do it but this place - lithilink.com or there is a phone number to call is a special place that deals only with kidney stones, They are highly specialized and have a great reputation for both diagnosing and treating kidney stones.
First you call them and they mail you a kit with instructions on how to collect your urine - it includes a hat (big, white collection bucket for the toilet), tube to put urine in to send to lab = only send a set amount after mixing, tube of chemical to add to urine bottle, bottle for urine,
You collect the urine for the entire 24 hours and send back. They are very comprehensive. They test for: Qualitative calcium, oxalate, chloride, ammoniium, creatinine, magnesium, phosphorus, potassium, sodium, uric acid, citrate, pH, sulfate, qualitative cystine, and urea nitrogen. These can all cause kidney stones in one way or another. My nephroloigist did mention that I might need to take large large doses of B6 or some magnesium or potassium once we get the results back but not to change anything until we get the results.
First you call them and they mail you a kit with instructions on how to collect your urine - it includes a hat (big, white collection bucket for the toilet), tube to put urine in to send to lab = only send a set amount after mixing, tube of chemical to add to urine bottle, bottle for urine,
You collect the urine for the entire 24 hours and send back. They are very comprehensive. They test for: Qualitative calcium, oxalate, chloride, ammoniium, creatinine, magnesium, phosphorus, potassium, sodium, uric acid, citrate, pH, sulfate, qualitative cystine, and urea nitrogen. These can all cause kidney stones in one way or another. My nephroloigist did mention that I might need to take large large doses of B6 or some magnesium or potassium once we get the results back but not to change anything until we get the results.
Amy Farrah Fowler
on 9/11/11 3:44 am
on 9/11/11 3:44 am
Hmm. Yah, it sounds the same, other then mailing the vial. The labs are only a few miles from me, and they do collect, but they also do the actual testing there, so maybe that's the difference?
Those things are all included in the "stone panel" and I usually have protein stuff too, so I'm not sure if my doc maybe adds that in.
If your doc wants you to start with b6, I'll mention that the costco/kirkland brand of calcium citrate has a lot of b6 with it, and it's cheap. I actually had to switch brands as my b6 go too high. I hope your nephrologist gets things figured out quickly, kidney stones are no fun.
Those things are all included in the "stone panel" and I usually have protein stuff too, so I'm not sure if my doc maybe adds that in.
If your doc wants you to start with b6, I'll mention that the costco/kirkland brand of calcium citrate has a lot of b6 with it, and it's cheap. I actually had to switch brands as my b6 go too high. I hope your nephrologist gets things figured out quickly, kidney stones are no fun.
EAH
on 9/10/11 6:35 pm - CA
on 9/10/11 6:35 pm - CA
Okay, so I need some advice.
I was recently diagnosed by both US and CT scan with a 5.5 CENTIMETER staghorn stone(no joke saw it myself on the ct scan almost the size of my left kidney). Urologist says he has only seen a few this large. It will require a 4.5 hour surgery laying on my (very large) stomach while they go though my back and then I will have to have a stent placed. High chance of needing re-op as well.
Urologist bragged upon my initial meeting with him that he was the best surgeon in the area.Now, with the diagnosis he is telling me I am very high risk for surgery (clots,blood loss,stroke,heart attack etc) and he is not comfortable doing my surgery himself. He strongly recommends weight loss surgery be done BEFORE the kidney stone surgery.
I have put off getting the WL surgery because my only real option was lap band due to several contraindications mentioned below. I just can't in good conscious get a lap band knowing all that I know about it. My SIL, a bariatric nurse at Scripps-La Jolla has essentially made me promise not to get a lap band, as she has seen first hand all the problems it creates down the road. initially- waaaay back in 07 I had spoken with Dr. Cirangle about getting the VSG, at that time he told me that with my Barretts Esophagus, the VSG was contraindicated and that I would be "burning my bridge" by removing the stomach should my Barretts progress to esophageal cancer. Met with him again in late '10 early '11 and agreed upon the lap band at that time being the best option. I have had several medical issues over the last year and a half that have prevented me from progressing with the surgery. Not to mention my misgivings about the band. Now, armed with the kidney diagnosis and pending surgery, I again met with Dr. Cirangle last month. He says now that my best option is the VSG . I reminded him of the Barretts Esophagus and his advice to me years ago. He believes that when he fixes my large sliding hiatel hernia that the reflux will not be a problem and as long as I continue taking Nexium daily( which I have for 8 years) I will be fine. I'll be honest, Barretts is NOT something you want to mess with, so the thought of reflux getting worse and progressing to Esophageal cancer scares the crap outta me, especially since there will be no stomach remaining to pull up and attach to the esophogus. He mentioned the RNY as an option as well. I have a history of severe anemia ( 1 year of Venofer infusions administered into my port) and Potassium and Magnesium wasting ( i have had over 25 magnesium infusions in the last 8 months-almost every week) and my Nephrologist is still trying to determine if it is related to my kidneys or my IBD.
