Kidney Stones

[starrygirl]

Have any of you ever had kidney stones? I've had them 3 different times (although it's been several years since the last one). Everytime I had a kidney stone, my entire urinary tract felt inflamed, irritated and sensitive.

I haven't been officially diagnosed with IC or OAB, but I was wondering if there may be a connection with a history of kidney stones.

[Dixiefireball]

i just passes a kidney stone about a mth ago this was the first one i have ever had i'm 29 was dx with IC in june 2001. I have heard others ladies say they have had the kidney stones.
sending you hugs and prayers I really hope you feel better soon
Rhonda

[Stacydfld]

I have said this over an over again on this subject, but Someday they will find out that IC is not only in the bladder , but in the kidneys. I have gotten a couple of my doctors to listen to my theory on that. I am not saying this to scare people just to be aware that there are a lot more people out there with IC that have kidney problems then you think. A lot of people just don't talk about it. Or they think that pain that goes in there back is from there bladder, when its not.

So the anwser to your question is yes. I just got over having stones also, but with this IC , I have had unexplainable problems with my kidneys.

Take Care,
Stacy :hi: :toosh:

[Stacydfld]

opps I did not mean to put this at the end of my post :toosh: . SORRY.

Stacy:D

[jerry westgarde]

I have also had a kidney stone operation, and yes my urinary tract was very inflamed and with the stint they put inafterward. My IC pain was intensified during and after the operation, but settled down two weeks after the procedure.

[Dixiefireball]

Stacy
My doctor has the same theroy as you do and since i do have so much problems with my kidneys i do believe it. i feel that something like ic can get into the kidney and cause pain like ic. its ic of the kidney.:(
the doctor hasnt been able to prove it yet but my doctor does do research and still study up comeing new things on ic. but they are working on proveing it can happen.

[Stacydfld]

Yes, It good to hear that people are finally open to the idea. So what kind of research are they doing?? I I saidthat I would even be willing to be a guinea pig to find out . I mean out kidneys and our bladders are connected there is no way there cant's be a connection. Now don't get me wrong, some people who don't have a bag case of IC to begin with my disagree. But those of us with real servere cases may notice more of the kidney systoms then those with less servere cases.

starrygirl: I had the same exact thing just happen to me about 2 months ago. Iwas in the hospital for a week cause of it. God it was real bad.

Thanks for writting guys....

Stacy:thumbsup:

[Stacydfld]

OK serious spelling and grammer issue above. SORRY!!!!!:rolleyes:

[tarasmiles]

I have a kidney disease called Cystinuria. I have lost my right kidney to it. I produce kidney stones constantly and I pass what they call "sand" and "gravel" all the time. I always thought that my IC came from the fact I have Cystinuria. Cystine stones are the most rare stones there are so don't feel you have this problem.... but I find it interesting that others have stones too... When I'm passing a stone or sand I have more flares and when I have a stent in my kidney I really get flares...
Tara

[kelly McC]

I have had 3 kidney stones and many kidney infections with constant kidney pain. My doctors have ruled everything out when a stone is not present. They tell me I am a not in the norm and it puzzles them.
Kelly

[Stacydfld]

Ok well I just went to the ER this weekend and I am so upset. I really though it was my Right kidney when he hit my back I went thru the roof. I was in so much pain. Well they never did a clean catch urine on me just pee in a cup regular. They did a cat scan and came back and told me that my kidneys showed no stones and that i hsve a cyst on my right overy. Also have a UTI. Well I don't get it cause I was just tested and they said no UTI. Why when he hit my back did I go thru the roof??? Also of course he didn't no a thing about IC.So he sent me out of the ER with Antibiotics and Anaprox. Ya like that is helping. The pain in my back is killing me. I am so confused no stones, but why all this pain. Also no clean catch isn't that going to show bacteria anyway???


HELP!!!!!

