A man’s perspective on being an extreme stone former.

Jerry CepicanSomething I have noticed over the last several years while reading up on kidney stone formation, living with stones, and generally how to prevent stones is: almost everything is written by women. I find this a little odd as typically men are more likely to experience at least one stone in their life. Possibly it’s because men don’t like sharing how they feel.  Am I stereotyping here? Maybe, but I’m speaking from personal experience with not wanting to share my own thoughts and feelings. I am writing this to share with you my perspective on life and how I deal with the massive numbers of stones I pass; in the hopes that I will be able to help at least one person stay “sane” from this disease.

A little history on me: I’m a 35 year old male, husband for over 15 years and I have one teenage daughter (my girls are my angels when it comes to helping me keep my sanity).  The first time I remember having stone pain was when I was 9 years old. My family always thought I would be getting the start of a bladder infection and put me on a cranberry juice diet. When I was 16 years old I passed my first sizable stone, and was able to add 2+2 together and figure out what had been going on most of my life. From age 9 -30 I averaged one or two stones a year. Once I hit 30 something changed. Things got worse and worse until I plateaued out at an average of 130 stones a year. Approximately 100 stones are 4mm or less, leaving the other 30 to be 5mm or larger. I have passed up to 8mm stones, all of them naturally. I have never had any type of procedure, if there’s one thing I’m good at, passing stones is apparently it!

When you break down that math, that’s something like a 3 day average for 4mm or less and a 12 day average for 5mm or larger. That is a lot of stones! Needless to say, there isn’t a day that goes by that I’m not in some type of pain, thinking about stones or on some type of medication. To help manage my stone formation I drink 3-4 liters of water daily, and have tried a combination of preventative medications that to date have had no effect.

Other than the horrible issues with stones I’m a perfectly healthy man nearing his middle aged years. I maintain a full time job which I find rewarding, I find time to go fishing both with my family and friends. I make the time for my girls. I think that is the key to handling life as I know it. Making time for the small things. Without taking time to enjoy life it would be all too easy to fall into the trap of feeling sorry for myself, over medicating myself and generally going into a downward spiral.

I have seen various health professionals over the years.  It has taken me a good 15 years to find the right primary care doctor and urologist.  I have tried all of the diets, to no avail.  I have tried a diuretic, and ended up being allergic to it.  I drink 3 + liters of water a day (sometimes up to 5) which I think is a key.  This has helped me from forming as many large stones. Currently I am trying potassium citrate to see if that does anything for me. It will be quite some time before that starts showing any effects. The bottom line is I’m an anomaly, and there’s no good reason for why my body does what it does.

I have found a combination of hydrocodone and oxycodone to work well for me in managing my pain. I have a healthy fear of addiction, and have voiced this concern with both my medical team and my family. Not only do I hold myself accountable, but so does my PCP and my wife. I find this helps alleviate the fear and the stigma of taking pain medication. I honestly don’t know what life would be like if I wasn’t able to have my pain managed.

I suppose with all of my ramblings on, I just want people who pass a massive amount of stones to know that living a regular life is possible. I see so many people who withdraw into themselves out there, I want those people to know that you can beat this.  It’s all a mental game, and it starts with making the time to enjoy the small things.  Take the time to work on YOU!  Go fishing, go for a hike. It’s amazing to me how much better I feel about all facets of my life after I get back from an outdoor excursion.

 

About Jerry Cepican

I grew up in Indiana and moved out to the Great Pacific Northwest when I got married in 2000. I have been married to my beautiful wife for over 15 years, and have a daughter entering high school. For work I am retired (after over two decades) from the Disaster Restoration Industry due to my illness. My main two hobbies (besides family) are Fishing and Baking and Gardening. While I have been a kidney stone sufferer for over 28 years, I do not allow that to define me.

