Something 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.
try the prescription drug Ketorolac 10Mg ($2/pill) and let me know how much it relieves the pain. My profile is similar to yours and It eliminated the pain for me in 20 minutes. I want to see if it works for others.
Paul here.
Loved reading the post so as a man thought I would share a few thougts here too. My brother John and I have a history of kidney stones, 3 each now at this time. Brother John who is two yrs older had his first one at age 36 and sure enough so did I two years later at 36.
Fast forward 34 yrs later now at age 70 I just had my second kidney stone attack only to find out I really have two stone son my left side. One 5.7mm stone in my kidney and one about the same size almost into my bladder discovered by X-ray and ultrasound exam.
NOTE: being an experienced radiation worker with over 33 yrs experience radiation is cumulative and less is best. FACT: Cat scan has three times the rad dose than a Pet scan with 1/3 the image clarity . When I had my Xray done I asked the radiation tech what each shot dose was and she said about 22 mr (millirem) . Further don’t buy into routine dental X-rays either, say NO WAY- If I have a tooth pain than we will have a look see and only then!
Any way back on track with the kidney stones. I called my brother John ,now 72 with the news of my discovery of two stones only to hear him say he has had three now two. So being proactive in my healthcare I just had my urologist go in today and remove them both by his laser blaster and install a stent which will be removed in 22 days. When I made my first appointment with him the first thing he said was we will order up a CT scan than I informed him of the facts of the dose rates with CT scans. Poor guy did not know what to say when I explained the facts to him. Bless his heart he did listen and ordered the Xray and ultrasound exams that showed both stones.
Here is another tid bit of good info I learned from an on call doctor in the emergency room. He said that a electric heating pad does wonders if you lay your aching painful back on it in a T-shirt set on medium or high heat setting. He also explained to me this info. In his years of experience when the kidney stone reaches the bladder most of the time your pain is gone and over time the stone with break down so you can just pee it out. Funny, he said think of it as putting your clothes in the clothes washer where the stone get tossed around and broken up.
I have a VEGAN lady friend who only drinks deminerized DISTILLED WATER you can look for and buy in most grocery stores. Something to think about.
Once the lab reports come back with the results of my tests on the material structure of my stones I will be able to know what to avoid in my diet to prevent future stones .
Check the water; Indiana has extremely high mineral content in its water unless you are using a water softener and there again, that too could lead to a problem.
My Kidney Stone composition 97% calcium oxalate monohydrate 1% calcium oxalate dehydrate 2% calcium phosphate Help!
Sounds pretty common.
What are you needing my particular help with?
Your Primary will / should refer you to a Urologist. Likely your PCP will order up the standard labs. The Urologist will then look at those, and give you their advice.
My advice? Listen to your Doctor.
Man your story sounds so familiar to mine. I started passing stones about 15 years ago. Up until about two years ago I would only pass about 2 or 3 a year. Now I am passing anywhere from 5 to 10 a month. I just recently had a uteroscopy done because I had a 5 mm and 6 mm stone that were two separate stones to begin but ended up getting connected together so needless to say I tried to pass them for almost two weeks and it just wasn’t happening. I live in constant right flank pain. I do not take any kinds of pain meds. I just try and tolerate it I guess and have come to realize that this is something I will have to always deal with. I have numerous stones in both kidneys as of now. But thank goodness I don’t have problems with the left side as of now. But I am going on my sixth postoperative day and I just don’t feel right. I feel like my right side is filling up with fluid. I am experiencing some pain and discomfort as well. Just tired of being tired.
I’ve stopped taking the aforementioned pain medication, due to the results of the last few years of study with the newer functioning MRI machines.
Now I take mmj, in concentrate and edible forms (primarily).
I’ve lost 65lbs, and am MUCH more active.
As my daughter said “I’m glad I have my Dad back, instead of a kidney stone factory”.
That sounds harsh, but that is the reality either on or off of traditional pain management. At least now I’m “here”. In more pain? You betcha!
Better quality of life overall? I think so!
I have one question,maybe someone can help me with.Can a stone .7mm left in the kidney do any harm?………………………….Thanks for any helpful info!!
Dear Jerry, so sad for you, I’ve only had 3 and that was enough!
