Seeking Advice on Passing Stones with Ileostomy

Wondering if anyone has had any situation/experience with passing of stones. Staying hydrated but wondering if it is related to electrolytes, etc. Just reaching out to the community. Thks

I ended up with a gallstone several years after my ileostomy operation. The surgeon removed the gallstone and then scheduled a gallbladder removal without any further complications.

Hi Riva,

Yeah, it sure is. Here's a 'cut and paste' that explains it well. Link will follow on bottom.

Regards,

Bob

How Ileostomy Promotes Stones

Water and Electrolyte Loss

The colon reabsorbs large amounts of water, sodium, bicarbonate, calcium, and potassium. When the colon is lost from surgery for cancer or inflammatory bowel disease, what it once reabsorbed is also lost into ileostomy drainage. The kidneys compensate as expected by producing a scanty and acidic urine low in sodium, calcium, and potassium. Kidney cells conserve filtered citrate and metabolize it to bicarbonate to help make up for ileostomy losses. Likewise, they produce copious ammonia, a way of removing acid from the body.

All these compensations supersaturate the urine with respect to calcium oxalate – low volume, and uric acid – low volume and pH. As a result, calcium oxalate and uric acid stones occur.

Does Not Increase Urine Oxalate Excretion

Much the same pattern of water and electrolyte loss occurs after the loss of small bowel from surgery or another cause. Losses are less severe when the colon remains in place because it can reabsorb some of what escapes from the small bowel. But the colon is affected in such a way that it permits abnormal amounts of oxalate to pass through its linings into the blood. As a result, urine is high in oxalate as well as scanty and acidic – so-called enteric hyperoxaluria.

Dehydration vs. Oxalate

This is a key point of distinction. Ileostomy causes stones and poses a serious risk of kidney injury from dehydration. Small bowel resection poses less risk from dehydration but more from excess oxalate excretion that can cause both stones and severe kidney injury. Ileostomy plus small bowel resection, therefore, causes extreme risk of dehydration, but the loss of the colon removes the source of extra oxalate. In other words, with or without associated small bowel disease, patients with ileostomy form stones because of electrolyte and water loss, not excess oxalate.

Link to full article: https://kidneystones.uchicago.edu/chapter-11-ileostomy-kidney-stones/

Hi Riva. I have an ileo and gallstones. My doctor put me on Bentyl and pain meds as I am not allowed to have any more surgeries due to excess scar tissue. I would say it's better tolerated now that I am on the meds. I still have issues with hydration. I need to drink more ORS - oral rehydration solution.

Hello Riva,

I believe Bob hit the nail on the head! I have had an ileostomy since my early 20's and was plagued with total uric acid kidney stones for many years. Thankfully, I was able to pass them, enduring much pain, and many times hospitalization for rehydration. Then, several years ago, one formed which was too large to pass and I had to have a renal stent placed for many weeks. It was extremely painful as I was supposed to lay around - which I could not do - and not walk around or do much of anything. I was so thankful when the day came to have the evil, intrusive thing removed and get some relief. I vowed to never have one of those stents put in ever again! I was then referred to a nephrologist, who worked together with the urologist, and they put me on Allopurinol. I can also take bicarbonate in water each morning but have not found the need to add that at this time. Although I will always have to be very careful to stay hydrated, this medicine has seemed to do the trick (at least for now...knock on wood!) I was always told that I would be prone to having kidney stones, after having the ileostomy surgery, for the very reasons Bob has listed above. I am living proof it is from the ileostomy because I have been eating a completely plant-based diet for almost seven years, consuming no meat or dairy, and even without the purines usually found in meats, my body was still able to produce total uric acid kidney stones!

Hopefully, working with your medical team, you, too, will be able to prevent any further formation of kidney stones in the future. I wish you the very best...hang in there!

Words of Encouragement from Ostomy Advocates I Hollister

Hi Susanna,

Check your inbox... it should be there! If not, just let me know.

Regards,

Bob

Hi Riva, I've had my ileo for 30 some years and have been plagued by kidney stones ever since. I had one stone the size of a thumbnail that caused infection and had to be lasered out. After that, my doc. said to drink a glass of lemon juice every day and I haven't had any problems since. Good luck.

