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09-14-2011, 04:47 AM   #1
MelissaM24
 
Join Date: Sep 2011
Location: California
Kidney Stones

Does anyone else here suffer from chronic kidney stones? I was recently hospitalized for the 5th time, and had to have surgery to remove a stone that was stuck in my ureter (the tube from the kidney to the bladder). It was a nightmare. Now I have a big one on the right side and a medium-size one on the left as well as a couple smaller ones on the left. The ones on the left are coming down and causing extreme pain. If they don't pass on their own, I'll have to go back into the hospital to get them shockwaved (broken up into smaller particles to pass).

Long story short, my urologist is just not being very active in my care. He happens to be a good dr. and his children have been taught by my dad in a small private school, so they know each other pretty well. But he does not communicate well and does not "jump on the gun" with all of the issues I'm having! It's a very complicated background because I have the crohn's disease that was in a flare up, the kidney stones, and a bulging disc/arthritis in my back that I have to take strong pain meds for (that barely work because of the tolerance my body has built up).

Anyway, I just wanted to know if anyone else has had kidney stones along with their crohn's disease and what they do to prevent them. Thanks!
09-14-2011, 07:22 AM   #2
Lisa
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Melissa - YES - I have had kidney stones at least twice - first time I was in my 20's.

My urologist recommends drinking REAL lemonade to help keep stones at bay, I also try to drink cranberry juice as that helps too.

A big thing is to have routine checks for any formin stones. At first I was getting a check done every 6 months (after my last bout of stones) and now get one done yearly - alternating between x-rays and ultrasound to look for anything new.
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
09-14-2011, 08:08 AM   #3
MelissaM24
 
Join Date: Sep 2011
Location: California
My doctor better start checking regularly after I get these out! Unfortunately, they don't always show up on x-ray or ultrasound, but I've had too many ct scans so they don't like to do those... ugh... looks like I might just have to though.... thanks for replying! I've passed and/or had removed about 15 or so now.
09-14-2011, 08:30 AM   #4
Crohn's 35
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Join Date: Oct 2009
You either have Uric acid or calcium oxolate, which are mine... have avoid the type of foods for which ever you have and there are so many foods to avoid... I have had 4 kidney stones, not fun.
09-14-2011, 07:40 PM   #5
Regular Joe
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Location: Cleveland, Ohio
Yes lord!

I've had some pretty nasty bouts with those rascals. Mine were calcium oxolate. One was 7mm! Kidney stones definitely occur in Crohn's patients more often. Here's a trick for you after you pass them or get them pulverized...Drink a 16oz glass of water right before you go to sleep, which is when you start drying up until morning. If you wake up to pee in the middle of the night, then drink another half glass of water. Start now and do this forevermore. This keeps your waste minerals from crystalizing during your dry hours of the day/night, which is essentially what a kidney stone is all about.
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09-15-2011, 06:54 AM   #6
JJ_777
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I get all the symptoms of kidney stones particularly gross hematuria and severe pain... But they can never find the stones... Been hospitalized once for 4 days and been to The emergency ward a million times but they cant explain what is going on... Off for another ultrasound tomorrow... On oxycodone tonight for the pain (there is protein floating around in my pee) and I'm on the waiting list for a cystocospy... I'm gonna post another thread with all of the details as I would be interested to see if anyone else had had this problem.... It SUCKS
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09-15-2011, 07:08 AM   #7
MelissaM24
 
Join Date: Sep 2011
Location: California
Ugh JJ so sorry... it seems like doctors are so incompetent when it comes to crohn's patients and kidney stones.. have they done a ct scan on you? Mine won't show up on normal x-rays or ultrasounds. I hope they find that's going on with you... I hate being in the hospital because they treat me like i'm a drug addict just because I need strong pain meds when passing a freakin stone and having surgery to remove it... it's cuz I've built up tolerance since I'm on pain meds for back problems to. Let me know where you post your info.
09-16-2011, 07:46 AM   #8
JJ_777
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Hey Melissa!! Yeah it sucks!! And Dr's have no clue as to what is going on!!! Ultrasound today found nothing as usual!!! yup had 3 CT scans & xrays... But nothing shows!!! Will post a link here when I create a new thread!!! Sounds like u have been through hell too :-( hopefully we will all get sorted soon!!!
10-04-2011, 08:15 PM   #9
TimsMom
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Join Date: Oct 2011
Location: Minnesota
My son got his first kidney stone 2 weeks after his crohn's diagnosis at age 12. He just turned 18 and has passed over 50 since then. One had to be removed surgically. He just keeps on making them! So yes, I have heard of chronic kidney stones with crohn's...LOL.

