Ileostomy Complications: Managing Kidney Health Concerns

Hi everyone! I have had my ileostomy for about a year and a half and I am still experimenting with different foods. Everything seemed to be going fine except for the mental acceptance that I will have this bag for the rest of my life :) This past April, after having my routine blood work, my doctor called me and said that my renal test results were in the danger zone. My potassium level was extremely high as were my calcium and sodium levels. She sent me to the emergency room for these levels were indicative of a potential heart attack. I felt absolutely fine, no palpitations or other symptoms. They gave me a hydration infusion and then sent me home. A CT scan showed a very tiny kidney stone in my left kidney. Since then, I have been extremely careful about what I eat and I increased my liquid intake. While my sodium and calcium numbers are now under control, my potassium level is still way too high. Now I live in fear of anything I eat and have resorted to reading labels of the food I purchase. My kidney doctor encouraged me to, of course, drink more. That's all I feel I do all day is drink, drink, drink.

Does anyone know of a way to reduce my potassium level? Any specific food, any supplements or medication to tackle this irritating and potentially dangerous issue? It's bad enough having the ileostomy but now adding kidney problems, I am totally frustrated and my list of doctors just keeps growing LOL. I would love any input or advice. Thank you in advance.

Your kidney doctor is an idiot. I'm sorry... did I say that out loud? Whoops!

He sees how high your potassium levels are and offers nothing... no suggestion to lower it except drink, drink, drink? 🤦‍♂️.

Doesn't even specify a specific drink? Like a lower potassium drink?

Well enough on this guy.

Seems you are holding up well.

Good for you. And welcome to the site.

You are in the right place... People will be welcoming you in and making suggestions.

You should know with an ileo you can dehydrate very quickly and this over time will cause kidney issues... therefore, drinking water helps but doesn't replenish vital nutrients you lose when emptying. So you gotta eat right and drink properly too.

A bunch of suggestions will follow. Sit tight. You are not alone.

I'm an ileo now 8 yrs... Just learning—the hard way too—about hydration drinks.

If you are a paid member, the forum above will give you access to topics on this... much faster... and accurate.

If not paid... no worries... a variety of suggestions and advice is coming.

Welcome again.

Cut out bananas and get a second opinion.

I'm with warrior; you need a better kidney doctor.

G-Day and welcome aboard.

As Warrior and Susan have said, get to a new doctor who knows more about hydration and the dos and don'ts of what to do. It's vital that you get the right information so you can feel better about your new situation.

Regards, IGGIE

You need to stop eating high-potassium foods, such as potatoes, all potatoes, all winter squashes, and milk, as they are high in potassium. No tomatoes either, as they are high in potassium. The vegetables you can eat are green beans, cauliflower, broccoli, asparagus, and there are probably others I can't think of at the moment. Let me know how you do.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

You can drink apple juice, cranberry juice, just stay away from the other juices. Like I said, regular milk you shouldn't drink. You can drink the non-dairy milk; it should be okay. Maybe somebody else knows more than I do. I have kidney problems and I'm on a low potassium diet.

Low

Low potassium diet!

Iggie is right! Key words here: "It's vital that you get the right information" - although the doctors think they have all the information/answers, many are incorrect and can literally scare the sh*t out of you... and for an ostomate, this doesn't take much!!! First step... start to investigate more and use your own good judgment - not just what the doctors say - no one knows our own bodies like we do (hmm... sounds like some good lyrics for a Taylor Swift song🎼🎤). ...jb

Broccoli is way high in potassium!

It almost killed me when I was on dialysis.

Broccoli is a half cup with 139 mg of potassium; eat it as a side dish.

I'm at a 3b and not there yet. I've just been taking high potassium food out of my diet. I have to read every package. Hope that helps.

I have an ileostomy and stage 3 CKD, but my potassium levels are always low, not high. I think that is due to the ostomy. I am not sure. My sodium levels are also on the borderline. However, my calcium, while normal, has been on the higher end of normal in my last 2 tests. I am wondering if I should avoid calcium. But that doesn't seem right either because you need it. I don't think you can avoid potassium altogether because you need some. But maybe don't eat bananas. And your doc is right: drink, drink, drink. It's one of the only ways to help your kidneys. You might ask your doctor if there is a potassium blocker you could take. I know there are phosphate blockers for people with kidney disease, so maybe there is a potassium blocker too. What does your doctor say other than to drink, drink, drink, or is that all he says? You do need to keep up your hydration. That is a very important thing. But I take potassium pills, so maybe I am not the best one to help you.