[debzx]

I am waiting for a renal scan ( next week) Apparently after months of loin pain and IC they think i have an obstruction in the right kidney!! could eb a stone not sure yet no stones have shown up on previous xrays ect.

there has to be a link between the two!! its almost 1 year since my jorney began and only 2 weeks since i had a firm IC/Mass cell diagnoses. I wont be surprised to find a link there somewere??


debzxx

[ICNJess]

Hi all,

I can officially add kidney stones to my health resume. I've been diagnosed with IC for over a year now, but at the age of 21, I can honestly say this takes the cake. This was so unbelieveably painful. I was so sick too. I had called the uro's office and got the nurse. (This was about a month before the stone passed) I told her I was having horrible kidney pain. She says to me, "How could you possibly know where your kidney is? It must be a back spasm. Just go to Urgent Care." Well I refused. Call me crazy, but I think I know my own anatomy by now, at least when it comes to the urinary system!

So a month passed and I got increasingly ill, I couldn't eat, I was in so much pain, and the uro's office thought I was making stuff up apparently. Well one morning, I went to the bathroom, and this 2-3 inch long thing came out all full of blood. (Sorry to be so gross) and after that my kidney slowly began to feel better.

Then the doctor decided to do an ultrasound, but by that time the stone was gone! My family doc had ordered the ultrasound because my urine was full of blood and protein, as well, I just found out, with crystals.

The uro's office never apologized, and even said they weren't sure if I had passed a stone. But I know better, because I slowly began to feel better after that. Not only did I have a stone, but it turned into a nasty kidney infection, and it had been making me very ill.

If you ever think you're dealing with a stone, go to the doctor. Insist on it! Don't make the same mistake I made...

Ok my long story is over lol...but yes, I've had kidney stones, and I agree whole heartedly that there is a link to the bladder with it. Too many of us have kidney problems.




Stacy--

Just one more story. My doctor always caths me. Why? Because it is impossible for me to give a clean catch. I have recurrent yeast infections, so when I do clean myself and do the urine catch, flora and yeast show up in my urine. That will come back as a UTI...but it's really not. Also, is it possible that you could have Fibromyalgia? I had flank pain before my stones, and it was from Fibro. My whole body is just so sensitive to poking and hitting, that I go through the roof as well. I hope you find some answers!

[Stacydfld]

jess214:

Thanks for all your info for sorry for all your problems..... wow.. i know how it feels. I am just at the very end. Where ..... GOD help me sometimes I wish I would not be alive instead of dealing with this....... I am sure alot of you feel the same. I don't mean I would do anything I am not that kind of person, but you just get sick off being sick.

About the Fibro Yes there was talk years ago about that, but then the doctors never said anything more about it.

About the Kidney thing, I wish doctors would start to look at this evedence and start some research. I think they should do a Kidney biopsy and see if the same stuff they find in our bladders is in the kidneys!!!

This is a great topic guys....... We should keep this up on this. Also keepi talking to your docs about this to see if we can get this newer research going.....does anyone know if there are any articles on this subject????

Again thanks everyone for all your input.....

[Hangin' Tough]

I have passed 12 stones and had 1 surgically removed. After the surgical removal and stent is when I started having problems and was diagnosed with IC.

Steve

[donutgirl]

Add me to your list of ICers with kidney stones. In fact, I currently have 3 small stones in my left kidney, which are not on the move, thus before my diagnosis, the uro. kept telling me I should not be in so much pain over 3 small stones that are not even on the move. I finally had to tell him "IT'S NOT ALL IN MY KIDNEY, FOCUS ON MY BLADDER!" Anyway, YES also to the fact that when I am hurting bad w/ the IC, my kidney hurts too.:rolleyes:

[kelly McC]

I also have another stone (new one) yikes it hurts and I am hoping this is the last one:(
Kelly

[ICLori]

My IC started with a kidney stone and I've had three so far that I know of.