I see there are 3 common type stones, 2 more not so common. So when the report comes back from the lab it’s good to correct what may be the problem foods. Or at least eat less of them. I’ve had 3 different ways of getting mine out, all 3 worked fine involving the Dr. The last time the Dr. Said when he puts the stent in he has better success with them not coming back as much. I had the stent and pulled it out myself, Not hard or painful, like a catheter. I’m sure it may be harder for a man?!
Anyway I will pray for you and I feel u r the king of kidney stones!
Also wanted to say, before the stent came out the drainage was enormous, I had to wear a pad and always cover under me so I didn’t leak. I think I should’ve been told about that. After the stent, it seems debris came down and I had to go back to ER as the pain was bad again. It passed, looked like pepper, so plan on that and hope it doesn’t happen, take your pain meds.
Also the pain med really makes u constipated! I tried ginger and warm water for gas, and powder to help get me going, it’s slow but doesn’t make cramps worse. Consider an enema?!
I’ve only had 3 kidney stones, and some gravel after. All were horribly painful, but when u go to ER and they give u that shot it all ok, Then they decide what to do, I’ve had laser, litho and basket, all different for the same problem. I had the stent put in and cuz I lived out of town was advised to take it out myself, So I bit the bullet and very slowly but firmly pulled the string, Not bad at all, kind of like when they take out a catheter.
I was so happy to have it out as before I was having a drainage problem. I would get gushes of pee and was unable to control it. Had to get pads and even slept with an adult diaper to prevent any water on mattress! Aftee the stent came out all went back to normal BUT later that day I had some debris that came down the ureter and it was pain all over again. Went back to ER for that shot, came home and they passed. Had some cramping cuz pain mess make u constipated, but working on that and will soon be back to normal. YOU are the king of kidney stones, I pray you find out what is making yours. I’ve heard drink distilled water, no soy products and no caffeine.
I have been doing am shakes with fruit and Vegs I Amy have to stop them if when lab shows what kind they are. Hope you get better soon, CM
I was recently diagnosed with 7 kidney stones, which turned into a 4mm stone on the right side moving down and blocking my ureter. I’ve never been in such pain in all my life, it felt as if someone was taking a sword being made in the coals of a 3,000° fire was impaling me from my groin through the back just below the ribs.
I currently have a stent on the right side and have an appointment to get a ureteroscopy done and the stones (3 left, 4 right including the one still blocking my right ureter) removed via laser and basket retrieval. Needless to say, I’ve read and watched many things about the procedure, and after 4 days now with the stent I am no longer scared at all. Maybe a litter nervous about stent removal.
I can truly say being a part of this group (stones) is one of the most frustrating things about life.
Your story though inspires me to suck it up, and do my best to commit to prevention for the rest of my life.
My sister and I both get Cystine kidneystones. They are very different from calcium based stones. I’ve had nearly 30 bilateral uteroscopy’s (removing the stones with a basket by entering through the penis). The operations over a course of 25 years broke me financially. I decided to just try and see if I could take pain meds and pass them. I thought that was working because I passed stones constantly and was constantly in some type of pain from it. It’s been 5 years since my last operation. I just went through an episode where I found out that a stone has been blocking my right kidney for years and that kidney has atrophied. My left kidney got blocked by a stone and that pain from both kidneys being blocked caused me to call my Dr. who does the uterosopy procedures. Because of the way the Urologist goes in and the painful recovery I had vowed to NEVER have a procedure done again but there was no getting out of it. Now I have an atrophied right kidney that apparently isn’t functioning. Is there anyone else out there who has gone through this and may have any advice.
I have cystine stone also.
When I get a episode ,the dr has to get it from a neprholithotomy procedure.
Since the stones get to big.
I have had about 4 of there procedure
2 open surgery years ago.
Do you take medications to avoid making stones.
Pete, your experiences and how you have handled this condition are truly inspiring to me! I’m glad I found this site because until this week, I had no clue about how painful and prolific the problem of kidney stones can be!
My daughter was admitted to the hospital for the umpteenth time this week due to her crappy immune system from GSD type 1b. While in, she also experienced problems with her creatinine levels from all the drugs she’s had to take over the years for her liver transplant and infections.