64
Leave a Reply

38 Comment threads
26 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
48 Comment authors
  Subscribe  
Notify of
c

I am a 64 yr old female. I have had stones for 3 decades. I want to say, that in 2016, I went completely vegan and that year I had 4 surgeries to remove stones, the most surgeries in one year, ever. Eliminating meat was the worst thing. I eat small amounts of meat, and not every day, so going vegan did nothing. I did some research and suspected that I could have hyperparathyroidism. This started out good, the calcium levels were high, but suddenly the endocrinologist abandoned his thinking and suggested I was simply low in Vitamin D. I have passed many sizes, even a 8/9 mm. Now: I just tell everyone ” I am a stoner, not the fun kind!”. There is a family history…

Louie

In late May of this year, I had another laser assisted procedure to break up and remove the multiple stones in my right ureter, and some much larger stones that could not get out of the right kidney. There was a lot of blood and fragments that continued to pass for about two months. My kidney function took a definite hit from the blockage, though there was some improvement a few weeks after the procedure.

Now I am back to my more typical stone production in which I tend to pass a lot of small stones on a daily basis. Since the “clean out”, it seems that there are fewer large stones, though I am having more kidney pain. We’ll see what the next scan shows sitting in there.

I’ve adapted to the steady pain and try to stay as engaged as possible with everything and everyone around me. It always surprises me to realize what we are actually capable of getting used to.

Jerry

Louie,

It surprised me also brother. Though, I don’t think that we should have to get used to it. I used to think Doctors knew what they were doing and could actually help people. Alas, I’m the smartest guy I know. And I’m not near as smart as I think I am.

Jayne

I have not seen one comment on removing animal proteins completely from the diet. I had 7 kidney stones comprised of uric acid and calcium oxalate in short order. Animal protein causes uric acid build up – you can read about that anywhere online. I became a vegan and the stones stopped immediately. That was that 20 years ago and no stones since.

Louie

I produce an average of about ten thousand stones per year – ranging from catchable grains of sand to stones in the 10 to 14 mm rage – the big ones don’t pass. We’ve tried diet changes, medications and a daily regimen of lemon juice in gallons of water with no perceptible change. I produce, in relatively equal numbers uric acid stones and calcium oxalate stones. I currently have a stent bypassing a string of six large stones in my right ureter – the largest of those is 11mm by 6mm and the smallest is about 5mm.

The largest stones I’ve successfully passed are in the 8 mm range. This level of production began three and a half years ago with a very bloody, high stone volume event and then never stopped since. With larger stones, I tend to pass a good deal of blood. I used to get the full right flank pain/throwing up/ and climbing the walls reaction even with relatively small stones, but my system has adapted to the high volume and not only the. very largest stones will make me that sick. On the other hand, my right kidney, where most of the stones come from, is sore and tender almost all of the time.

I can get a CT Scan done that will show a handful of tiny stones, and a few days later start passing whopper after whopper. Lately my kidney function has been diminishing. The doctors kept telling me that they didn’t think the high stone production was doing much to my kidneys, and my Creatinine and GFR levels seemed to confirm that, but my Creatinine kept slowly creeping upwards and my GFR downward. The scan they did this past week shows “significant atrophic damage, substantial scarring and thinning of the kidney walls” in both kidneys.

Everyone seems to throw up their hands and tell me they can’t figure out how my kidney can make stones so quickly. One doctor suggested the possibility of removing the overactive kidney but that seems both dangerous and unreasonable in that the other kidney also produces some stones and always has a few waiting.

My main nephrologist looks at me sympathetically, but no longer knows what to do. Recently, I came across some literature that links kidney stone production with malabsorption issues in the gut. I have significant malabsorption issues due to an autonomic nervous system disease called Multiple System Atrophy. It is incurable at this point, but it may end up making some sense out of what is happening to my kidneys.

Has anyone run across people that produce stones at such absurdly high rates?

Mark

I understand what all of you go through. I pass about 4-6 stones over the 6-8 mm size a year. I presently have 20 on each side in the kidney. 3 months ago I was told the largest was 4. 3 weeks ago went the the emergency room where the found a 9 at the top blocking my right side. The following morning they blasted it and put in a sent. 3 weeks later the stent is still there and the stone hasn’t fallen apart. Feel sorry for my wife as I don’t want to do anything!