I also have mild chronic renal insufficiency probably as a result of a bit of kidney damage from "stranding" They called it of my kidneys and the stones being stuck for a couple of weeks in the ureters on both sides (one was stuck one time, the other, the other time. )

Blessings, Lori

[MAMASITA4]

I, too, can be added to the list of IC'ers w/kidney stones. Have had two separate episodes. Don't let anybody fool you as to the "size" of the stone and pain that would be associated with the size. Both times, they hurt like hell. Excuse my language, but there's just no other way to put it.

The first stone was like the size and consistency of a sandspur or a "sticker". Pricklies all around it. Took me over 3 days to pass that one (in the hospital!)

Second one was much, much smaller, however it had a large spike on it. My uro told me that it really depends on the matter of which the kidney stone is made of as to how "hard" it makes the stone and the ability to be able to pass it.

I sure wish that this was a list I wasn't on....I'm finding myself on too many "lists"!!!

[ShawnaAB]

My daughter also has Kidney problems. She has 3 cysts in left kidney, 2 in right. She also has Hypercalsaria (sp) (to much calcium in system, takes K-Citrate 3 times a day to even it out) and about a month ago passed her first stone. Kera was always VERY health until Feb 1, 2003 and then WHAM! IC, Endo., Kidneys and IBS w/constibation. Out of no where. No family history of any. She has had terrible back pain for the last 6 weeks. Missed the last 6 weeks of school (but took finals and aced most of them).

I wish the doctors would come on this site and look at what you ICer's all have in common. Like the back pain, the endo., the IBSm, kidney problems. There seem to be a lot of links they don't look into.

[jessika03]

Hello everyone I am new here, Just wanted to say I have kidney stones on and off for years, these last months have been bad, I have been to the doc He just keeps sending me for test after test, my IVP and CT scan show numerous stones to many to count, I am in pain 85% of the time but he trys to tell me that I should have no pain and then looks at me like I am just making all of this up. Finally one day I snapped, I said who are to tell me I have no Pain I know my body and It is saying I am in PAIN!!! he was blown away,
He says that the stones are stuck in my kidney and what I have is a Diease? My right Kidney is enlarged But I should by no means have pain.Everything he said to me yesterday went in one ear and out the other because soon as he said diease I was in shock. so I guess I will have to wait till I get back to find out anything.
Has anyone here ever had kidney stones in the Kidney that hurt even though they were not moving

[Paula A]

I have had a Kidney stone and I pray that I don't get another one. I also have pain in my kidney's.

:) :) :) :)

Paula

[sedavis]

I am 65 and have stones since my early 20's. I also have a cyst on my right kidney, which I just had drained, and my right kidney only has 10 percent function. My urether from my kidney to my bladder is not attached so I just sort of spray urine everywhere. I was diagnosed with IC 4 years ago so I definitely feel there is a connection. The only real pain I've had has been from the stones and IC and just found about all the other urinary tract problems when looking for an answer to my IC..Sue

[Romans8:28]

Me too! I had my first stone removed at 19 and am 41, both my kidneys are full of them! Jessika your story sounds exaclty like mine, we should pm,,
I have MSK and many stones in my kidenys. For the past 3 years I had many test etc. that show no stones in ureters but LOTS of pain. I have also had a lot of Dr appoinments like the one you described. the doctor just sounds like the teacher in the peanuts cartoon, (wha wha wha wha.. just didn't hear him)

out of desperation he tried antibiotics, long term this has brought great relief but only temporary.., now from my testing and researching we believe that I have a biofilm infection in my stones causing all my kidney pain and I believe irritating my IC. Still trying to prove it! found a website on MSk (Medullary Sponge Kidney) and they were all in pain too, but it has since disappeared!

My right kidney is also larger.., no "big" deal he said it was caused through having children. Most likely I had some obstruction then!
I would really like to talk with you more!