Well I just started to have blood in my urine and intense pain that kept me from going to work. My doctor felt I was probably having an issue with stones and ordered an ultrasound for the next day. Well that was this morning and the results will not be read until next Tuesday when I see a urologist.
Tonight I gave birth to my first stone. It couldn’t be more than 3mm big, but what a lot of pain for such a little bugger!! I am still sore and feeling a little pressure, so I am not sure if there is more to come or if that is just the residual feeling from what I just went through…if anybody knows….
My daughter and I definitely live life moment by moment. She has lost a sister to her illness and a brother to SIDS. My son is healthy and has given us a wonderful grandson/nephew whom we spend lots of time with playing and getting into trouble.
My daughter also volunteers where I work as an instructor for persons living with major physical disability and other conditions. We know that life is a precious gift that we can enjoy by giving back to others and having fun.
Good luck to you, Pete. We wish you and your family many more loving days together.
Hi I am 53 and my kidney stone nightmare started in 2001 and continued in 2009, 2014 and just recently (I currently have a stent placed). My calcium oxalate stones were in the right kidney. I usually grow large stones, the last in 2014 was a combined total of 22mm. I had never passed a kidney stone up until this point. This past June I experienced the worst pain I ever felt in my life! Stone stuck in ureter!! Needless to say I ended up in the ER. That night I was taken into surgery to have laser lithotripsy but could not have it done because of the bad infection that was brewing, I ended up with sepsis and was in critical care with a stent and catheter. I was given some heavy antibiotics and sent home. My new surgery was scheduled a month later. Again I went in for laser lithotripsy only to find out that the stone that was stuck had passed and the one in the kidney was removed by basket and another stent with string. I came home only to go back the next day to the ER with a 102.6 temp and chills…sepsis again! I was instructed to remove the stent MYSELF on Monday, I am a little terrified about that but anyway I am so sorry for your situation and hope one day we all will be stone free! Your attitude about this horrific disease is wonderful. Thank you for listening.
Great story, and also great comment at the end about not letting this terrible business take over our lives. I have had two surgeries and two stents within the last month and a half for calcium stones. I thought the trauma was over until i started feeling the pain again in the kidney. A CT scan revealed a new struvite stone measuring nearly 20mm. The shocking thing was that this had grown only since my last surgery -a matter of weeks!
I am devestated. The first two surgeries had complications and I was bedridden completely for about 6 wks. As soon as I started to get a little more mobility, pain returned and here we are again.
When the Dr. saw the new stone, he couldn’t believe it, but not as much as the disbelief I had! I nearly passed out flat on the floor.
They want to collect more information on the stone before rushing into large stone surgery, as long as I can handle the pain for a week or two more. But honestly I am frightened by the size of this stone and it’s rate of growth.
I feel like it IS taking over my life. I used to love being outside, or hiking, but all that has been over for a while. I pray that my health improves, and I can come out of this. I am only 30 yrs old and this last few months have been my first and only experience with kidney stones, and it has been surgeries all the way. It is hard to keep the depression away, and to maintain a positive state of mind. But I am trying my hardest.
Hi Mechelle, Yes I have had 6 surgeries so far and now have a 13mm (size of a nickel) right next to my right kidney.. Here we go again…. Last wed. they put the stent in and now I have to wait 10+ days to get a litho… In pain again!!!
I recommend you see a nephrologist if you have not already Lots of urologists are interested in surgical treatment. They are surgeons after all but some are becoming involved in prevention and the cause of the stones
Trish
Hello ,I’m a stone maker for over 15 years after 2 years without a stone ,it got me again 2 weeks ago had a cat scan and show that I passed it the next day I had a fever of 102 off to the Er got a ultra sound and it showed a blockage from a stone that I guess the cat scan missed! Off to surgery and a four day stay in the hospital . My stent has been in for 2 weeks I have one more to go it’s killing me it’s seems to be giving me more cramps now .i dread going to work I’m a hairstylist and all the standing is awful .im to the point of just saying take the kidney out! I’m so happy to have found this site and know I’m not alone in this.good luck to everyone
Hi, to the many brave conquers of kidney stones!!