Foods to Avoid if you have high potassium levels:

Fruits
Apricots, avocados, bananas, cantaloupes, dried fruits, grapefruit juice, honeydew melons, kiwis, mangos, nectarines, orange juice, pomegranates, prunes, and raisins
 
 
 
 
Vegetables
Artichokes, beets, broccoli (cooked), brussels sprouts, carrots, potatoes (white and sweet), pumpkin, spinach, tomatoes, squash (acorn and butternut), and vegetable juices
 
 
 
 
Other
Bran products, beans (baked beans, lentils), milk, nuts, whole wheat pasta and whole wheat bread, chocolate, and salt substitutes

Foods to enjoy in moderation if you have high potassium: 

Fruits
Apples, berries (such as strawberries and blueberries), cherries, cranberries and cranberry juice, grapes, peaches, pineapple, and plums
 
 
 
 
Vegetables
Raw cabbage, cauliflower, celery, corn, cucumbers, eggplant, green beans, lettuce, onion, peppers, and zucchini
 
 
 
 
Other
White bread, coffee (limit to 8 ounces), noodles, white pasta, rice, and tea (limit to 16 ounces)

Medicine/Science is becoming more and more complicated, which means doctors/surgeons/scientists are becoming more and more specialized. Carl Sagan said years ago, “We live in a society absolutely dependent on science and technology and yet have cleverly arranged things so that almost no one understands science and technology. That's a clear prescription for disaster.”

Just as you joined this group, you will have to begin to learn more and more about your anatomy/physiology. In my life, my love was Electrical Engineering/Computer Science; I had no interest in life sciences like biology — there were doctors and others for those things. As medical issues began to accumulate, I realized that had to change. I was the only one that was aware of all my interrelated symptoms. I have had to become a General Contractor of sorts for my body — neurologist, neurosurgeon, urologist, cardiologist, ophthalmologist, gastroenterologist, WOC nurse, primary care doctor, physical therapist, occupational therapist, allergist, orthopedic surgeon, and general surgeon. Each of these are specialists I have to seek out and contact as the need arises. Luckily, I have not had to seek out an oncologist, but I may have to one day. I have become intimate enough with my body to know when to seek out which specialist. Another instance is how well Beth has come to know her body and adjust in ways unique to her circumstances. I have a very good primary care physician that helps me to determine what specialty/specialties I need to consult.

I point this out to say if you have identified a good specialist in a given area, don't be so quick to discard them because of perceived weakness in an area that may not be their core expertise. In the specialties I have listed, there is no doctor that is board certified in lots of these areas of expertise.

In your particular instance, I would seek out a dietician. You may ask your PCP, kidney doctor, or friends if they know a good dietician.

The value in a site like this is you get to hear numerous opinions/suggestions — no one solution may be perfect for you, but you may be able to synthesize different ideas to obtain a solution that works in your case. I have seen Bob and Warrior seek out various ideas on complex skin irritations they were having — they sifted through the ideas along with their individual research until they found something that worked for their unique situation.

You are an ostomate now, which means you will be dealing with situations that cross many medical boundaries. Eventually, you will become aware of the wonders your body continues to perform, enabling you to move away from being sad. IGGIE, as I paraphrase, is fond of saying he was 18 years late getting to the party.

Your post reminded me so much of my older brother.  He was an Electrical Engineer.  His wife suffered from diabetes early in their marriage and he immediately started researching information on diabetes.  I am convinced he saved her life many times - usually while she was in a hospital.  She lived well into her 70’s and there is no doubt he was the reason.  I so admired his unrelenting fixed intention to learn as much as possible to help her. 

I too admire your determination to learn and “go figure”….I envy this trait.

Sadly, we are not all blessed with this energy and determination to learn and research - this is why ostomates like you and wBob are total assets to this website…thank you for your posts!!!   jb

Incredibly well said! That is exactly the journey we are all on to one degree or another. Each journey is unique and some don't go as deep as others.

Personally I started as a chemist and disdained biology and life science. I used to say I liked "dead" chemicals because they behaved predictably unlike living systems. 

This unpredictability means we are forced to experiment on ourselves until we find a solution. 

Thank you much!  

I have ckd 3a so I know how hydration is important luckily my potassium and magnesium ok at the moment but have to be checked all the time and keep track off your deit any help would be appreciated I didn't realise how important it was to drink so much with a stoma xx

"many are incorrect and can literally scare the sh*t out of you... and for an ostomate, this doesn't take much!!! "

Thanks for that, Justbreathe. A little teehee is needed after all of the elation and/or disappoint of the last months.