Shelly

[jessika03]

I am so glad I am not alone here, These Kidney stones of mine are putting Such a dent in my life right now, I Have a three yr old little boy and it is so hard for me to keep up with him and I am only 24 yrs old And I just keep thinking to myself How much worse can this really get, My Doc said he does not want to operate because all my stones are passable, well good for him but not me, I hate playing this wait and see game, My husband works ALOT he helps out when he can I have not one to help me with my little boy when I am sick and it is so Hard. Like I said When I tell the Doc I am in Pain he looks at me like I am crazy and a drug seeker, I hate taking any type of medicine But at this point I can not help it. I really am thinking about switching doc so I can find someone who understands that I am in pain alot.
When I went to see him it was like he was just reading a report he did not say anything I could understand He gave me copies but I dont know what all the crap means, the only thing I got from him was DIEASE thats it. I am so scared and confused at this point I just dont know what to do.
Ok I am rambling now sorry this is so long..
I would Love to talk with you too, ANYTIME ok?

[hollipop]

I have recently found out that I had 3 infections (from broth culture) and when I recently passed some stones and had them analysed, they broke them open and found the same bacteria. My URO believes without a doubt that my IC is caused by this. I'm on antibiotics, and I just had a clear CT scan a couple weeks ago, so she doesn't expect me to have anymore stones. PM me if you want to know more.

[Babs RN]

I have had so many of the dang things I have lost count. I have had lithotripsy and basket retrieval as well as the wait and see approach. Anyway you cut it OY VEY! :bonk: The suckers hurt. :cussing: I have hyperparathyroidism also which causes my calcium level to trend up.

Hugs,
Barb:smile tee

[Romans8:28]

Jessica I will pm you soon.., crazy day today! What disease do they say that you have?

Shelly

[jessika03]

See that is the Million dollar question, I do not know, he really did not explain everything all that well in tems I could understand So I am sitting here until my next appointment wondering what on earth is wrong with me. I know I suffer from chronic kidney stones but he didnt go much deeper in it but that. I have to go back In sept for a cysto so maybe he will tell me more then who knows, All i know is that I am in a pain still last week he said I should not be in any pain and did not give me any meds, So Now I am just suffering I swear I am just about at the end of the rope with docs I have given up all hope that I will ever get the help I need.

[Romans8:28]

Jessika,
you do have a right to your records. I would encourage you to get copies of all test etc. I often learn much more then they tell me! I also have chronic stones with the MSK, but there is no way to get them all out of my kidneys!
I understand, oh boy do understand being at ropes end in that pain and I am so sorry. a:grouphug: I will also try to pm later tonight with more information you maybe able to take to your doctor. I know my doctor had never run into a case like mine before and just didn't know what to do.
In the meantime, here are a few things I found that have helped some with the pain. Though I admit I now have to take pain meds.
Heating pad..., I also use those little heat patched under my clothes.
I also take advil migraine strength. it is not the best for your kidney's but I can't take the pain. I have to take this along with Nerveblend sp by Solaray or it irritates my bladder...,

I'll try to get you so info. so maybe he will get you some pain meds.!

hang in there!
Shelly

[shannonkc]

I found out a couple of weeks ago I have two small stones in my left kidney..I have never had any problems with ANYTHING until the last 6 months when all these IC symptoms started, and then I found out I had kidney stones.....it's nice to hear I am not the only one who KNOWS it is connected. Why don't dr's know this!!! I have a hydro on Fri to diagnos IC........we'll see
:(

[jessika03]

THe way I take they can not get the stones out of my kidneys either. How do I go about getting my records?? Do I just ask for them?

[KokoBean]

I was just diagnosed with IC this past June and strangely for the first time ever (and within a few weeks of my IC diagnosis) I was also diagnosed with kidney stones in both kidneys as well as cysts on both of my ovaries. How strange.

:confused:

[shannonkc]

I have two small stones in my left kidney that have been there for over 6 months. Lately I have been having really bad pain in my left kidney that comes and goes. The doc told me also that I should have no pain until they pass.....I almost feel congested inthe left side of my body, it's hard to explain. But I truly feel that the IC and the stones are connected. We'll never know, especially when dr.'s like to TELL us how we should feel based on a generic medical book.

