Skip to main content

Anyone on this site have an issue with Kidney Stones? When I had my first surgery back in 1993 to have my colon removed, my surgeon told me that I have Kidney Stones and the reason was because I do not have a health Colon and I would continue to have them once I have my J-Pouch.

I get them all the time. I have 3 right now and my Urologist told me I will have them the rest of my life since I do not have a Colon and thereby cannot retain much water.

A few years ago, I had 7 stones and one them had to be blasted out since it was about an inch in diameter. I am on meds for this and need to drink more water.

The first time I had them was over 20 years ago and to pass that out, well that was no fun for a man. Carol Burnett once said that in order for a man to experience what it is like to give birth to a child, he would have to put his lower lip over his head.

Does anyone here on this board have similar issues with Kidney Stones?

Rocket
Original Post
Hey Rocket,

I had colitis for nearly 19 years and developed kidney stones in 2004. When they did my last CT scan and ultrasound, I had 10 stones in my left kidney and 9 in the right. Mine are pretty small and I have passed so many now, that I can actually tell when I am passing one. Like a dull pain in my lower back. Luckily they've all be small except for the very first...that was a doosey!

Anyway, part of our existence I suppose. You are not alone!

Mark
Hi Mark,

Gosh, I thought I had a lot of stones when I had 7 but you had 19.

The very first stone I passed was one that had a jagged edge all around it and I screamed. The Jagged Edge was cruel. The second one was the size of a mini-ball which was painful but noting like the first one.

My urologist told me I will have Kidney Stones the rest of my life. I am on a prescription for this too. Oh well, no use being miserable about it.

This too shall pass, pardon the pun. I believe patients like us that have to go through so much and has made us strong internally and spiritually. Not everyone has this kind of strength. Then it comes to our attitude. Either you can choose to be miserable and angry, or have a positive attitude and be happy.

When I had Kidney Cancer in 2009, that actually did me some good mentally. Once I found the right surgeon at Memorial Sloan Kettering in NYC, I was very comfortable and relaxed and at that point the doctor had no way of knowing if the tumor had mestasized or not.

My parents worried but I smiled the whole time after I told them. The best teacher I had is when I saw several children when I had to go to prestesting. Some of these kids had no hair from the Chemo and many looked like about 7 yrs old not knowing what was going on.

But what struck me the most is they all smiled and laughed. These kids have more courage then anyone I had ever seen.

Rocket
Rocket,

Yep, my stones are plentiful and I make more than I pass which has my doc a little concerned. I have done 2 twenty-four hour urinalysis and have been found to be citrate deficient. The doc has not put me on medication as he is hopeful that it can be corrected by drinking orange juice and more fluids. I am not so sure about that!

I really an relate to your comments relative to attitude. It is the one thing we can control in our lives and kids quite often set the best examples when faced with chronic conditions. Congrats of surviving your encounter with Cancer.

Would you mind sharing what your doc has put you on for the stones and whether you suffer any side effects due to the meds? I am pretty sure I am heading that way.

Thanks,

Mark
TheStomac,

I am currently on Chlorthalidone Tabs of 25Mg which I take every morning. Mine is due to too much Uric Acid. I had been on Potassium Citrate before being put on my current medication.

Your doctor should put you on meds and what foods that can cause your stones. I have other health issues too so its hard for me to answer if I have any side affects.

My current meds are supposed to make you urinate more.

Rocket
Hi Rocket,

Maybe this may help you. I have uric acid kidney stones, which is something like kidney stones, it is from dehydration and to much protein and calcium in the diet!. Because you go to the bathroom often you loose a good amount of water in your body. I take Potassium Citrate crystal everyday. I also drink about 80 to 100 ounces of water daily. You may want to consult a different Urologist.
I've had two bouts with kidney stones, both times ended up in the ER for pain. It was so bad that I was on my way to vomiting and passing out. The kidney doc told me that drinking lemon water every day would help decrease the frequency of stones. This helped a friend of mine cut his frequency in half. For me, it gives me butt burn, feels like acid on my skin, so I haven't stuck with it.
I had my first kidney stone 38 years ago, a year after my colon was removed for UC. The first stone was 100% uric acid, but since then they've been calcium oxylate. Both my kidneys are rock quarries. I've passed many many stones, had them blasted, and had them removed by ureteroscopy with laser lithotripsy when they were too large to pass through the ureters and got stuck. There are still too many to count in both kidneys. I took hydrochlorothyazide for years, which slowed down the rate of stone production, but it drained me of my potassium, which could only be replaced by taking Slow-K, a prescription potassium supplement. When they stopped making that, I could not find a potassium supplement that I could absorb, so had to stop the hydrochlorothyazide. I tried Potassium Citrate but couldn't take it because it gave me severe diarrhea. I drink a gallon of water a day, but still form them. Such as it is... Debbie

20+ yrs ago (about 15 after pouch creation) I got hit with a pain from hell that kept coming back in every increasing waves...called a friend...she called an ambulance. I was shrieking!

That says a lot for me who usually doesn't make a peep.

The ER doc on call guessed where I lived and what I had even before doing any tests...And told me that my neighbourhood was known for kidney stones (??!)...turns out that high lime deposite (calcium) in the drinking water leads to this too (kind of a paradox...the more you drink, the more you get!)

