Kidney Stones Share from your experiences

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Mikeinnc
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/7/2010 7:46 AM (GMT -7)   
   Hi everyone,  I was hoping there would be other people here to share advice about what they do when they have pain from a kidney stone. I have had a dozen stones over the past 15 years (calcium oxylate). The first thing I do when I start to feel pain is to take an anti inflamatory, since when the stone gets stuck, the tissue around it becomes swelled and inflamed holding it in place. This really helps and can save hours of pain. I wonder why my Urologist never told me?  This can be any kind of Ibuprofen, just look on the front of the bottle. This is just common sence,  I take them at the first sign of pain, before I get nautious and can't keep them down.... then it's too late. 
 
   I am not a doctor, but I learn from my experiences, and have spent many sleepless nights reading about stones on the internet.
   Yes,  I currently have a stone, but haven't had time to go to the doctor.
 
   With my first stone, I let the doctors go in with a scope and they put a stent in.  I will never let them do that again.  It was the most painful thing to wake up from, the first time you urinate after it you pee blood that burns like nothing you can imagine.
 
   I have had two stones broken up with shock wave  lithotripsy,  you check in for outpatient procedure and your out by lunchtime peeing gravel.
    The last time I had a 6mm stone,  I told my doctor " When can we do the procedure,  I'm not coming back every three weeks.  If you won't  agree to that, I will find another doctor who will."   of course I had insurance at the time...
 
     Anyway,  I appreciate all comments, criticism and help.    Thanks,    Mike
 

TVEditor
Regular Member


Date Joined Aug 2008
Total Posts : 481
   Posted 5/8/2010 10:59 AM (GMT -7)   
My experience with the scope and stent are identical what you described - a horror story. I read about and hoped the urologist would opt for lithotripsy but apparently that is not done around here.

All I've tried so far is to reduce the amount of nuts in my diet and drinking a diluted lemonade on a daily basis. The lemonade may have had something to do with the elimination of a stone I had but it is probably too early to tell.
Chris - Forum Moderator, Diabetes

~ Diagnosed Type 2 in July 2008 ~ Dropped 60 or so pounds after following HealingWell advice ~
~ Diabetes under control / no meds - so far - knock on head

I used to eat 100% wrong -- now I eat 95% right


Mikeinnc
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/10/2010 1:07 PM (GMT -7)   
I have tried alot of things and changed my diet, what i drank, for 2 years all I drank was water, my pee clear as water for 2 years!!! and still got stones. The lates thing I've been told is to go back to drinking coke and pepsi, they say the phosphoric acid in the sodas dissolve the stones. I think it's working so far.

I believe the saying that "There's no money in the cure" why cure everyone when we can treat them and sell prescription drugs?

I started drinking nothing but coke cola for the last two weeks, and have been peeing little stones since.

Brigette_LA
New Member


Date Joined Jul 2010
Total Posts : 12
   Posted 7/9/2010 7:56 AM (GMT -7)   
To help relieve kidney stones, you should try Vita Coco, it's an all natural coconut water that helps you pass the stones quicker.

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/17/2010 8:23 AM (GMT -7)   
Wow this is something I might now something about.  At the age on 19 on new years eve I started my painful journey in stone land.
 
smilewinkgrin  
 
It is 21 yrs later and I have found out a few things that help and keep the stones away!!!!
 
1. Drink cranberry juice all the time!  Whether you are in pain or not alway drink the JUICE!
 
2.  When the hint of pain starts to ache in your back drink 1/2 a beer. (I knowit sounds insane) My mother who was an RN learned yrs ago when a doctor prescribed a beer to a patient.  It can really work.  It like annoys the kidney and makes you want to pee.
 
3.  At last resort move into a bathtub.  This is at the point when you can't find a comfortable position to sit or lay in.  Use only enough water to cover you to your flank, lower back.  Then relax your bladder and let the urine flow.  I know it sounds gross but it does help.  WIth all the spasims that the stone creates this will help.  Drain the water and start over.
 
4. Lavender Oil in the bath water.  Just a drop or two.  Its a natural relaxant and smells of pine trees.
 
After Ihave done all of these I got to the ER and get the meds that will just knock me out then I don't care!
 
I hope something helps in the mess I just typed.
 
Bless you all
Laurie
Kidney Diseases and Disorders
              Moderator
 
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........


ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/3/2010 4:45 PM (GMT -7)   
Hi all, new member today. 56 male
Have my first meeting with Urologist tomorrow (Aug 3rd)
Having slight ache in the Kidneys and blood three times in the urine. Cat scan last Monday and they advised that I had a blockage right side (blockage for a lengthy period) but no signs of stones. Also swelling in the Kidney and tubes I think.
Uninate often thu the day, and minmum three times during the night.
Blood only appeared after heavy work and exertion in the heat.
Not sure what to expect?
Any one have any info on the doctor I have been assigned to.... Dr Mohamed El Harram from Peterborough Ontario.
Any help to find out this guys credentials and the good and the bad? Appreciate the help.

