Kidney Stone Saga

[OldBroad]

I had lithotripsy on two 1 cm stones on Tuesday. The only symptoms I had before the procedure were a couple of episodes of moderate flank pain and consistent bloody urine after exercise. I was certainly lucky in that many people get horrible pain from kidney stones. The urologist said the stones had to go, so I went to the hospital on Tuesday for the procedure.

Before the procedure, I asked the urologist about what I read on the reputable kidney stone websites: University of Chicago Kidney Stone Information and KidneyStoners.org. Specifically I asked about analyzing the stones (by straining my pee after the lithotripsy) and getting a 24-hour urine collection analysis. He said he didn't usually bother with those analyses for a first episode of kidney stones. He also said that since the stones showed up so clearly on x-rays, it was definitely calcium oxalate stones and I should modify my diet based on that assumption. He emphasized that mostly I should just drink lots more water. According the the above websites, avoiding oxalates is also important. Being a tea-drinker, that makes me sad (black tea has lots of oxalate). Coffee is better and I also like coffee, so I guess I'll be OK on that count.

At the moment I'm feeling worse than before the procedure, mostly because of the stent that was placed in my ureter to keep it from swelling shut around any stone fragments as they pass. It feels a little like I always need to pee. There was also a mix-up regarding the meds I got as I left the hospital. They gave me Percocet (yay!) and Ditropan (an antispasmodic). I thought I was getting an analgesic for the urinary tract called pyridium, but that wasn't initially prescribed though I got paperwork from the recovery/discharge nurse about it. I got that straightened out late yesterday and the pyridium seems to be helping a lot, though it is turning my pee a lurid shade of orange.

I'd love to hear from anyone who has helpful information about preventing future kidney stone formation in a DS patient. The urologist prescribed me a supplement call Theralith XR. I took one pill and I think it gave me watery diarrhea, so I'll be looking for something else.

 

[DianaCox]

The "stoners" will be stopping by shortly. In the meantime, for future reference, pyridium is available OTC - Azo is a brand I've bought (for UTI relief, not stones).

 

[Clematis]

Sorry about the stones. SOOO not fun.

I'm a fellow stoner.

I'm surprised your doc did lithotripsy for 1cm stones. Because lithotripsy can do damage of its own to the kidneys and ureters (and other abdominal tissues from the vibrations) and actually cause more stones to form, the three urologists and nephrologist I've seen really wants them to pass them on their own and stats show most stones under 5cm do pass on their own. That said, when I'm screaming in excruciating pain, I would turn over my 401K to a doc if s/he would just go get the damn thing. I've had 9 stones and only the last one -- a 5cm -- got stuck between the ureter and the bladder. After 3 weeks they finally did lithotripsy. I was not given any pain meds post-op, nor did I need any. And I had the stent, too, which I was told to pull out the next day via the string they taped to my pubis. I assumed a stent was a little stubby thing so was aghast when I pulled out what looked like a 10" piece of green electrical wire. Anyway, you should not be in pain from the removal of 1cm stones. If it were me, I'd call his office if pain isn't gone by noon tomorrow (b/c of weekend).

Flavoxate is the prescription drug that calms the bladder spasms that occur with cystitis and with some kidney stones. (Only 2 stones have given me spasms.) It does not turn pee orange (FYI that orange can permanently stain your underwear if you dribble).

Look at my posts here on stones. I recently posted some stuff to a thread started by marquis mark.

Fat malabsorption can cause kidney stones since calcium, which usually binds to oxalates so it can pass safely out in poop, prefers to bind to fat. (And we have all that unabsorbed fat in our DS bowels.) That leaves oxalates in the intestine where they are absorbed into the blood stream and end up in the kidneys. The oxalate diet sucks. I really struggle with it and feel sorry for myself that I went through the DS and still have to diet and count something (oxalates, not calories).

Drink enough fluids to pee near clear 2200 ml of urine in 24 hours. I was taking in the 2.5 liters the docs say will produce that, however I only pee half that so I must sweat a lot in exercise class. Also, drink a big glass of water before bed so you're compelled to get up in the middle of the night to pee, then drink another glass of water. (It is thought that stones form when the urine pools in idle kidneys at night.)

Take in potassium citrate. U of Chicago site has several web pages on that and how to get it from beverages. Crystal Light Lemonade is a good source -- 3x higher than lemon juice lemonade. (As for Therlift, don't you already take magnesium and B6?)

Have you done 24 Hour Urine test to measure oxalates, citrates, sodium, etc?

Good luck with all this. Hope you don't get more!