[Romans8:28]

Here is a message board for people like me with MSK, these are people who live with a chronic stone disease. I posted here under Hi, I'm new, MSK Shelly and was amazed to find a number of MSK patients with IC and chronic infection.
http://groups.msn.com/MedullarySpongeKidney

Shelly

[weezer]

I too have the same problem - kidney "sand and gravel" which is such a pain on top of having IC!!! I have also had kidney stones and I would rather have twins, then go through that. I had never been told the name of the passing of sand and gravel, so thankyou Tara, as I will be bringing this up to my Uro. Twenty five years ago I had my right ovary removed, and hemorraged after the surgery. I was taken back into the operating room and had a catheter put into my kidney and into my bladder, that was left there for 3 weeks. The urologist that operated decided to leave the blood clot, which was on my right ureter. It took 1 year for the blood clot to dissapate, and I feel that is one of reasons that I have so much pain in that area - as the hematoma was dissapating it caused a kink in my ureter and of course over the years severe scar tissue. My uro feels this is a problem also and is in the process of deciding to put a shunt in the ureter to open it up. I learn something new every time I come to this network, which is so helpful. I don't know what I would do without this forum. Again, thankyou Tara for the info.
Weezer
British Columbia
Canada

[weezer]

I too have the same problem - kidney "sand and gravel" which is such a pain on top of having IC!!! I have also had kidney stones and I would rather have twins, then go through that. I had never been told the name of the passing of sand and gravel, so thankyou Tara, as I will be bringing this up to my Uro. Twenty five years ago I had my right ovary removed, and hemorraged after the surgery. I was taken back into the operating room and had a catheter put into my kidney and into my bladder, that was left there for 3 weeks. The urologist that operated decided to leave the blood clot, which was on my right ureter. It took 1 year for the blood clot to dissapate, and I feel that is one of reasons that I have so much pain in that area - as the hematoma was dissapating it caused a kink in my ureter and of course over the years severe scar tissue. My uro feels this is a problem also and is in the process of deciding to put a shunt in the ureter to open it up. I learn something new every time I come to this network, which is so helpful. I don't know what I would do without this forum. Again, thankyou Tara for the info.
Weezer
British Columbia
Canada

[Doublediamond]

I really don't think you need to get too upset with the "disease". I think from reading your posts, you have what I have.......medulary sponge kidney disease. It just means you produce stones excessively. I am on Urocit K 3 times a day and allopurinol 1 time a day to prevent more from forming. Does it work, don't know. I think since I had my first stone at 20 and now I'm 46 I would have to guess (lost count and don't really want to know how many) I've passed about 30 stones. Only been on the meds for 2 years. I've had lithotrypsy three times. The last time was about three months ago for a stone about the size of a pencil eraser! About 25 fragments came out.

What is facinating to me about this thread is everyone saying this is connected to IC. My ex-urologist looks at me crazy when I tell him my kidneys hurt. He says there is nothing coming down, you shouldn't be in pain. My ex-gyno says my IC shouldn't be causing me this much pain. My family doctor said he couldn't give me pain meds because they're addictive. My new gyno from today looked at me like I asked him for the moon when I asked for pain meds today. He said the problem with IC patients is that they get addicted to pain medications. I wish just one of these four doctors had the pain I feel each and every day from my kidneys and IC for 24 hours. I feel like no one understands how much it hurts!:bonk:

Thanks for saying what I've been feeling and no one will listen, the two are connected.

[weezer]

Every time that I have a hydradistention (which is every 3 months), my uro comes and see's me in the recovery room, and his first comment to me is how many stones he found either in the ureters or the bladder. So after reading all the posts re: stones & IC I am convinced there is a connection. I find it so amazing how one person can post one post and then there's 3 pages of posts with so many people having the same symptoms. There has to be a connection between IC and Kidney Stones or "gravel and sand." That's just my opinion, which doesn't mean much - but like I said before I certainly will be bringing this up to my urologist.
Weezer
British Columbia
Canada