My fear is if I am already malabsorbing before RNY how bad will it get AFTER??? years down the road????
Waiting is no longer an option as I am battling UTI's constantly and in mild discomfort to outright pain everytime a piece of stone breaks off and works it way through.
I am also insulin diabetic, have severe obstructive sleep apnea, high blood pressure, PCOS, IBD and I know I am leaving something out, but you get the picture, I need surgery...YESTERDAY!
Please excuse the rambling and multitude of grammatical errors as I am tired and it is late..
Advice?? Suggestions??? Personal experience????
I was recently diagnosed by both US and CT scan with a 5.5 CENTIMETER staghorn stone(no joke saw it myself on the ct scan almost the size of my left kidney). Urologist says he has only seen a few this large. It will require a 4.5 hour surgery laying on my (very large) stomach while they go though my back and then I will have to have a stent placed. High chance of needing re-op as well.
Urologist bragged upon my initial meeting with him that he was the best surgeon in the area.Now, with the diagnosis he is telling me I am very high risk for surgery (clots,blood loss,stroke,heart attack etc) and he is not comfortable doing my surgery himself. He strongly recommends weight loss surgery be done BEFORE the kidney stone surgery.
I have put off getting the WL surgery because my only real option was lap band due to several contraindications mentioned below. I just can't in good conscious get a lap band knowing all that I know about it. My SIL, a bariatric nurse at Scripps-La Jolla has essentially made me promise not to get a lap band, as she has seen first hand all the problems it creates down the road. initially- waaaay back in 07 I had spoken with Dr. Cirangle about getting the VSG, at that time he told me that with my Barretts Esophagus, the VSG was contraindicated and that I would be "burning my bridge" by removing the stomach should my Barretts progress to esophageal cancer. Met with him again in late '10 early '11 and agreed upon the lap band at that time being the best option. I have had several medical issues over the last year and a half that have prevented me from progressing with the surgery. Not to mention my misgivings about the band. Now, armed with the kidney diagnosis and pending surgery, I again met with Dr. Cirangle last month. He says now that my best option is the VSG . I reminded him of the Barretts Esophagus and his advice to me years ago. He believes that when he fixes my large sliding hiatel hernia that the reflux will not be a problem and as long as I continue taking Nexium daily( which I have for 8 years) I will be fine. I'll be honest, Barretts is NOT something you want to mess with, so the thought of reflux getting worse and progressing to Esophageal cancer scares the crap outta me, especially since there will be no stomach remaining to pull up and attach to the esophogus. He mentioned the RNY as an option as well. I have a history of severe anemia ( 1 year of Venofer infusions administered into my port) and Potassium and Magnesium wasting ( i have had over 25 magnesium infusions in the last 8 months-almost every week) and my Nephrologist is still trying to determine if it is related to my kidneys or my IBD.
My fear is if I am already malabsorbing before RNY how bad will it get AFTER??? years down the road????
Waiting is no longer an option as I am battling UTI's constantly and in mild discomfort to outright pain everytime a piece of stone breaks off and works it way through.
I am also insulin diabetic, have severe obstructive sleep apnea, high blood pressure, PCOS, IBD and I know I am leaving something out, but you get the picture, I need surgery...YESTERDAY!
Please excuse the rambling and multitude of grammatical errors as I am tired and it is late..
Advice?? Suggestions??? Personal experience????