Troy Moser

I am 38 years old. Male. Got my first kidney stone in 2005. I was 25. Wow when you dont know what it is at first, can be totally scary. It hit me like a ton of bricks while driving. I thought i was going too pass out! Didnt have another stone until 2014. But since they have been chronic. Usually passing 1 to 3 stones monthly. Usually able to pass them on my own. February 1st old this year I had my first stone i just couldn’t pass. Ended up in the ER and then passed on to another hospital. Now it’s almost 2 months later. I’m literally sitting in the waiting room for my 7th ESWL in 9 weeks. I’ve had stents for about a month. My urologist hopes this is my last lithotrpsy procedure. I hope So! But I still haven’t been told what is the cause. I’ve noticed since starting these surgeries my blood pressure has skyrocketed. Even noticed by a nurse I have A Fib. I’ve got family history of thyroid issues. Could this be a cause old any old this?

Brian

I am a newcomer to kidney stones. I thought I had passed several stones over the last few months but the CT scan showed there was a 7×4 mm stone stuck in my ureter. whenever it moved into a position that completely blocked flow I would experience the acute pain. I got scheduled for the scope/ laser surgery and meanwhile my wife did some research and found a bunch of info about this herbal supplement stuff called Chanca Piedra, which translates to “stone breaker”. The stories about this stuff getting rid of stones are amazing. I figured what the heck so we bought some from Amazon Prime and I started taking the maximum dose, 5 pills a day. I stopped a few days before surgery so I took it for either 6 or 7 days. After the surgery the doctor said he could find no stone. He went past the point where it showed on the CT scan and all the way to my kidney. No sign of a stone. He said the only explanation was that I had passed the stone. After thinking about it I realized he was right. On the last day I took the pills, I felt the kidney pain, but very low level, sort of like it was getting geared up, but it did not get worse. I felt the pain for a couple hours, but again it was not real bad. Around the same time (the day before to the day after) I noticed when I urinated it felt funny, like maybe something was in the flow besides just urine. I am now recovering from the surgery and taking Uribel. The chemical in the uribel makes me feel similar when I urinate: “funny”. Pretty much the same feeling, but more intense with the uribel. Not really pain. But definitely not pleasurable!
So it is clear to me that the Chanca Piedra must have softened and/or dissolved the stone and what I felt after 6 or 7 days was it passing out of me. I am in way more pain after the surgery (because of the surgery and now the damn stent) then what I felt from that stone leaving me.

Pete

I have to agree with you, Brian – Chanca Piedra is a life-saver. I haven’t read through this entire site, so I don’t know if it is mentioned in other articles or comments. I have been getting stones, average twice a year, for the last 10 years. Tried Chanca Piedra when I got the very first stone – after hours of searching on the net on what to do about this unbelievable pain. My wife found it in a Health Food store. I have never been to a doctor for the stone pain and I have never felt or observed any stones pass because Chanca Piedra has always done its job, which is to dissolve the stone. I understand that it may not work for everyone (different kinds of stones) but I will always have a bottle in my cupboard!

Jeremy R Parks

I found out last Sunday I had two stones about to leave my left kidney and 2 more still up in each of my kidneys, so 6 total. I was put on flowmax and started taking “Chanca Piedra”. I had an intense urge to urinate the past day and a half and this morning I passed 5 stones total. One was 3mm and the others were right at 1 to 2mm. The Chanca Piedra is a life saver. It broke mine down and the pain was just uncomfortable, I only had to miss work on monday, which is why i got the Chanca Piedra. During this whole ordeal, the pain sucked but was very tolerable. I’ve broken my back twice, neck once and shattered my foot, so the pain from this was like a bee sting compared to those. It helps to know thats it is temporary pain and will get better. Mine were not big by any means, but still sucked.

Abdul Aleem

i have undergone bilateral mini pcnl procedure and 2 residual stones of size aprrox: 5 mm left in the left kidney. my urologist said it will pass spontaneously, can any one tel me that after having pcnl can i go through eswl for remaining 2 stones?
reply plz

padraig

You should use one tea spoon of bread soda in water this will help you

atr

I am female, chronic stoner calcium oxalate. 1st lithotripsy in 2011, I had been in severe pain for many months. Still worked, tried to have a social life. 1st stone was 21mm, size of a quarter, yet at the hospital with 104 fever, they gave me Cipro for acute Pyelonephritis and 1600 ibuprofen and sent me HOME. Like I was going to pass a 21mm stone. I have had 4 Lithotripsies so far.

