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

  1. atr says:

    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.

  2. Anne says:

    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?

    • Jerry Cepican says:

      Sent you a private email. Self Medicating through Alcohol isn’t recommended by anyone that I know of. I tried it, and haven’t drank in many, many years. I have another article up that talks about how I deal with this now.

    • Dr E Burgess says:

      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

  3. zak says:

    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.

    • Jerry Cepican says:

      I’m sorry for what your body does to you.

      I’m not a big fan of surgeries. Personally I’m not a candidate for ESWL, and several of the medications / options that work for others just aren’t an option for me.

      I’d be careful of having shock wave with multiple bilateral stones my friend. You can damage your organs bad.

  4. Debe Abrahamson says:

    sorry to hear what you went through

    • Jerry Cepican says:

      I’m sorry to hear about your body’s troubles.

      In August of last year I took myself off of everything, and have been trying to manage things myself.

      Flomax
      Zoloft
      Valium
      Cannabis

      That’s my fix. The Opiates just make you a zombie to where you’re barely alive. Not a big fan.

  5. debe abrahamson says:

    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 says:

      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 says:

      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.

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