Hi Riva,

Try eating a low oxalate diet. You can look it up and get a list of foods that are high and low in oxalates.

Hope this helps.

Elaine

Thank you.

Hi, I've had my ileostomy since Feb 2013. In early 2015, I started experiencing a lot of burning when I peed and noticed what looked like a million little gold pieces in the toilet. Long story short....KIDNEY STONES! For the past 5 years, I've been drinking 1 to 1.5 gallons of water a day. Rarely do I ever not drink this amount. I've tried apple cider vinegar and lemon juice, but neither made a difference.

The strange thing is I've never felt any pain. And I have passed some that were decent in size. I am grateful for this considering the horror stories I've heard from others.

Hi Osto,

Yeah, the pain does suck. I mean the pain when the stone travels from your kidney to your bladder. Once there you're mostly home free. I was concerned about how painful it would be going from my bladder to that itty-bitty hole at the end of my "you know what". But I never even felt it. Per my doc, I was straining my pee and one morning it just scooted right out into the strainer.....didn't feel a thing. Took it to work to look at it under the microscope........prickly little sucker. I think mine was around 5mm in diameter.

Later,

Bob

Hi Bob, what's the key takeaway from the article for someone with no colon, no other disease, just a straightforward ileostomy patient who does experience kidney stones? Hydration is key but also supplementing with electrolytes?

Hi Osto,

Well, from what was said in this article, the takeaway for you would be as you said... drink more water and add electrolytes. But that's the abridged version of what's really going on. When you get a straight ileostomy, part of your ileum (the last section of the small intestine that attaches to the large intestine or colon) is sacrificed to form a stoma. The ileum is the part of the small bowel that mainly absorbs water, bile salts, and vitamin B12. So when any part of it is removed or transformed into a stoma, you lose a percentage of your water-absorbing ability. Drinking more water doesn't do you any good if what used to absorb it is no longer there. So the way to stay hydrated in that case is to get the other parts of the small bowel to do the water absorption for you. This is a bit difficult because the other parts of the small bowel aren't designed to primarily absorb water... their job is to absorb other nutrients. So you have to trick those sections into absorbing water by combining what it does absorb with water molecules. This is where Oral Rehydration Solutions (ORS) come in. Without going into lots of detail, ORS is a combination of glucose, sodium, and water in the right ratios to be absorbed by the 2 parts of the small bowel above the ileum. When the small bowel walls, which are a semi-permeable membrane, see the right glucose-sodium ratio in a liquid, they allow that liquid to pass through the membrane and get absorbed by the bloodstream. By piggybacking water molecules on the glucose-sodium molecules, the water is dragged through the membrane with the sodium and glucose... and you get hydrated. Didn't think I'd ever get there... did you? So the real takeaway is to drink ORS with an ileostomy to stay hydrated (and keep your urine diluted so stones don't form). There's tons of info on ORS recipes and premade formulations on the web. The WHO is a good source for info... but watch the dates. They've revised their ORS formulations a few times, and you want the reduced osmolarity version... i.e., their latest version. If you need any more info, just shout.

Regards,

Bob

Hi Bob,

Thanks for your very detailed explanation of hydration. For the last month, I have been going through a dehydration issue. The hot weather, I guess, has been giving me a problem. I use the hydration liquid drops in my water, but they don't seem to do the job. The WHO is not my favorite organization, so wondering if you have a particular brand you find helpful, or if you have a homemade version you use.

Thanks for your help.

Elaine

These two products may be worth looking into. Most all "rehydration" products that I've looked at have pathetic amounts of sodium / Potassium. These 2 have quite a bit! I have no affilation blah blah blah...