 

[DianaCox]

@Clematis - I think you have your units confused. A 5 cm stone would be over TWO INCHES across. I think your doctors said 5 milimeters (mm) which is ONE TENTH the length of a 5 cm stone. The interior diameter of a normal ureter is 3 mm (https://en.wikipedia.org/wiki/Ureter). A 1 cm stone is 10 mm - there is no f'ing way that is going down a 3 mm tube.

 

[hilary1617]

@OldBroad and @Clematis, I have no helpful information, but offer my sympathy. The stone experience sounds awful. Hugs to you both for having endured!

 

[Clematis]

Haha YES mm not cm. It's been a long day.

 

[k9ophile]

My last stone was the size of a nickel and shaped liked an arrow head. I also had a lot of bloody urine, but no pain or infection. I had to have it blasted twice. For some reason it wrecked havoc on my appetite (not that as a DS'er I have a huge one anyway) and a lot of nausea/retching . I lost down to 144 lbs. and wore a size 12 pants. I have put some weight back on and feel much better.

I have consistently low potassium so once I became a stoner, I switched from potassium chloride to potassium citrate to help prevent further stones. I take a liquid that tastes horrid, but I'd rather drink it then form stones. I have no doubt I'll have more stones because I don't follow a low oxalate diet and need to drink more fluids.

You have my sympathy.

 

[bearmom]

Another stone former here (mine started years before my DS, but know the DS didn't help). Sorry to welcome you to our crappy club.

I'm really surprised your dr does not want to test your stone. Sure, most are calcium / oxalate, but not all, and they aren't treated the same way. So now if you have symptoms of another, they won't actually know what you can or can't be treated with as far as drugs because they won't know the type.

If it were me, there is NO WAY I'd let those blasted bits go down the toilet. I'd strain all pee, and collect and SAVE THEM. It's fine to rinse and dry them, but don't store them in water. Then, if heaven forbid you have symptoms of another stone, they will want to know what they are made of then, and can be tested after years of storing. They then may be able to prescribe Urocit-K or a prescription probiotic thought to help them, if they know what kind. If they have none to test, you'll be right where you started and unable to attempt any rx's.

 

[DianaCox]

What Bearmom said - sieve the pee and save the stones! (Read it in your head in Dan Aykroyd doing Julia Child's voice http://www.nbc.com/saturday-night-live/video/the-french-chef/n8667?snl=1)

 

[southernlady]

I realize most of you who are stoner's experience blood in your urine FROM the stones but anyone who has blood in their urine needs to be careful. I have a very good friend who is dealing with bladder cancer and one of the signs is blood in the urine.

 

[Clematis]

Yeah really weird he didn't test the stone. When I had my lithotripsy the doc was able to get part of the stone for testing -- although I've had several tested before so didn't think it was necessary. I have two 3mm stones in labeled baggies should they ever want to test them too but its obvious they're the same "Grape Nuts cereal" calcium oxalate stones.

I have a small handled kitchen sieve I keep in a baggie to use when kidney stones are acting up. It was part of the gallon ziplock "kidney stone kit" with percocet, flomax (to dilate ureters), flavoxate (in case of cystitis-like spasms) I made and keep stocked in my bathroom. I take it whenever I travel, even to Europe. The sieve is small enough to fit in my purse.

BTW I had blood in my urine for 2 weeks after the lithotripsy. Since then (lithotripsy was November) I have had bloody urine after aerobics classes a couple of times, the last being on Wednesday, but I still have a stone in right kidney. Blood in urine after exercise is also a symptom of dehydration.

 

[OldBroad]

I just called the urologist's office and asked them to tell the doctor that I want the stone tested anyway. I haven't felt anything passing through my urethra, so I'm guessing the stone was crushed to sand. I wonder if the sieve can catch that or whether I'll need to use cheesecloth or a coffee filter in the sieve to catch the sand.

I feel OK if I'm sitting still. As soon as I get up and move around, I have the sensation that I need to pee. I guess that's the end of the stent jostling around in my bladder. This is not exactly an encouragement for me to stay active over the next couple of weeks (and the weather has mostly been unhelpful in that department as well). I'll promise myself to get extra-active after the stent comes out.

 

[DianaCox]

Cheesecloth, unless you have a really big sieve and really big coffee filter!

Somewhere, I have an activity tracker, but I'd have to figure out how to activate it. And at the moment, it probably wouldn't have much to register - though I SHOULD be unpacking. I'm mostly work-avoiding at the moment.

 

[k9ophile]

I realize most of you who are stoner's experience blood in your urine FROM the stones but anyone who has blood in their urine needs to be careful. I have a very good friend who is dealing with bladder cancer and one of the signs is blood in the urine.

Good idea! Since I had no pain and bloody pee, my doc did a complete bladder cancer work-up. I had a cystoscopy and CT scan. Maybe something else, but all tests were painless.

 

[aaa]

Sorry to hear what's been going on with the stones.