There is a fallacy continuing about the general doctor profession and even in kidney circles that stones don’t cause pain unless they are in the ureter. This is completely untrue, and a usual reason for hospitals to send those unfortunate souls home without further treatment or direction.

In the kidney there are spasms and swollen areas on your back and side, that out of the blue will grip you in pain for short bursts causing you to cry out unexpectedly and embarrassingly, and just a few of those a day can leave you exhausted.

If your stone is 9mm or more you need assistance. period. Another thing I learned and proved with my last urologist is something I read from a male on the now defunct stoners.org site. He described the intense pain where you feel panic and perspiration like a cat thrown into a lake who is paddling desperately searching for an edge to climb out. That during this episode he would get a sensation near the end of his penis like the rock was there but couldn’t feel it while pressing his flesh. So his solution was to immediately drink a 2 liter of liquid and hold himself shut physically if necessary until he felt a push and the pain stopped. (not recommended). Since I’m female that location is a bit different.

However I determined that when the sensation was intense in my urethra it was actually at the junction of my ureter and bladder and it was having a hard time getting through. Oddly it only sometimes shows as just a shadow on the xray. I had my urologist go in with a cystoscope and he could see them at the entrance. After several attempts to manipulate he opted for calling the hospital. While he was calling, they slipped through and the pain stopped. He retrieved them from my bladder, a 9 a 5 and a 4 all trying to get through at once.

Now here is the key and the saving grace that can work on both genders. Because that intense pain is felt at the tip and it is referral pain if you put generous benzocaine on the end of your urethra. You will still be uncomfortable, but much better.

As for younger people, have your doctor look into the parathyroid for chronic stones, unless you have a family history.

Anne

My son is 21 and has multiple kidney stones in both kidneys. We have been told, by urologists, that “I have nothing to work with since none are in your uterus ” my son usually passes them in the hospital a day or so or hours after this statement made by many doctors at many hospitals many times. This most recently hospitalization they gave him regular Tylenol!

My son can now legally “self medicate” through alcohol. His full scholarship to a really tough school had to be put on hold until he “gets his kidney stones under control.” He cannot and does not want to live — like this. Solutions? Anyone?

Hello. I am sorry to hear about the challenges you and your son are facing. I have faced a chronic pain issue myself. Your son needs to see a competent physician, either a urologist or a nephrologist, who knows something about kidney stones. Ideally, get him to Univ of Chicago, or another medical school near you that has a training program in nephrology. It is likely that he has something like medullary sponge kidney. Ideally at least 1 of his kidney stones has been analysed, but, playing the odds, he likely has calcium oxalate stones, and likely he has had at least 1 x-ray or CT scan of his kidneys that would show an abnormality of the structure of his kidneys. Until you are seen by someone who truly knows about kidney stones (perhaps an actual Kidney Stone Clinic), it would be wise if he increased his water intake to 1 liter a day more than usual (which should give him about 2-2.5 liters of urine a day), limited the oxalate in his diet, and perhaps either get a prescription for Kcitrate or take lemon juice (not lemonaid). Go to kidney.org for reliable guidance. If another doctor belittles what he is going through, be sure to get their name and report them to the college of physicians and surgeons in your state (they regulate the docs and will take your complaint seriously). Take heart, there are people out their who can empathize even if they have not had a stone themselves. Signed, a doctor who knows about kidney stones

zak

Hello
I am a men who is also considered as a stone former.
I get a stone first at year 2002 and have to use endoscopy to remove it
3 year ago I have a shock wave (SWL) procedure to remove a few stone inside my kidney. And then now the cycle come again. Got 2 stone about 8mm inside my kidney and another one inside ureter 7mm at the same left kidney. And also a few small stone about 3mm at the right kidney.
At first doctor use SWL to try to remove stone inside my ureter but not success. Then change to via my ureter all the to remove stone inside ureter and proceed to inside my kidney. Doctor leave a stent and tomorrow i have a appointment to remove it.
Last time the procedure is cheaper. It is about RM10K or about US3K for endescopy but now the cost is around US10K here in Malaysia.
I also try a lot of other method try to prevent it. I don’t eat red meat.Drink a lot of water. Now i want to try reduce salt and gravy in my food. Hopefully it can help.

