Chronic Kidney Stones anyone?

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tysmyboo
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   Posted 6/15/2009 11:14 PM (GMT -7)   
I have had chronic kidney stones (once during pregnancy..OUCH!) and I am curious about other people's experiences. How often do you have them? What is your treatment plan of action? How long does it take to "pass"? and Have you found out WHY you get frequent stones?
 
I'm very interested.
 
Thank you!
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finallyfree
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Date Joined Sep 2008
Total Posts : 470
   Posted 6/16/2009 1:51 AM (GMT -7)   

Hi Sara,

I too have chronic stones.  My previous dr said that I pass them all the time but I have had to have them surgically removed at least once a year for the past 5 years.   This last bout of stones has been going on since February.  As a matter of fact, I'm having surgery again today,  this has been the 3rd time since March. I had lithotripsy done then and 2 came out, then on May 7th I had a nephroscopy done, they found numerous and placed a tube in my back; following that procedure I got c difficile due to getting too many antibiotics; I had a subtotal colectomy last July so I have to be very careful with antibiotics.

Was rushed to my colectomy surgeons hospital where a new uroligist placed a new nephroscopy tube, said I had a blockage and got an infection also have stone in ureter, was placed on antibiotics, probiotics, and super yogurt 3 xs a day. So now am finally going to have tube removed after all this time, stone removed, stent put in and blockage found.

Have been told in past my stones were uric acid ones and given daily meds to take, also told to aviod spinach and tea; other than that not much else.  My new dr says will do complete workup once c diff is gone to figure out what to do; supposedly he specializes in stones and he trained under the dr who invented the nephroscopy procedure sooooooo I'm hoping that this time he will figure something out bc it gets a little tiring doing this over and over again not to mention PAINFUL cry .

I am looking forward to hearing what others have to say also.

 

 


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Jeannie143
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Date Joined Apr 2004
Total Posts : 6056
   Posted 6/16/2009 6:42 AM (GMT -7)   
I passed my first stone at age 14 and have had chronic calcium oxalate stones since then. I've passed two small ones (the size of a pearl pin) at home and had two surgeries to remove the 2-3 cm. stones.. er... rocks! about 28 years ago, after my urologist told me that he would remove stones as long as I made them, I found a nephrologist who initiated a new plan of action.

He started me on 25 mg. of hydrochlorothyazide (a.k.a. Hydrodyuril) daily. I have mild hypertension and so this medicine served a dual purpose. One of the side effects of hydrochlorothyazide is that it retains calcium in the blood stream so that it doesn't spill out into the urine. While maintaining this dosage I remained stone free for over 15 years. At one point the doc decided to try dropping the dosage to 12.5 mg. Within a year I had a new stone so I went back up to 25 mg.

Two of my brothers make stones and so they told their doctors about this treatment. They are now having successes like mine. Hope this helps someone.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


LLPLUV
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Date Joined Mar 2009
Total Posts : 1158
   Posted 6/17/2009 11:13 AM (GMT -7)   
I have to do the GIG right now. Thank you all for creating this forum.

I have had issues with my kidneys since the age of 18 or 19. Kidney stone on New Years Day not a great welcoming of the New Year.

I have had about 200 stones, over a dozen stents, scarring from all the hoops and stents, nerve damage, polysystic kidney disease and severe chronic pain.

In the end they found out most my stones were not stones but tissue blockages. The PKD causes my kidneys to Slough or shed tissues. These blockages hurt as much as stone blockages.

My treatment is NOTHING. But pain control. I see the Nepherologist every 3 months for CT scans and Urologist if blockages won't budge. I see a PM specialist once a month. I have Nerve blocks every monday for the nerve damage. In series of 6 going back and forth from left to right sides. With 4 weeks off between series.

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


therickster8
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/17/2009 6:52 PM (GMT -7)   
hi
 i have had over 40 stones beggining when i was 18 now i am 46 i have had as many as 16 in 1 year and last 3 years 2 or 3 a year and have had o have 1 surgically removed and another one will be removed on 2 july wish i could find out how to stop getting them any clues sad

tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 6/17/2009 9:13 PM (GMT -7)   
My first stone was 7mm and I had to have Extracorporeal shock wave lithotripsy (ESWL) and that didnt work so I had
Ureteroscopy and I have only passed "fragments" of my stones because they are all too large to pass whole. I even had one wedged in my ureter and could not urinate. OUCH!!!
 