Thanks
ontoo

TVEditor
Regular Member


Date Joined Aug 2008
Total Posts : 481
   Posted 8/3/2010 4:57 PM (GMT -7)   
I tried the name on

www.ratemds.com/social/

... but didn't find him (her?)

Maybe you'll have better luck?
Chris - Forum Moderator, Diabetes

~ Diagnosed Type 2 in July 2008 ~ Dropped 60 or so pounds after following HealingWell advice ~
~ Diabetes under control / no meds - so far - knock on head

I used to eat 100% wrong -- now I eat 95% right

ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/3/2010 5:02 PM (GMT -7)   
Thanks Chris
It may be Doctor Mohamed El Harram or (Elharram one word).
I have seen it both ways.

ontoo

ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/3/2010 5:10 PM (GMT -7)   
Chris, found Dr Elharram in the web site... info below...

Name Sex Specialty City Last Rated # of Ratings Overall Quality
El Harram, M.A. M Urologist Peterborough, ON 4/27/10 7 3.2

Do you know what the rating means "7" and the Quality of "3.2"
Quality of 3.2 doesn't sound good.

ontoo

TVEditor
Regular Member


Date Joined Aug 2008
Total Posts : 481
   Posted 8/3/2010 6:47 PM (GMT -7)   
It's difficult to say ontoo. My urologist was rated very low by a number of patients on that site, in terms of just being friendly and/or understanding but as my GP told me, "You're not going to him to make a new friend." As it turned out in my experience, he was very efficient (the procedures went very quick ... a good thing as far as I was concerned) and knew his business (my problems went away or at least, abated). All in all, I didn't have a bad experience with him, other than him being quite abrupt when I asked questions. When I talked to my GP about this, he recommended that, in future, I 'answer his questions as opposed to volunteering information too quickly'. That seemed to work, for whatever reason. There are only 3 urologists where I live (Thunder Bay) and the guy I saw was recommended as being the best. 'Best out of 3' doesn't necessarily mean a lot but everything worked out OK.

As far as I know, the www.ratemds.com/social/ site is helpful in terms of patient experiences from their perspective but I would only use the information as a guideline.

Try not to worry too much -- the procedures are uncomfortable and embarrassing to a degree but not painful and they are quite quick.

I'm no expert (only had 3 or 4 kidney stones in one episode) but would be glad to try & answer any questions. If I can't, there are others around here that I am sure could.
Chris - Forum Moderator, Diabetes

~ Diagnosed Type 2 in July 2008 ~ Dropped 60 or so pounds after following HealingWell advice ~
~ Diabetes under control / no meds - so far - knock on head

I used to eat 100% wrong -- now I eat 95% right

ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/4/2010 4:29 AM (GMT -7)   
Thanks for the confidence Chris.
See the doc this morning. Will let you know the status.
Thanks
ontoo

ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/4/2010 6:28 PM (GMT -7)   
Well Doc was cranky when I started to ask questions like flexable or ridged probe. His response was ... "What differnce does it make" So I let it go. He ask a few questions on the symptoms. Did not want to see the Ultrasound. Inconclusive, I have to scope to see.
So now I wait for them to set up the appointment in the hospital. May be about the 3rd week in Aug.

ontoo

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/5/2010 5:30 AM (GMT -7)   
ontoo,,, Welcome to the forums I hope you find some support and answers.
 
I have had many scopes.  They are an inconvience but they do let the doctor see everything that is going on.
 
I have also noticed that AOLT of doctors don't like to be directed.  Some are great and welcome the research and information but most really get annoyed.
 
How many Urologist have you had?  I have had about 6 so far still searching for the one that doesn't have a god complex though..  smilewinkgrin
 
Keep us posted
 
Laurie
Kidney Diseases and Disorders
Moderator



40 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........

ontoo
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/5/2010 6:10 AM (GMT -7)   
Hi Laurie,
This doc is my first one. Sounds worse that trying to find a good used car salesman. Can't trust any of them. Will see what the first scope defines.

ontoo

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 8/20/2010 7:59 AM (GMT -7)   

Hi Ontoo,

I haven't posted in a long time but thought I might be of some help to you if you haven't already gone for your scope.  I had 12 of them this past year as well as surgeries to repair my ureter tube three times, a deformed tube in my kidney and stents placed for 10 months.  The scopes themselves aren't bad depending on your pain level; I have a very high pain tolerance so they didn't really bother me.  The worse thing of all is the bladder spasms, they can be extremely uncomfortable following the scope for a few days so ask for something for spasms just in case.  Not everyone gets them, but if you do, you will definitely want meds!  As Laurie said you may have to "shop around" for a good urologist, I'm on my 7th and have finally found a fantastic one!  You should be treated as a person with unique needs.  My dr and I only communicate through cell phone and he has gone above and beyond to help me through all of my kidney issues.