As far as prevention, the nephrologist had my son take 2 tums with each meal to provide something for the oxalate to bind to and leave the intestines. Didn't work in his case. Now he is on a diuretic to prevent them but that isn't working either. So we keep ativan in the cupboard for every couple of months when he passes another one.
10-05-2011, 04:50 PM   #10
MelissaM24
 
Join Date: Sep 2011
Location: California
Ugh TimsMom, that is not fun... I can relate. I just had one of mys tones shock-waved and it worked out wonderfully! Finally, something that broke up a kidney stone and not too much pain! Has your son tried potassium citrate? I tried it in the beginning, but it irritated my gut too much so I had to stop. Now that I have so many stones, I decided to start on Prilosec to help my stomach not get irritated and take the potassium citrate, starting in small doses. I am taking half of the recommended dose, and hopefully I can get up to the full dose because it's supposed to reduce calcium oxalate stones by up to 80%.
10-05-2011, 09:41 PM   #11
TimsMom
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Ugh TimsMom, that is not fun... I can relate. I just had one of mys tones shock-waved and it worked out wonderfully! Finally, something that broke up a kidney stone and not too much pain! Has your son tried potassium citrate? I tried it in the beginning, but it irritated my gut too much so I had to stop. Now that I have so many stones, I decided to start on Prilosec to help my stomach not get irritated and take the potassium citrate, starting in small doses. I am taking half of the recommended dose, and hopefully I can get up to the full dose because it's supposed to reduce calcium oxalate stones by up to 80%.
He has tried that in the past but it didn't do anything for him. My son has had 3 types of stones so if it did help the calcium ones, then the other ones still continued; however, when he was on it, he still had the calcium stones. I really wish we could find a pill to work for him.
10-06-2011, 03:27 AM   #12
MelissaM24
 
Join Date: Sep 2011
Location: California
I wish there was a pill that would work for him too... sometimes the answers just aren't easy to find with health, it's not fun! I hate that Prednisone is the only drug that keeps me out of the hospital when my crohn's is flaring... and I'm hoping that the potassium citrate will help me, I really don't know yet if it is or not since I just had the surgery and still have some on the left side. I will definitely pray for your son that something will help him.
10-21-2011, 01:46 PM   #13
glory_h
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I just got my first kidney stone in January. Until then I had no idea they were associated with Crohn's - only when I started doing research on my own did I find that out. My brother, father, grandfather, cousins, have all had kidney stones, too, but they don't have Crohn's.

Makes you wonder.
12-20-2013, 02:41 AM   #14
MelissaM24
 
Join Date: Sep 2011
Location: California
Oh man... SO many obstacles since I wrote that last post... surgeries for stuck kidney stones, and the last one was in June of 2013, I was in the hospital for 9 days for what was supposed to be a 1 day shockwave surgery. They ended up finding a HUGE stone and breaking it up, and I had an epidural along with pain meds for pain control, that still didn't control the pain enough.... well, that stone ended up breaking into TONS of smaller stones that were all passing and caused so much pain that I had to get a second epidural put in and couldn't feel my legs or move around that whole time, and was in horrible pain even with all of that still because they were stopping it thinking I was going home, and I ended up having to have a SECOND surgery with my Dr. going up there and removing all of the broken up pieces. The anesthesiologist said it was like "mining for gold" with how many stones they pulled out. I had the most pain I have ever had in my life. Won't go into the details but the two surgeries along with the catheter and all of these stones being stuck, and then the pain of having 3 separate epidurals placed in my back for extended periods of time.... at one point we couldn't control the pain no matter how many drugs they gave me and I told them I didn't want to live anymore. I have never said that in my life. Luckily I have an amazing husband, parents, and God who love me and got me through it all. I am still creating stones but am trying to get back on trying Potassium Citrate, I also take Allopurinol for the Uric Acid type stones.
03-02-2014, 08:51 PM   #15
Justin1982
 
