I've had my ileostomy since November 2005. Everything has been going fine with the ostomy EXCEPT. I seem to have recurring kidney stones. Has anyone else experienced the same problems? I drink plenty of water and try to watch what I eat, but I still keep making them. Right now, I have a stone (size of a peanut) in my right kidney. My urologist just completed blasting and clearing my left kidney with a stone about the same size. We are getting ready to start working on the right kidney. Any comments?
bes0642
Jun 26, 2013 12:08 pm
Primeboy
Jun 26, 2013 8:53 pm
When I had my permanent ileostomy in 2010, the hospital's urologist warned me that I would be prone to stones unless I kept well hydrated. Three weeks ago, my urologist found a bladder stone interfering with my urine flow. I learned that drinking when you are thirsty is simply not enough. I need to drink so that I do not become thirsty.
Today, I was out in the hot sun for almost 5 hours (slow golf) and just kept guzzling the Gatorade, bottle after bottle. The curious thing is that I did not have to take a leak during all that time. When I finally urinated, it was darker than usual and minimal. I think this loss of regular flow can help crystallize minerals and lead to recurring stones. Maybe I need to reduce play on hot and sunny days. Good luck with your situation. PB
Today, I was out in the hot sun for almost 5 hours (slow golf) and just kept guzzling the Gatorade, bottle after bottle. The curious thing is that I did not have to take a leak during all that time. When I finally urinated, it was darker than usual and minimal. I think this loss of regular flow can help crystallize minerals and lead to recurring stones. Maybe I need to reduce play on hot and sunny days. Good luck with your situation. PB
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
monty
Jun 26, 2013 10:15 pm
Good luck to both of you. I had my stones before my colostomy and let me tell you, I never want to
go through that again. For me, this was a very painful experience and it felt like my back was breaking. Went to the emergency ward and my urine came out real rusty looking. After 1 pill which did not work and one hell of a bill, they sent me packing. Thank goodness my own doctor gave me a shot the next morning and a bottle of Demerol 80mg. I'm sure technology has changed since then, so like I said, good luck.
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Hollister
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Xerxes
Jun 26, 2013 10:40 pm
bes0642
Have they analyzed the type of stone you are producing? It is important to do so. Yes, hydration especially for an ostomate is critical, but sometimes it is due to our diet and/or metabolism. For example, a very high and consistent diet of dairy products could make you prone to calcium stones. A high protein diet could cause uric acid stones. Some people, by virtue of their genes, will produce excess amounts of uric acid leading to a possible stone. I would imagine that the physician did analyze your stones. Did you ask him/her?
X_
Have they analyzed the type of stone you are producing? It is important to do so. Yes, hydration especially for an ostomate is critical, but sometimes it is due to our diet and/or metabolism. For example, a very high and consistent diet of dairy products could make you prone to calcium stones. A high protein diet could cause uric acid stones. Some people, by virtue of their genes, will produce excess amounts of uric acid leading to a possible stone. I would imagine that the physician did analyze your stones. Did you ask him/her?
X_
bes0642
Jun 26, 2013 11:59 pm
Xerxes
Yes, the stones were analyzed.
65% Calcium Oxalate Monohydrate
35% Calcium Phosphate (Apatite)
Shell composition:
100% Calcium Oxalate Monohydrate
I consistently drink 6 to 8 16oz of water daily so I stay hydrated. He has told me to drop salt, vitamin C, red meats, and add lemon (Citric) to my liquid intake. I don't eat a lot of dairy products. I promise stones are not any fun due to all the pain.
He has placed stents in between my kidney and bladder to make sure there won't be blockage as the small pieces wash out after he breaks them up.
So we'll see how it goes from here. I appreciate everyone's comments.
Yes, the stones were analyzed.
65% Calcium Oxalate Monohydrate
35% Calcium Phosphate (Apatite)
Shell composition:
100% Calcium Oxalate Monohydrate
I consistently drink 6 to 8 16oz of water daily so I stay hydrated. He has told me to drop salt, vitamin C, red meats, and add lemon (Citric) to my liquid intake. I don't eat a lot of dairy products. I promise stones are not any fun due to all the pain.
He has placed stents in between my kidney and bladder to make sure there won't be blockage as the small pieces wash out after he breaks them up.
So we'll see how it goes from here. I appreciate everyone's comments.
My Ostomy Journey: April | Hollister
ddkraft
Aug 10, 2013 4:28 pm
Lecithin! Right now! Lecithin absorbs and takes out of your blood the uric acid that causes kidney stones to form. Lecithin is made up of two common "B" vitamins, choline and inositol, and is usually in gel caps of 1200 or 1600 mg. I used to have kidney stones every year and would schedule their removal on my vacation so I would not miss work. The urgency comes from the fact that - the longer you have kidney stones (in your kidney), the more "loops of Henle" get destroyed inside your kidney (they do the osmosis transfer of taking toxins out of your blood) and the closer you move towards kidney failure. Once a loop dies, it turns into scar tissue and does not work. Pretty soon all you have left is scar tissue and a non-functioning kidney. I have lived through ileostomy (still have it), kidney failure, dialysis, and transplantation. Please take care of your native kidneys by taking this simple vitamin once or twice a day. Doctors do not promote or condemn taking vitamins, but there are studies that show lecithin prevents the formation of kidney stones. I take 1200 mg of lecithin twice a day and have since 1987. I have never had another stone form in my kidney since (old and new kidney).
zanzi1
Jan 02, 2014 10:25 pm
Thanks to everybody for their help. Tomorrow, hopefully, in spite of the blizzard that is coming our way, I'm going to buy some lecithin. I have had my ileostomy and total colectomy for 40 years and have not had one problem until twenty years ago. Major pain, liquid effluence, loss of weight, dehydration. It never occurred to me that it might be kidney stones. I just went to the urologist for rusty and frothy urine and he found the stones and explained that people with ileostomies are prone to this. None of my other doctors told me this but I think it's because I had it so long ago and not much was known about ileostomies at that time. While I'm apprehensive about experiencing the pain of stones (I thought UC was painful) at least now I know what it is from, not diet, adhesions, etc. Thank you all for sharing your experiences on here. It is a great comfort.
Just to let you all know I have never had one problem physically with my surgery and consider myself very fortunate.