Yes, I have 2 smalls stones found 3 months ago via CAT scan. Is this causing my pain & intense attacks?? Only 1 of the 20 doctors I’ve seen think it could be. The rest can’t figure out what is causing the pain. I’ve had all the tests for stomach pain come back negative. All my symptoms line up with gallbladder stones, but hide a scan was negative. I have 2 attacks a week. They start with weakness, pain in knees, inability to walk, intense throat pain, upper abdominal contractions, sharp shooting back pain between shoulder blades, constant lower back pain, arthritis in hands, nausea, & muscle spasm\shakes. Also headaches in evenings & earaches when pain is worst. Sometimes, not enough strength to open a car door. I read that stones don’t cause pain til they leave kidney. A week ago when in ER, I was diagnosed being 9months pregnant (my waist is 29″!!) And another doc says I made this up. I’m tired of doctors making wild guesses & not having the energy to do what I want (to do things for others)! Does anyone with kidney stones have these symptoms?
Thank you for you time:-)
If I were you , I would see a cardiologist to see if you could possibly have an aortic dissection
I had a kidney stone in my early 20s and passed it with quite a bit of pain. About 3 months ago I experienced a pain in my left flank which I assume was a pulled muscle. After about a week of no exercise it stopped. A month later it happened again and also went away with no exercise. Last week it happened again but instead of getting better the pain has gotten worse. I went to a clinic and they told me I had a UTI because I had blood and bacteria (small amount) in my urine. The next day I had a CT scan and it said that I had a kidney stone but it was not blocking anything so that I should not have pain. They attributed it to back pain. They also gave me another urine specimen that was negative. Could the kidney stone still be causing me pain?
My experience sounds like yours with recurrent pain and a 7 mm stone passing from kidney and is now in ureter bladder junction. I totally thought it was a pulled back muscle but the UTI symptoms were always present when the pain would return, so I know it was not back pain. Plus I have never had back pain that severe, laying on floor of bathroom, face down, telling my husband it hurt too much to go to ER.
I still have pain and urinary issues even though the stone isn’t blocking any urine. Doctor thinks I will have symptoms until my stone is removed next week with uteroscopy. I am 44 female and have first kidney stone but have many female cousins and mother with stones.
Geezum Pete’s. And I thought I had it bad. I feel for ya buddy. I am currently on my 4th week off from work after having a sack of stones removed laparoscopically. Apparently the biggie that was broken up from lithotripsy became a sack of stones with no way to escape. The sack had a pin head entrance.
I now have a stent for the second time. I am only 107lbs 5’3″ so maybe that’s why I really feel it. Also experiencing a lot of nausousness. Not fun.
Stent removal on Friday, thank God.
I have to wait and see what kind of stones they are to see if they are calcium based. I have never been a big fan of water drinking. I work at a very busy job that can be hot and with no time for breaks. So I know over the years it has taken a toll on my health.
At 52 I know stones will be forever in my life. I know that staying active and healthy will help to alleviate stone formation but it can still get to you.
I look at it like this-it could be worse. So I enjoy my life and children too. Otherwise really? What’s the point?
I appreciate your reply and stark reminder about what’s important today, I appreciate it! Life is good. Saturday we went to the beach here, me and my girls. Next week my daughter (14) and I go to Florida with the extended family.
That’s why we wake up, put one leg in front of the other and keep on a truck’n.
That being said, Drink more water!
hello jerry, I tip my hat to you sir!! thats alot of stones(manOman) I have had about 7 stones in 15 yrs, I am 65 now.and I recently found out that I have 2 inside right now!!
the 6 have been dealt with by lipotripsy, at first the stent was terrible, I last one I had ,I did not need a stent(or any pain meds) right now I am under VA care.
I have increased my water intake and started eating friuits and vegeis. so we’ll see what happens. I have been lucky with stones compared to others.
I posted a comment earlier about the cause possibly being primary hyperparathyroidism. I have all the flagship symptoms of, and labs are positive for. Urologists usually don’t get the connection however. This is beyond their scope of practice, but it must eventually be looked at. Too many are suffering, and not at all wanting to go into renal failure, this is serious and inevitably MUST be considered and looked into. Scary!
Lily R,
I hope you get the answers you are looking for; good or bad.
Have as good of a day as possible.