I wish you the very best and hope you get everything figured out.

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/bunion & 2 neuroma surgeries/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/ c difficile-12 kidney surgeries 5/09-4/10
 
There's AWAYS HOPE; there's a doctor out there that WILL help you and things WILL get better :):):):):)

awty
Veteran Member


Date Joined Aug 2010
Total Posts : 790
   Posted 9/14/2010 9:04 AM (GMT -7)   
Well on Friday, after working a nightshift, I went to bed, and woke during my sleep to use the bathroom. I was still in my sleep state, but my goodness, I woke up really quickly with the worst pain I have ever felt. I knew that there could only be one thing that causes so much my pain, and that I had passed a stone I didn't know I had.

This was an awful thing to go through, I ended up laying on the bathroom floor, and threw up, as the pain was too much for me. I dissociate (another very long story), and was eventually able to get myself painfree enough to get back to bed.

For the next two days, I had discomfort in my bladder area, and an awful hot burning feeling lower.

Now I have had broken bones, burst apendics, but this took the cake. I really hope it is a one off for me.

For anyone that suffers with stones, I really feel for you

TVEditor
Regular Member


Date Joined Aug 2008
Total Posts : 481
   Posted 10/4/2010 5:04 PM (GMT -7)   
ontoo: What's new with you? Hope you came through everything OK.

awty: Isn't it amazing? ... the amount of pain that is ... completely unexpected and indescribable!

finallyfree: Yes, the spasms. Nobody warned me about them except for; what I affectionately refer to as; an older nurse, when I awoke from my stent insertion procedure. No pain and when she recognised that I wanted my parts (dentures, hearing aids & glasses) returned to me, I was quite comfortable until I told her I would like to use the bathroom. She said "You're not going to enjoy that." She was right. Even worse than the stones. As was said, not everyone experiences the spasms. A co-worker breezed through the same procedure with no trouble at all but I had severe pain for all 13 days of the stent.

"The cure is worse than the disease" I thought.

Again, not everybody goes through the same experience.
Chris - Forum Moderator, Diabetes

~ Diagnosed Type 2 in July 2008 ~ Dropped 60 or so pounds after following HealingWell advice ~
~ Diabetes under control / no meds - so far - knock on head

I used to eat 100% wrong -- now I eat 95% right

foodnag
Regular Member


Date Joined Jan 2011
Total Posts : 37
   Posted 1/4/2011 4:40 PM (GMT -7)   
Hello all!

I had my first experience with a stone this past summer, YIKES! The stone was lodged at the base of the ureter, my urologist did a basket retrieval (?) with stent placement. Not wanting to go through that again if possible, I asked my MD tons of questions about why I may have gotten it, how to prevent future stone (it was a calcium oxalate stone) etc.. He wasn't very helpful other than assuring me that he'd be available should I ge another stone (thanks).

Anyhow, I have since been to my neurologist who treats me for migraines. He believes that the stone may be the result of topiramate use. Anyone else use this for migraine prevention? He suggested trying Urocit-K to prevent future stones, since I didn't want to change the topiramate. I suppose that it would be bad for business for a urological surgeon to give a patient something to prevent stones, but I also do wonder if anyone has has success with this drug? It's just a slow release potassium citrate that changes the pH of your urine to prevent stone formation. I'm always leery of adding medications, I'd rather take nothing at all, but if any of you have sufferred from chronic migraines you understand why you wouldn't want to change a treatment plan that has been working!

Thank you for your stories and help!
Eat food. Not too much. Mostly Plants. -Michael Pollan

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 2/22/2011 9:50 PM (GMT -7)   

Foodnag,

I suffer from migraines and chronic kidney stones and usually have to have them surgically removed and stents placed.  Last year I had to have stents in for 10 months.  Normally urologists don't put you on meds unless you have abnormal tests results and/or chronic stones.  I also take topamax as well as 2 other meds every day for migraines.  My urologist never suggested the topamax use as a cause for my stones although I have read it in the drug warnings.  I was put on Urocit K in Sept. then changed to Polycytra K (same thing just in liquid form) by my urologist and am closely monitored by a nephrologist.  So far I haven't had any stones:) but I continue to have extremely low potassium levels.  Urologists want what is best for their patients and do NOT want them to suffer.  I would talk to your urologist before starting any med for the kidney as urocit K can be hard to take (on the stomach)and you have to have blood levels taken.

Hope this helps,

Judy

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