Join Date: Dec 2013
Oh man... SO many obstacles since I wrote that last post... surgeries for stuck kidney stones, and the last one was in June of 2013, I was in the hospital for 9 days for what was supposed to be a 1 day shockwave surgery. They ended up finding a HUGE stone and breaking it up, and I had an epidural along with pain meds for pain control, that still didn't control the pain enough.... well, that stone ended up breaking into TONS of smaller stones that were all passing and caused so much pain that I had to get a second epidural put in and couldn't feel my legs or move around that whole time, and was in horrible pain even with all of that still because they were stopping it thinking I was going home, and I ended up having to have a SECOND surgery with my Dr. going up there and removing all of the broken up pieces. The anesthesiologist said it was like "mining for gold" with how many stones they pulled out. I had the most pain I have ever had in my life. Won't go into the details but the two surgeries along with the catheter and all of these stones being stuck, and then the pain of having 3 separate epidurals placed in my back for extended periods of time.... at one point we couldn't control the pain no matter how many drugs they gave me and I told them I didn't want to live anymore. I have never said that in my life. Luckily I have an amazing husband, parents, and God who love me and got me through it all. I am still creating stones but am trying to get back on trying Potassium Citrate, I also take Allopurinol for the Uric Acid type stones.

Old thread but I wanted to post. Been through Around 6 or 7 surgeries (ESWL) in the last 10 months. My first surgery was Laser Lithotripsy in 2005. My left kidney started out with probably 20-30 stones from 6mm to 1.2CM. I sit here now awaiting surgery tomorrow for yet MORE STONES. So many, doctor has to do them in stages.

My last surgery, I ended up in the ER twice. Catheter after Urinary Retention. Two days later, spent 2 days in ER and required a stent. Now I need another ESWL.

All my stones are Calcium Oxalate. Drs told me welcome to Crohn's disease. Imagine had I gotten a proper diagnosis when I started complaining 15-20 years ago, I wouldn't be so bad off. Now, I'm a train wreck.

I'm on a first name basis with Emergency Rooms, the Hospital, and Doctors. When I ended up in the ER for stent, they the staff said what are you doing back here by name... Sigh.
03-03-2014, 09:51 AM   #16
mdd
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Join Date: Nov 2013
Location: Monongahela, Pennsylvania

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Hi! Yes I 'v had and have kidney stones, I usually get them smashed. if they are to big. If not I drink a lot of water. We still do not know what they are made of. they say its important. have them for 25 years, with the crohns, Do you like pure lemon juice ? drink one 8oz bottle a day my urologist told me it would reduce stones by 50% I ask because I did not want more medication. I just sip it though out the day. my doctor is dr rach Let me what you think!
03-03-2014, 11:32 AM   #17
alev
 
Join Date: Jan 2012
I had one kidney stone in 2009 and -knock on wood- haven't had one since. The kidney doc gave me some medications to take to prevent the stones, but the meds made me sick so I stopped them. The general consensus is that the stone was caused by Prednisone and I've been fine since I stopped it and all kidney related labs returned to normal. The kidney doc still monitors me yearly tho because the prednisone messed up my bones.

I know from the one I had it wasn't pleasant at all, so hope you get it resolved and don't have any more stones!
03-03-2014, 03:35 PM   #18
Justin1982
 
Join Date: Dec 2013
Composition: CALCIUM OXALATE MONOHYDRATE - 60%
CALCIUM OXALATE DIHYDRATE - 30%
MINOR COMPONENTS - 10%

Mine are calcium Oxalate Melissa. Dr said crohns is causing. Drink plenty of water. In my case, said til crohns is managed ill keep making. Lemon won't helo according to nephrologist or urologist with me. Crohns is my issue.
04-10-2014, 10:37 AM   #19
pink&green
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Hubby just got a call from his GI that ct-scan showed kidney stone on left side and inflamation on right side. He has never had a Kidney Stone before. They are referring him to a Urologist.
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Hubby Diagnosed 12/15/90
1/3 colon removed
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2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
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