Stone removal, more forming, growing quickly!

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TL:DR - I had uretroscopy for calcium oxalate stones (one was 10% struvite), the recovery was very painful. Ask for toradol anytime you are in the ER with massive kidney pain, it works better than the narcotics. If you ever have to take your stent out yourself, take a 3 ibuprofen 30 min in advance. My surgery was 4 weeks ago, and I am still having some pain as well as occasionally cloudy urine. My remaining stones have now doubled in size (4-8mm) Help!

I'm a stone former, I come from a family of stone formers, and I hate forming stones!

I've been battling with kidney stones off and on for the last 8 years. I am a 33 year old male and have passed several small-mid sized stones on my own over the last several years. Recently though I developed a stone that got stuck at my UPJ, then moved a bit, got stuck again, and ultimately ended up stuck at the bottom of my ureter. I had know the stones were there for a long time, but they had been content just sitting in my kidney until Oct 21st of this year. I went to the dr and was peeing a lot of blood (dark maroon urine) but had none of the classic stone pain symptoms. Im guessing when the stone broke free it caused me to bleed, but didnt fully block my ureter leaving me hydronephrosis free, but still in trouble. The stone ended up causing some severe pain, but finally after about 5 days settled into a spot in my ureter where it wasnt causing me issues. They did a CT scan and determined it was a 4mm stone and also noted I had a 5mm in the same kidney (left) and 2 4-. 5mm stones in the right kidney. They decided that since I was pain free, we would ride it out and see if it could pass on its own.

FFWD to Dec 4th and I end up in what at the time I thought was the worst pain of my life. I went into the clinic with classic kidney stone pain and peeing large amounts of blood. After a shot of toradol, god's miracle stone pain drug, they took me back and did a CT and determined the stone was now 6mm and causing inflamation, hydroureter, and hydronephrosis. They also noted the stones in the right side were 5mm. After a few hours and the Toradol shot the pain was gone and I was sent on my way to follow up with my urologist.

My urologist "reiewed" my ct scans and determined that it it couldnt possibly be the same stone, because stones only grow 1mm a year, and that i needed to try for 4 more weeks to continue to try and pass the stone. She came to this conclusion despite no new stones being noted in either kidney and none missing...Quite baffling, but she's the expert, so i trusted her.

I spent all of December miserable, constantly peeing blood. Not visible blood, but blood that a home dipstick urine analysis quantified as Large. Finally on Dec 2nd my time was up to pass the stone and the dr decided it was time to get the stone out.

I had a ureteroscopy with laser on my left kidney Jan 17th. The KUB(xray) prior to my surgery indicated that my stone was still 6mm and had moved lower. In addition to that stone the other stone in the left was holding steady at 5mm, but the right stones had now grown to 6mm.

The surgery went fine but the recovery process was unbelievably painful. I wake up well from anesthesia generally but my first memory waking up from this one was trying to force my way out of my bed with the thought of, if i could just get to the bathroom i would be so much better off. I had a stent placed and was sent home that night around 10pm (4pm surgery) with a stent in place. I have to warn you going pee at the hospital and that night at home are extraordinarily painful.I found the key was to sit on the toilet and lean away from my surgery side and take as deep a breath as i could as I started to pee. Obviously you dont want to push, but your body kinda takes over and while your bladder is contracting and sending urine not only out your penis but also back up into your kidney via the stent, you wonder if death isnt a better option.

Anyway the first night was hell, the second night as I learned to pee was better. The third night things were getting even better until i rolled over in bed and tried to adjust my shorts and accidentally pulled on the string of the catheter. I immediately lost control of my bladder and peed everywhere. TBH i was pretty relieved when I got to the bathroom and discovered it was pee though because the way it was coming out my mind just assumed it was blood.

At that point the catheter couldn't stay in. Mostly because i couldnt leave the toilet because urine was just free flowing and I had no ability to stop it. I tried calling all the after hours lines (it was midnight) ended up waiting 2 hours while sitting on the toilet and googling WTF i to do because no one would call me back, and decided i needed to remove the stent myself. I hopped in the shower, said a prayer, and slowly pulled the stent out myself. Between the stent and the string, it take awhile, its really long. I immediately felt relief and thought everything was over. Boy was I wrong.

45 minutes later I was on all 4's in a full on 10/10 pain. My kidney was in a spasm that it would not come out of. I kept blacking out from the pain and had to be taken to the ER. At the ER they gave me Hydromorphone and the pain went to a 7, then they gave me toradol and the pain was at 1 within 20 minutes. If you ever end up with severe back pain from the stone...ask for toradol. They ran blood work and my kidneys were functioning well, they did a urine culture and found no infection, there was obviously blood and oxalate crystals, but nothing else that they didnt expect.