LMNT Recharge Electrolyte Hydration Powder

https://www.amazon.com/Electrolyte-Hydration-Formulated-Artificial-Ingredients/dp/B07TT8B1JJ/ref=sxts_sxwds-bia-wc-p13n1_0?cv_ct_cx=lmnt amp;dchild=1 amp;keywords=lmnt amp;pd_rd_i=B07TT8B1JJ amp;pd_rd_r=8c47a2d1-2b13-477e-9b2d-5a8317b5d0af amp;pd_rd_w=PN5Qa amp;pd_rd_wg=xFyLn amp;pf_rd_p=13bf9bc7-d68d-44c3-9d2e-647020f56802 amp;pf_rd_r=0E8007STA7RW3EC8B5SC amp;psc=1 amp;qid=1596710229 amp;sr=1-1-791c2399-d602-4248-afbb-8a79de2d236f

H2ORS Electrolyte Drink Powder: Citrus (24 Pack)

https://www.amazon.com/gp/product/B00TT28P0M/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8 amp;psc=1

Thank you very much for the detailed response! I'm going to look into the ORS recipes now!

The article scared me a little bit with the talk of permanent damage to the kidneys when you have an ileostomy. I've had stones every single day for 5 years now. As I said in my previous post, I don't have any pain associated. And as long as I drink my gallon of water a day, they all pass through. And by midday (I typically drink 64 ounces by 11 am), if I pee into a container, I rarely see any.

I've had 2 - 24hr pee tests done. Ultrasounds. My urologist's only recommendation has been to keep drinking the gallon a day, add some lemon or apple cider vinegar (which I stopped...perhaps I'll start again!). I just worry that he's not treating me within the context of having an ileostomy. Maybe I should be put on those sodium bicarbonate pills like the article says?!

Hi Osto,

Yeah, I think you're right...I don't think your urologist is considering the context of your ileostomy. I've run into that problem a lot with doctors. Especially private practice docs. Many of them work on the unspoken "buddy system" of referring patients to each other despite any specific patient health challenges. You send me anybody complaining of stomach pains and I'll send you my patients with peeing problems....kind of deal. Sometimes all parties are top notch and you get good care.......but most of the time not. That's why I stopped seeing private practice docs and only go to the teaching hospitals or major university hospitals. Everyone is on staff in the same place and I don't have to worry about "insider trading" as much. They'll still cover each department's ass, but if you're on top of your own medical condition and know what's going on you can ask the right questions and get by just fine.

If you're having stones as frequently as you describe something is majorly wrong. The pH of your urine changes drastically (or should change drastically) throughout the day. But for you to be having constant stone formation your urine must always be conducive to stone formation. Get yourself to a better urologist that doesn't know your current doc, even if it's just for a second opinion, and then reassess. Best place to start would be with your gastro and see who they recommend. If your gastro is a private practice doc.......head to your nearest teaching hospital or university and get a fresh perspective.

Oh.....one piece of info that might help.......if you have your surgical report from your ileostomy (am I the only one who keeps such info?) bring it with you when you see your current and new urologist. If you don't have the report, call your surgeon's office and have them send it to you ASAP, and don't take no for an answer....you have every right to see it and own a copy. In the report, it will indicate how much of your ileum was chopped off to make your stoma. That should help your urologist figure out what your intestine is not absorbing and how that plays into your stone formation. He can then adjust what you're drinking to help fix the problem. Keep us informed as to how you make out. Stones suck.

Regards,

Bob

The "stones" I've seen on a daily basis are what I've heard others refer to as "sand". Extremely tiny and lots of them. If I don't drink anything all morning, then start slamming water (let's say 64 ounces within a couple hours), the first time I pee I'll see a lot. Then if I keep drinking (let's say another 64 ounces) I won't see any by the end of the day when I pee. There are exceptions where I've seen slightly larger stones (though still very small). And exceptions where I have not drunk my usual gallon of water during the day, checked my urine by peeing into a container, and not seen any. But...those are exceptions.

I've got my next 24-hour pee test scheduled, ultrasound, and consult with my urologist. And blood work that also tests sodium, potassium, etc. I'll respond back here with all the findings.

Thank you for all your advice so far!

Hello Bob. No one told me about ORS. Thank you. I think I have done ok because my oldest son owns a nutrition store and has degrees to go with it. I have been taking excellent vitamins, electrolytes, flaxseed, and fish oils, vitamin B12, D3, etc. for the 20 years he's been the owner. I might have just lucked out with a more knowledgeable son. How did you get so knowledgeable?
Thanks for the info. I'm going to look up ORS now.

Jeanne