Wow, that is quite a history. I can't believe they didnt' find your stones before getting this bad - they have had to be growing for years. I would suggest in the meantime, ask your nephrologist to get the information from the website I was talking about litholink.com so you can have your urine tested so you can find out what your stone is made of. This way hopefully you can change your diet in the meantime to prevent it from getting worse. There are definite dietary changes that can affect stones and being you are having such trouble with magnesium deficiency, I am wondering if that is part of the problem as well as potassium or chronic infections. These are all possibilities for stone formations. Once they know the exact cause, they can make changes to the diet and give other supplements to change to PH of your urine.
As far as weight loss surgery first -have you gotten a second opinion? A stone that large is definitely causing kidney damage and is probably causing alot of your kidney and deficiencies, or your deficiencies are causing the stones. I am not sure if waiting another year or longer for you to get to a surgeon, go through the preop phase, have the surgery and lose the weight all before having the surgery is a great idea. This can be a long time. You really need to find out more information first about if your stone is going to continue to grow - you don't want more kidney damage to the point of failure.
We all have risk during surgeries - my RNY took 4 1/2 hrs and I had no problems. As far as which surgery is best for you - for someone with Barretts, RNY is by far the best and probably the only option especially with your other problems. I know you have the malabsorption problem but I rarely see people with low magnesium levels. So, if you would continue doing what you do for the magnesium - that shouldn't be an issue. As far as the barretts is concerned - the band and VSG - they both cause severe reflux and is totally contraindicated. RNY - is the best surgery for anyone with any type of reflux, as post op, we have a tiny pouch which forms basically no acid and almost all of us are totally reflux free. As a precaution, you would continue on your PPI medication but you should be fine and during the surgery, they would fix your hiatal hernia. I personally had a Nissan Fundoplication back in 1998 - surgery for acid reflux - I didn't have a hiatal hernia but unbelievable acid reflux that couldn't be controlled due to a faulty valve. Then 8 years later, I decided I wanted weight loss surgery. I was told that there was a chance that the fundoplication might have to be reversed since the wrap was in the way of where the pouch needed to made making the surgery very complicated. Not all surgeons were willing to do this or capable of doing this. It took me long time to find a surgeon that was willing to it and that I felt comfortable allowing to do it but after 2 years, I finally found someone. He was the best and had experience with this exact procedure and experience. So, I felt comfortable. He did infact have to reverse it but said there was a good chance the reflux wouldnt' return with the weight loss and the RNY - due to the new anatomy. He was right. As a precaution, I do take protonix daily. I can even drink orange juice daily now which I hadn't done in 15 years. The RNY will fix all your other problems as well except for the IBD.
You will need to be extra careful with your labs and supplements but it has been done and can be done. But again, please get another opinion about which should be done first and please get your urine tested so you try to stop the stone from growing further.
Any further questions - please free to PM me anytime.
As far as weight loss surgery first -have you gotten a second opinion? A stone that large is definitely causing kidney damage and is probably causing alot of your kidney and deficiencies, or your deficiencies are causing the stones. I am not sure if waiting another year or longer for you to get to a surgeon, go through the preop phase, have the surgery and lose the weight all before having the surgery is a great idea. This can be a long time. You really need to find out more information first about if your stone is going to continue to grow - you don't want more kidney damage to the point of failure.
We all have risk during surgeries - my RNY took 4 1/2 hrs and I had no problems. As far as which surgery is best for you - for someone with Barretts, RNY is by far the best and probably the only option especially with your other problems. I know you have the malabsorption problem but I rarely see people with low magnesium levels. So, if you would continue doing what you do for the magnesium - that shouldn't be an issue. As far as the barretts is concerned - the band and VSG - they both cause severe reflux and is totally contraindicated. RNY - is the best surgery for anyone with any type of reflux, as post op, we have a tiny pouch which forms basically no acid and almost all of us are totally reflux free. As a precaution, you would continue on your PPI medication but you should be fine and during the surgery, they would fix your hiatal hernia. I personally had a Nissan Fundoplication back in 1998 - surgery for acid reflux - I didn't have a hiatal hernia but unbelievable acid reflux that couldn't be controlled due to a faulty valve. Then 8 years later, I decided I wanted weight loss surgery. I was told that there was a chance that the fundoplication might have to be reversed since the wrap was in the way of where the pouch needed to made making the surgery very complicated. Not all surgeons were willing to do this or capable of doing this. It took me long time to find a surgeon that was willing to it and that I felt comfortable allowing to do it but after 2 years, I finally found someone. He was the best and had experience with this exact procedure and experience. So, I felt comfortable. He did infact have to reverse it but said there was a good chance the reflux wouldnt' return with the weight loss and the RNY - due to the new anatomy. He was right. As a precaution, I do take protonix daily. I can even drink orange juice daily now which I hadn't done in 15 years. The RNY will fix all your other problems as well except for the IBD.