All of that happened with little info from the dr. So hopefully to anyone that has this surgery, the above helps.

Now for current day where I need your help. It has been 4 weeks since my surgery and I am still experiencing intermittent kidney pain. Not overwhelming and no where near what you feel as you are passing a stone. Just...uncomfortable stinging. I also have about once a day where I pee and it is completely cloudy and the PH is above an 8 according to the dipsticks. Every other time I pee the color is what you would expect and the PH bounces between a 5 and 6. I recently had 2 urine cultures and everything came back clean and normal so no one believes the cloudiness is related to an infection. I have no fever and no pain when urinating. My stone type was calcium oxalate, but one of the removed stones contained 10% struvite. I have had a follow up ultrasound that indicates my left kidney is now stone free (he removed both), but that my right kidney stones are now 7-8mm respectively.

I know there is a margin of error associated with different dr's reading the stone sizes and a margin of error associated with CT scan vs xray vs ultrasound. However for the stones to have gone from 4mm to 8mm in the course of 5 months seems well beyond the margin of error.

Anyone else out there experienced this rate of stone growth? Anyone still having pain 4 weeks post surgery? Anyone with once a day cloudy urine but not pain when urinating, no fever, and a clean Urine analysis?

Would love some help. The kidney stone specialist cant see me until March 6th and I've lost faith in in my current urologist office. Thats a story for another time though.

Thanks for sticking with me if you made it this far!

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  • Posted

    As a female, I can't completely relate, but I have had three separate bouts with stones over the last two years. And they can definitely grow much more quickly than 1mm a year. I passed six 4mm this past may. By October I was having a uretorscopy to remove a trapped 8mm from my kidney. It wasn't on the CT scan five months earlier. Also, when I was diagnosed with my first stone, it was 8mm. By the time I got it removed a few weeks later, it was over 1cm. My urologist says that as long as there is sediment sitting in your kidney, there is something for the calcium oxylate to bind to. I don't know how they get their measurements though or how accurate they are. I just know I had a large stone in five months time that wasn't there before. As far as cloudy urine...not sure if it's something to worry about or not. Mine often depends on what I'm drinking. Maybe it's stone sediment flushing out? I assume you are fully aware that as kidney stoners, we need to drink way more water than we could ever want. I go back to the urologist at the end of this month...so will then see if I grew another big one in 4 months. I also have sharp pains and twinges and am on edge that it's another stone. Also, you can have a non-obstructive stone in your kidneys and still experience mild to severe pain. Some urologists don't believe it, but there are enough of us on here to confirm otherwise.

    Thanks for the torudal suggestion. At the ER they started with morphine and I couldn't tell a difference. Got a little better when they gave me hydrocodone...but I was pain-free when they gave me dilaudid.

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  • Posted

    Such a in depth description of a painfull experience. In some cases diet helps has your doctor discussed this with you. I hope you can finally have some resolve and solution that gives you peace. Take care! 
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  • Posted

    Here is my story.

    January 2017 diagnosed with a large kidney stone (maybe more than 1) to which the urologist said "Good Lord, I see what the problem is." When I said to the urologist that I thought I might have passed it he said, "You've got about as much chance of passing that as I have of having a baby."  OK I thought, at least we all know where we are!!

    The urologist referred me to someone else.

    March 2017 I saw this other urologist who agreed to remove the stone by keyhole surgery. This was a bit complicated as i have horseshoe kidneys (they are joined together) which made the stone difficult to access. However he did agree to do it.

    June 2017  This urologist has changed his mind and referred me to someone else in Cheltenham

    Saw urologist in Cheltenham, yes you've guessed right he referred me to someone in Bristol!!

    October 2017 saw urologist in Bristol and he agreed to operate.

    4th December 2017  HURRAY  Operation date at Bristol.

    I had a stent and a catheter in. Was in hospital for a week. Catheter in for 3 or 4 days Stent in for a week.

    January 2018  Still a bit of pain in right flank area got another urinary tract infection, GP thinks stones have come back!!!

    Fortunately I have an appointment at Bristol with the consultant who operated on 2nd March.

    Still pain but certainly not as bad as it was before he operated.

    The saga continues

    Sarah 

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  • Posted

    Feeling grotty today.  Pain again in right  kidney area . The local GP surgery are not very good. You cannot get an appointment with a doctor without going through the practice nurse. If she decides you don't need to see a doctor you do not get an appointment. We are helping you by saving  you coming down her they say. I do not want to be saved from coming down there all i want is to see a doctor we say.

    I think the kidney stone may be forming again, cannot go through all this again, sorry but really  not sure what I need to do here.

    Any bright ideas much appreciated.

    Thanks for listening to me moaning.

    Sarah

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