I have had 5 episodes and they are not sure what type of stones I'm making here. Oh, and I have been on HCTZ (hydrochlorothyazide 25mg) for a few years and that hasn't helped slow down my stone production...hmm, too bad that doesn't work in all cases! lol
 
I had a stent placed while I was pregnant and it was tough, not only did I have the frequent need to urinate (baby sitting on bladder etc...) but with the stent I had no bladder control. Talk about interesting!
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finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/19/2009 12:52 AM (GMT -7)   

Hi Everyone,

My new dr may have finally found the reason why I keep getting stones!  When he went in to take out my nephroscopy tube, he couldn't because my ureter had closed up with scar tissue.  He says I was born with a narrowing of the tube and over the years because the urine has built up in my kidney causing stone formation which in turn has caused scarring in the tube it has finally closed so now there is no connection between the kidney and the ureter.

He is going to try to laser through it next week and put in a larger syent for 6 weeks to keep it open.  He's about 75-80% confident it will work and 90% sure I won't get any more stones.  I'm not quite sure about the 75-80% part but I like the 90% no stone part.  We are going to discuss it more.

This is my 5th dr including a nephrologists and my last 2 besides putting me on HCTZ and Lotensin because my kidneys weren't functioning properly told me I needed to drink more because after my 24 hour urine test I didn't have enough output.  Well I always drink between 1 -1 1/2 gallons of fluids a day so this dr said they were way off the mark and should have looked into it further.

I will keep you posted as to how things go, but if this guy is as good as he seems then I will tell you all to do what I did when I couldn't find a dr to help me with my GI problems; be your own advocate and keep looking because there is a dr out there that can help you and things can get better!

I wish you all the best and am looking forward to chatting with you,

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/19/2009 6:16 AM (GMT -7)   
I hope everything works out and you are stone free and pain free. Keep us updated.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/19/2009 3:30 PM (GMT -7)   

Finallyfree

I'm alittle concernes that you doctor is giving you so much hope that this will more then likely fix the problem..... confused

I have also had many stents getting bigger as we go.  Yes they will decrease the pain of the obstruction for making it bigger the stones can drop out easier.  I just don't want your bubble to be popped..lol  I will admit it does help I'm just not sure its going to stop you from creating more stones.

Please keep us updated I would really like to follow this and see how you respond to the treatment.

Best wishes

Laurie

PS If it does stop the creation of stones if I were you I'd kiss your doctors big toe.... smilewinkgrin


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/19/2009 8:35 PM (GMT -7)   

Laurie,

Thanks for the best wishes and I am surely not thinking that this is the end.  But I do always have hope that after gone through so many drs someday I may have found the right one :-) .

I know there is not a 100% guarantee with anything but he is the first in 5 that has even given any remote possible reason for anything that I've had wrong with the kidneys.

I will keep you posted and hopefully it will be a positive outcome.

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/20/2009 2:37 AM (GMT -7)   

After I looked at it more closely it looks like he has given you a chance with his treatment, permanently dililating the uretur will ease the pains.  I know that I feel so much better.  I just have to tell the ER docs if I do pass a stone that when they do the CT scan that they will find the uretur larger so not to scare them....LOL

I'm so happy you found a doctor who is willing to at least find solutions to a painful condition.....  Can you send him to Tennessee yeah

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 6/24/2009 8:22 PM (GMT -7)   
Laurie-
I am in KY and have a wonderful urologist :-) you can email if you want his info...I know its still not close but just an idea.
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vickabee
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Date Joined Jun 2009
Total Posts : 53
   Posted 6/26/2009 4:59 AM (GMT -7)   
Tysmyboo,

My daughter is 15, and she passed her first kidney stone at 14. It was a calcium stone. She, also, takes hydrochlorothizide (1/2 a pill). The neuphrologist put her on the medicine because she has osteopenia (sorry if I misspelled it). She has had the pain and what looks like more kidney stones.

I was wondering if it seems like people with certain types of migraines seem to have certain types of kidney stones. When I was told about the type of migraines she has (hemiplegic migraines), I found out about the cause of it is the brain not sending out the calcium the normal way. When I asked the doctor about that, she said I was researching too much on the specific of the migraines. Then come to find out after she had the kidney stone (it was a calcium stone). So do you think sometimes the imbalance of certain chemicals or vitamins in the body causes migraines or other health issues and kidney stones.