You will need to be extra careful with your labs and supplements but it has been done and can be done. But again, please get another opinion about which should be done first and please get your urine tested so you try to stop the stone from growing further.
Any further questions - please free to PM me anytime.
Ms. Cal Culator
on 9/11/11 1:47 am, edited 9/11/11 1:59 am - Tuvalu
on 9/11/11 1:47 am, edited 9/11/11 1:59 am - Tuvalu
A couple of things ... but first...hitting the return key between paragraphs would sure make BIG chunks of test more readable.
I had stones that showed up as GIANT on US and CT but when they went IN there--in the kidney--with the scope and all, they discovered that several of the jumbo stones turned out to be collections of smaller stones that had connected with each other.
He blasted them to smithereens with the laser and scooped out the debris with the little scoop attachment.
If you are in the same area as your sister, I can send you info on a urologist a little north of there. (I'd put it online, but honest to DOG, there are people on the planet who follow some of us to our doctors' offices and take photos and have them posted online and all of that. So I'll PM that if you are in the area.)
No...do not get the LapBand. If Cirangle, *****ally pushed the VSG, says you aren't a good cndidate for the sleeve, you might not be. But if you can get to him, you can get to Rabkin, and that's what I'd do.
This is the ureteroscopy. Unlike the guy in the graphic, I was on Michael Jackson juice and have zero recall of the procedure.
I had stones that showed up as GIANT on US and CT but when they went IN there--in the kidney--with the scope and all, they discovered that several of the jumbo stones turned out to be collections of smaller stones that had connected with each other.
He blasted them to smithereens with the laser and scooped out the debris with the little scoop attachment.
If you are in the same area as your sister, I can send you info on a urologist a little north of there. (I'd put it online, but honest to DOG, there are people on the planet who follow some of us to our doctors' offices and take photos and have them posted online and all of that. So I'll PM that if you are in the area.)
No...do not get the LapBand. If Cirangle, *****ally pushed the VSG, says you aren't a good cndidate for the sleeve, you might not be. But if you can get to him, you can get to Rabkin, and that's what I'd do.
This is the ureteroscopy. Unlike the guy in the graphic, I was on Michael Jackson juice and have zero recall of the procedure.
EAH
on 9/11/11 7:18 am - CA
on 9/11/11 7:18 am - CA
A couple of things ... but first...hitting the return key between paragraphs would sure make BIG chunks of test more readable.
Ummm yeah, making note to myself.
Nope, don't live in San Diego,sadly. I'm up in Sacramento.
Saw the post about the freak who took a picture of Mrs. D at the Dr's office.... that's just all kinds of wrong. I'd be up their ass so fast they wouldn't know what hit them.
Utreteroscopy?? No major surgery??? This was never presented as an option??? I seriously need a second opinion........
Okay, so no crap band but not understanding what you mean about VSG? Cirangle originally said I was not a candidate for VSG back in 2007, due to Barretts Esophagus, but now has changed his mind and says it's the best option for me. My concern is reflux, he makes VERY small, tight pouches and I don't think that is negotiable.
Are you saying I should consider the VSG but go to Rabkin instead??? For the VSG???
Ummm yeah, making note to myself.
Nope, don't live in San Diego,sadly. I'm up in Sacramento.
Saw the post about the freak who took a picture of Mrs. D at the Dr's office.... that's just all kinds of wrong. I'd be up their ass so fast they wouldn't know what hit them.
Utreteroscopy?? No major surgery??? This was never presented as an option??? I seriously need a second opinion........
Okay, so no crap band but not understanding what you mean about VSG? Cirangle originally said I was not a candidate for VSG back in 2007, due to Barretts Esophagus, but now has changed his mind and says it's the best option for me. My concern is reflux, he makes VERY small, tight pouches and I don't think that is negotiable.
Are you saying I should consider the VSG but go to Rabkin instead??? For the VSG???
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