His advice? Stop drinking tap water and Never drink mineral water. Only drink filtered water. 

I bought a brita and have used it ever since. I cook with it, make coffee and tea and have one in my ice cube maker too. I only get stones back when I go long periods without using the filter like on vacation or when I get too lazy to change the filters.

It may not be a 100% solution but it does help a lot.

Sharon

I am in so much pain in my left side below ribcage. Just had a Sigmund pouch has ulcers and inflamed. Waiting for results of biopsy.  Had blood and urine test. It has been 23 years since my sugery, had this pain before very small stone never will pass because of location. I've only had Pouchitin two times. But lost of migraines, dehydration had to go to hospital. This discussion has helped me ask more questions of my Drs. 

God bless you all for sharing. I pray to get answers tomorrow and maybe more test.

Sometimes I get scared and sad. Most times I just push through.

Pamela, email 52PamaJama@gmail.com

I was diagnosed with colitis at 19 and became a jpoucher by 21.  My first kidney stone occurred this year at age 39.  Feeling pretty fortunate that it was 20 years later but now I'm concerned about recurrent stones.  I am starting to feel the same back pain that I had earlier in the year.  I am taking potassium citrate, but jpouch has a hard time with the whole pill at once so I break it in half.  Every time I alter my diet to include more fruits and veggies, I am reminded that my jpouch believes in moderation of those.  Any recommendation for successful diet changes for jpouchers to help prevent calcium oxylate stones?

Thanks,

Shannon

I had my J pouch surgery in 2002, and i apparently slowed my drinking of water over the years, so i had a bad kidney stone in a couple of years ago (had surgery, etc.).  They wanted me to take citrate (potassium or other) to help (i had/have low citrate levels in urine), but i just drank more water and was clear in my yearly visit and hopefully it will continue to do the same.  So far, so good.  Doctor approved my plan after i was clear, etc.  Remember - stones will vary, so not all fixes work for everyone.  But, i think water pretty much should help for all (or at least not hurt).  So, my plan and recommendation is to:  DRINK, DRINK, DRINK and WATER only/primarily is best.  

As an aside, i just got a low bone density test, so i'm starting to take calcium citrate powder capsules.  we'll see how that goes.  it's tough for us b/c like most, i don't have any green leafy veg.  i had one piece of romaine a couple of months after my surgery and ended up in the ER.  Back then, Doc said i should avoid all leafy greens, etc.  Bc of the scar tissue, high chance of it getting stuck.

WILLR6,

They make powdered greens and liquid green drinks so you can still get the nourishment that leafy greens provide. Or you can juice and/or blend them yourself.  Just test them slowly as even pulp is roughage so you'll need to see how your gut handles it. It's really important to get the vitamins and minerals they provide. 

Debbie

well low and behold i check in too site and see all this stuff on kidney stones i was up until recently oblivious to!!! had my first ever kidney stone about a month ago 10 years after creation of pouch..It was worse than having a baby had to go to hospital after getting tons of pain killers after 24 hours it evacuated.. just thought it was one of those things..never related it to pouch .so now i have this concern reading all this about type of stone,calcium or not,and so on..i went to hospital as i said and they never tested stone..no one at time related it to anything..i did not go to doctor there after..seemed plenty of people have them with a colon..it certainly is an experience i do not look forward to it was simply awful pain..

 

so question i have should i be drinking tons of water whether its pouch related or not? sharron mentioned not to have mineral water ..i do and have sparkling water was in fact something i called a treat in my restricted eating drinking life we face with problem pouches like i have had for 10 years..i also take calcium because i have osteo porosis and have bone loss i do not want to get worse...so whats  the best thing i can do under circumstances..

wondering to i have appt with my l.a. pouch doctor down the road should i mention my kidney stone incident to him ..do not go to a urologist in years to busy with pouch doctor!!!

 

thanks

rebe

You can't treat (prevent) every different kind of kidney stone with specific measures at the same time! It would drive you crazy. If you at least had an x-ray the doctor should be able to tell you if the stone showed up or not. Some stones are visible on x-ray and others are not. That would narrow it down, at least.

The vitamin D issue only applies to oxalate stones, and it's not that you can't take vitamin D, just that you should take the calcium supplement (without vitamin D) at a different time (as I understand it). A low oxalate diet can help, too, but it's complicated.

Drinking plenty of water is important for all J-pouchers, but it's even more important for those prone to kidney stones. Stones form when *something* is concentrated in the urine, leading to crystal formation. Plenty of water ensures that nothing is in high concentration in the urine.

No one has posted on here for years so don’t know if anyone will see this. I have my first kidney stone and have had my jpouch for over 20 years. It is 5mm. It is a sill question, but am wondering if a stone could cause any kind of partial blockage with pouch??  

I found everyone’s posts on here so interesting and helpful.  And kind of scary. 😱

Hi Banditgurl, I don't see how a 5 mm stone could cause a bowel blockage. Even if a fistula formed between the urinary tract and bowel and allowed to stone to pass into your intestines, a 5 mm stone would not be large enough to cause a blockage in the bowel, unless you had constrictions that caused the opening to be less than 5 mm. It would possibly get stuck in one of the catheter openings though! I highly doubt the two are related. Good luck to you.
Debbie

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×