Debe Abrahamson

sorry to hear what you went through

debe abrahamson

I HAVE HAD OVER 500 KIDNEY STONES AND STOPPED COUNTING AFTER THAT !
OVER A PERIOD OF 34 YEARS I AM A FEMALE AND HAVE BEEN TOLD NO MATTER WHAT I TRY AT THIS POINT I WILL CONTINUE TO PRODUCE THEM .I HAVE BEEN STUDIED ALL THOSE YEARS THROUGH STONE CLINICS UP IN THE MIDWEST AND HAVE HAD TOO MANY SURGERIES TO COUNT!! I NOW LIVE IN THE STATE OF FLORIDA AND HAVE INDURED 5 BOTCHED SURGERIES . TWO ALMOST KILLED ME SO MY COMMENT IS THIS— BE CAREFUL WHO YOU CHOOSE AS YOUR UROLOGIST,MOST PEOPLE WHO PASS UP TO 5 STONES WILL NOT HAVE ANY MORE I AM RARE BREED OR AT LEAST THATS WHAT IV’E BEEN TOLD TO PASS AS MANY AS I HAVE !!! MOST OF THE TIME CAT SCANS DO NOT PICK THEM UP AND I HAVE BEEN TOLD BY A DOCTOR THE REASON IS IF YOU HAVE ALOT OF FECAL MATTER IN YOUR COLON IT MAY BLOCK MOST OF THE VIEW THAT THE RADIOLOGIST NEEDS TO SEE. THE BAD THING ABOUT THIS IS USUALLY THIS IS AN EMERGENCY SITUATION AND OF COURSE YOU CAN’T TAKE TIME TO CLEAN OUT YOUR ENTIRE COLON SO THAT’S A PROBLEM WHEN YOU HAVE TO GO TO THE EMERGENCY ROOM !!!!ALSO IT REALLY MATTER WHO READS THE CAT SCANS THEY MAY BE GREAT AT FINDING MASSES OF CANCER IN YOUR BODY BUT WITH STONES — THINK ABOUT IT THEIR 4,5,6 ETC. MILLIMETERS SO IT TAKES SKILL TO FIND THEM. I CAN’T TELL YOU HOW MANY TIMES IN 34 YEARS THAT I HAVE HAD TO ENDURE GOING TO THE ER JUST TO BE TOLD YOU HAVE LOTS IN BOTH KIDNEYS BUT NONE IN YOUR URETERS!!!!!
ONLY TO BE SENT AWAY DOUBLED OVER IN EXCRUCIATING PAIN !!!
CAT SCANS ARE THE BEST FOR FINDING THEM ,FORGET THE CAT SCAN WITH THE DYE IT DOES NOT WORK!! JUST ULTRASOUND DOES NOT WORK EITHER IT JUST HELPS TO FIND STONES IN THE KIDNEY –BUT NOT IN THE URETERS!!!!!
A KUB IS BETTER THAN AN ULTRASOUND !!! BUT A CAT SCAN IS THE BEST!

no name

I am also a multi stone former and have had 7 years of admissions to hospital for pain relief, etc. My stones are many and small and no one can ascertain what they are made of. My saviour has been a great Urologist in London who performs ureteric stent changes every 3-6 months, which involves a general anaesthetic every time. I now have 1 – 2 emergency admissions a year which is much more bearable than every 4-6 weeks. It may not be a cure but I can now live my life much better. There are side effects with a stent but nothing like the effects of passing stones every few weeks!!

Emil

This is my second stent, just inserted into my right side. The first time I had one was 4 years ago, ended up going back to emergency after 5 days to have it removed due to the pain, which I can tell you was not to far off as passing a stone. Doctors said this stent is different and will be manageable, BULLSHIT, it’s ok when you don’t need to urinate, but you curse the doctors to hell every time you go to the toilet. Dont know what the answer is, unfortunately some of us are stone producers whatever we do.