02-24-2015, 04:08 PM   #1
shamrock15
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Kidney Stones

Well, I am getting all too familiar with this wonderful complication of crohn's. Has anyone else here had a whole lot of experience with them? What do you do to slow down development of them? I can't say that I particularly enjoy the hospital visits (two in the last 8 months now), and I would hazard a guess that the chance of a serious event goes up with each one that I have. I would appreciate anyone's feedback on this - thanks!
02-24-2015, 08:09 PM   #2
firemama
 
Join Date: Nov 2014
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Some, but not much, experience. My DD had one a week after being diagnosed with Crohn's. definitely increase fluid intake. My DD at 45 lbs drinks 50 oz/ day. She is also being seen by kidney stone specialist who has her on low salt diet as well as oral potassium. Have you had a 24 hr urine collection done?
02-24-2015, 08:20 PM   #3
Robrich
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I had one most painful thing I ever experienced next to my resection anyway
Sodas are a big big no no.
I take an herbal tincture called Chanca piedra, stone breaker, haven't had any since
Urologist said next time before going to the er take ibuprofen and jump up and down supposed to release the grip on the stone.
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02-24-2015, 09:53 PM   #4
shamrock15
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fire mama - last urine collection was after my first resection many many moons ago! It was a B12 test. I am supposed to be doing a follow up with a urologist though, so I will see what he/she thinks.

robrich - I don't drink too much soda anyways, so that isn't a big loss. I have watched my fluid intake for years, and have so far reduced my red meat consumption and switched to lemonade as my hydration - both steps that are supposed to help. I don't tend to use much salt, but I guess I will be looking to cut down some more.

Thanks for the ideas so far, keep 'em coming!
02-24-2015, 10:30 PM   #5
my little penguin
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Have the stone analyzed the type of stone can help you figure out what to do
Calcium oxylate is most common so avoiding high oxylate foods helps
Crystal light or other packet drinks that have additives to keep the powder crystals from sticking together is suppose to be helpful
Lots of water till urine is completely clear like water
And lemonade

That's all I got
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02-24-2015, 11:34 PM   #6
Carrie
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Have had those things twice...once when I was in high school (2000 I think), and again when I was a sophomore in college (2002). Luckily, I've avoided them since--they are horrible! I'd put them right up there with, if not past, small bowel obstruction pain! Both times I had to have mine broken down with some sort of ultrasonic waves.

I can't think of anything specifically that helps me with recurrence. I don't eat a load of red meat, don't eat/drink much dairy, try to drink a lot of water (and lots of coffee), and hope for the best.
02-25-2015, 06:26 PM   #7
mseve
 
Join Date: Aug 2014
I had a large one that wouldn't pass so I had lythotripsy to get rid of it. I was always badly dehydrated, so now I drink a lot of water and tea.
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02-25-2015, 09:12 PM   #8
D Bergy
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I would get regular vitamin D tests and supplement if needed. I also would take magnesium malate, or another good Mg supplement. Vitamin K 2 lastly.

All three of these help to keep calcium going where it is supposed to, instead of accumulating where it shouldn't.

Dan
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02-26-2015, 02:46 PM   #9
shamrock15
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I have actually started taking Mg lately, more for sleep though, and have taken fairly regular Vitamin D. Hoping this stone is going to pass - a couple rough nights and I don't think my stomach is too thrilled with the anti-inflammatories. Fortunately, it feels like the stone is out of the ureter and possibly in the bladder right now. Maybe I will get a little break from the pain meds. It's really uncomfortable to get the bowels backed up again. Off to remicade today, so maybe that will help dilate things a little.
02-26-2015, 05:03 PM   #10
mom2twogr8tkids
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Seems like every time I turn around I have kidney stones also. Even if it's not bothering me, I usually show one sitting there when I get CT's. It's common though, especially for people who have had resections.
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02-26-2015, 07:18 PM   #11
shamrock15
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I have a feeling that they are more common than I think. All those little "stiff muscles in the back" that disappear quickly may be small stones moving through. At least mine seem to feel that way when they start.
02-26-2015, 07:22 PM   #12
shamrock15
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I just looked at medicinenet.com, and it indicates high vitamin d can be a contributor. That might be a possibility in my case as the stones came when I was supplementing.
02-26-2015, 07:29 PM   #13
shamrock15
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Just found out chocolate can be a contributor as well - that one is gonna hurt!
02-26-2015, 08:47 PM   #14
mom2twogr8tkids
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Vitamin D is good for Crohn's so it's like a catch 22. Basically we have to pick which battle we want to face :/
03-26-2019, 12:23 AM   #15
mseve
 
Join Date: Aug 2014
My reoccuring kidney stone problem turned out to be related to being very Vitamin D deficient.

Vit D affects how much parathyroid hormone is released which affects how much calcium is pulled from your bones and put into blood stream. (and into kidneys, hence kidney stones)

So, if you have this problem, it is good to have your Vit D and PTH checked. My PCP sent me to an endocrinologist to solve it.
03-27-2019, 04:11 PM   #16
shamrock15
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Well, since this has come active again, here's an update. I had a huge one removed from my left kidney last year - a 2 cm staghorn stone. It left a small fragment that I still need to have removed. I have seriously reduced, almost eliminated chocolate, reduced meat consumption, taking calcium and some lemon juice multiple times daily. I have reduced my oxalate by almost 50% as a result, and there was no other formation when last scanned.

I will always be susceptible - bowel removal means that I absorb less water than I should and drinking more only causes flushing. Apparently us crohnies always absorb more oxalate than normal. Hopefully at least I will keep things more controllable.
03-30-2019, 11:27 PM   #17
Mountaineer01
 
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I've been there 7 times. The last gastroenterologist I went to said there was no relation between the stones and my Crohn's. Whatever. My current gastroenterologist has me seeing a urologist every 6 months. So far, I've been clear for about a year and a half.
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