Thank you. God bless you.

vickabee

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/26/2009 8:46 AM (GMT -7)   
I know that with PKD you have a greater chance of getting brain anyorisms but I guess I never associated that with getting migraines. duh I have had migraines since I was 13 years old. My oldest daughter with PKD is also prone to severe headaches. I guess I just chalked it up to her high blood pressure. I get a brain CT every 5 years but so far it shows nothing.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 10:02 AM (GMT -7)   
Ok Now you all brought something up that I never put together. I also get REALLY bad migraines. Never thought the two were connected, I always knew my BP effects my headaches. That is something to think about...

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 6/27/2009 6:53 PM (GMT -7)   
My daughter is 12 and gets stones every two to three months, and they started around the time she was 8.  Our plan of action at this point is that we have pain medication on hand, and if she does get a stone and the medication doesn't help or she has a fever we are to go to the E.R. She has a really high tolerance for pain because once she says she is hurting the stones is passing.  We are in the process of testing her parathryoid since her doctor is concerned there is an issue somewhere along those lines.
 
She did have the 24 hour urine culture done and it revealed that she is making calcium stones so at least we finally know what kind they are.

Post Edited (momto3) : 6/27/2009 8:03:53 PM (GMT-6)


vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/27/2009 7:05 PM (GMT -7)   
My daughter is 15 and periodically has problems urinating (not urinating at all). We've been to the doctors for UTIs, and then one of the times she had a test done with a dye (put in her vein) because she was not urinating. Since then, she has had three kidney stones. Now, it's been over a day since she has urinated and she has been drinking 3-5 16.9 oz. bottles of water a day. If it's not better by the morning, we'll be taking her to the doctor. She has been having some back pain on the left and left pain in her stomache but not severe (high pain tolerance also). She has been having some pretty bad pain in the middle area of her stomache. Could no urination be caused by a kidney stone also? No fever just flush looking.

Thanks.

God bless you.

Vickabee

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/27/2009 7:54 PM (GMT -7)   

Vickabee,

Kidney stones can block off the flow of urine; this could be the cause of your daughter's lack of urinating and pain.  I wouldn't wait until tomorrow morning, if the urine gets blocked completely, it's can cause severe pain.  I have an extremely high tolerance for pain but when mine was block I wouldn't wish that pain on my worse enemy.  I would call her dr and mostly he/she would advise to go to the er.

I hope she will get some relief soon; I'll say a prayer for her.

As for the migraine/kidney stone connection; I've never put the two together but I used to suffer from frequent migraines. It took my neurologist a long time to find the right meds and dosage to get them under control.  I now take 3 meds daily & 1 med when I have a migraine.

Let us know how your daughter is,

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/28/2009 2:08 PM (GMT -7)   
We took our daughter to the er. They cautherized her and got 1200 ccs. The doctor thinks it's neurological because of the passing out, seizures, retaining urine, and weakness in legs. Will give more details later when we find out. Please pray we get some answers.

Thanks.

God bless you.

Vickabee

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 2:17 PM (GMT -7)   
I will keep you in my prayers.. Wow such a young girl to have such problems. I hope they find out whats going wrong and come up with a solution.

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/29/2009 5:28 PM (GMT -7)   
We just got back a couple of hours ago from the hospital. They said her bladder was distended (I guess is the right term). They want her to go back to the urologist in a week, the endocronologist, urologist, and nephrologist. By the way, she also had a small kidney stone. They thought it was her migraine medicine that caused her to retain over 1000 ccs of urine. This was going on though before the medication. Blood sugar was low also. Hopefully, we'll have some doctor put together all the puzzle pieces to her health.

Thanks.

God bless you.

Vickabee

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/29/2009 6:42 PM (GMT -7)   
Vickabee,
You and your family are in my prayers. I hope you get a speedy diagnosis and treatment. I know how this must be weighing on your heart. Nothing worse than when your child is in need.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/30/2009 4:27 PM (GMT -7)   
Irishmom,

I saw on one of the other questions that your sister-in-law was in ICU when she was not able to urinate. How long did she not urinate and what caused her problem?
Thank you.

God bless you.

Vickabee

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/30/2009 6:13 PM (GMT -7)   
She had a hysterectomy and they sent her home without being about to empty her bladder. The docs kept saying it would get better so she stayed home and suffered two days. She got so septic that we had to take her to the hosital by ambulance. They couldn't get her fever down and had to sleep on blankets of ice. It was really scary.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/30/2009 6:45 PM (GMT -7)   

All I can say is WOW.

Vickabee I was just a few years older (18) when I started with bladder and kidney stone issues.  I will tell you from personal expierence to stay on the doctors about all this.

Irishmom4 is so right with what happened to her SIL and these things can get out of control really fast.

I hope you SIL is doing better now?!?!?!

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

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