Jerry
Dear Jerry,
I am eternally thankful for reading your story just now. I was diagnosed with a kidney disease several years ago, yet no one seems to know what to do. Passing stones has become my life. Currently, I have three obstructed stones (as of last CT scan) that will not pass and cannot find anyone to take them out. I have hydronephrosis and hydrouretrer. Your story has given me hope when I was just about to give up. I only pass maybe 10-12 a year and I thought I had it tough Ha! I also drink copious amounts of water and always have and am on potassium citrate. I realize from reading your story that I’ve let the weeks and months of pain dominate my life over the years and that I have to learn to own this and start living again. I am so glad your shared! Wishing you and your family the best!
Jane
Jane,
I’m glad that you will continue to refuse to let the pain dominate your days/weeks/months/years.
It’s something that I struggle with, heck we all do. I don’t see much difference in passing one a month to one every few days. It’s all relative, and both aren’t optimal for your / our mental health.
Reading through these comments has made a very tough morning with no sleep better. I now have just a little bit more energy to go do work and get the day dealt with to provide for my family.
Thank YOU!
Quite a story, Jerry. You are a strong man and I am so glad you have a supportive, understanding family. I’m dealing with my third kidney stone. I’ve already had 2 CT scans and will not go through another. Doctors love to order CT scans! I am sick of drinking water…gives me indigestion and makes me feel bloated and sick to my stomach. I don’t drink nearly enough.
I’m supposed to get a KUB x-ray today but don’t feel like more radiation, thank you very much, though I’ve already had so much what difference could it possibly make??( I had breast cancer years ago and that necessitated a whole lot of scans, etc.) I have found that Cystex (women’s section) plus 1/2 tablet codeine works best for me in dulling the pain without making me feel loopy. I ride a motorcycle and can’t afford to be fuzzy-headed. Good luck to you and God bless.
I am rather to the world of kidney stones. I think I might have had my first one at the age of 19. I ended up getting a UTI, but I think it was from a kidney stone to begin with.
I had my first one(3 mm) that I actually knew of back in December 2014, spent Christmas in the ER. 5 months later, I have a 2 mm one in my upper left ureter, and a 3mm one in my right kidney. Is there any way that I can avoid getting so many CT scans? I’m really hesitant to be exposing myself to this much radiation. Is uteroscopy a better idea?
Christopher,
My Grandfather died from Bladder Cancer. My Father died from a Brain Tumor. I was just open and honest with my Primary and let him know I don’t have any interest in being exposed to a lot of radiation. He said a CT scan is like 1,000 Xrays. And he agreed and won’t X-ray me anymore unless absolutely necessary.
Ultrasounds work ok, though it hurts like the dickens when it’s getting done if you have anything lodged.
How often do you have to deal with obstruction and/or multiple stones trying to come out of the same ureter? And also, do they put you on antibiotics a lot? Are kidney stones necessarily always going to cause infection? Do you deal with kidney infection ever?
Answer to your first question would be pretty much daily.
As to the the infections is never. I don’t get infections or cavities. I think I must have a really good immune system.
I am so glad you decided to tell your story, Jerry. I am in awe of you, and have great respect for you. You endure so much, yet you still manage to stay relatively positive. We are a lot alike in that aspect. I also agree that men don’t share as much as women do, and I wish more of them would. I think we all have a great deal to learn from each other, and I am grateful for the perspective you bring to our group. Thank you for taking the time out to share your experiences, and I hope it inspires more men to come forward in the future – whether they have MSK or not. Passing stones all the time isn’t easy, and we all need encouragement at times and to know we aren’t alone.
Best wishes,
Mary Maston
MSK Advocate
And I thought I had it bad with 14 stones in 15 years. I concur with your observations and take my hat off to you. I find that my GP has no idea what to do. I just got out of hospital and I am seeing a new Urologist this week. Hopefully he will help me but I am certainly glad I don’t produce at your rate. Going fishing in North Ontario next week so very thankful the stone is gone or the fish would be blushing from my language.
Thom
Wonderful story, well you know what I mean! I’m so glad you wrote yours for the men out there. I can’t fathom actually passing that many stones and yet you still are active. Your story inspires me to keep going Jerry. Thanks!