Ileostomy and Kidney Disease: Seeking Advice and Experiences

Looking for experiences of folks with an ileostomy developing kidney disease. How do you all make the recommended CKD diet work for you? The list of foods (groups) will not be tolerated with my ostomy. (ex. Cabbage - just shoot me now!). I've also seen anecdotal reports of folks with long-term ostomies being prone to kidney disease. Looking for your experience, strength, and hope. Elizabeth.

The ostomy drains so much of the body's fluids that, after a while, the kidneys begin to fail.  For some of us, it's hard to keep up with just drinking lots of fluids.  But with respect to diet, I eat just about anything, including the cabbage that you mention.  You'll have to get with a kidney doctor (nephrologist) and figure out over time how much you need to drink per day.  

Well said by Henry. This news of kidney disease is quite a surprise to some with an ileostomy. It should not be, sadly. This is why we share and educate because the professionals don't tell you much.

The information, advice, and suggestions here can improve your life down the road. It's priceless.

Early prevention—know how—can help.

After 15 years of having an ileostomy, my kidneys aren't functioning as well. That's well known, but when I ask about it, the doctor shrugs. "It's not serious yet; it's stable," they say. I'm doing my best to drink enough fluids in the hope that my kidney function won't deteriorate further. A diet? I haven't received any advice on that yet. Perhaps I should look into it.

Like Henry said, lots of fluids. I drink about 64 ounces of water a day. So far, so good. I just pee a lot. I also eat whatever I want. However, I do stay away from anything containing corn or animal milk, especially before bedtime. I hate waking up in the middle of the night with a rock-hard bag!

Unlike Henry, I have only had my ileostomy for 3 years. I will never get near his 62 years. I can't imagine what it would be like to be 136 years old!!

Daniel

My Ostomy Journey: Kimberly | Hollister

entropygrl

Ileostomy here (5 years) and no doctor even mentioned kidney issues to me up front. In fact, the first person mentioning this to me was the surgeon's receptionist. As I was paying my bill, she said, “Do you know you have kidney disease?” Wait, what!?….the receptionist!!! Apparently, she noticed it in my blood test results.
On my next doctor (GP) visit, we discussed blood test results, and she mentioned my kidney readings were off. Nothing more was said.
When I was suffering from severe dry mouth, I mentioned this to my dentist. He suggested I may have Sjögren's disease. This led to another doctor visit and referral to a nephrologist. The extensive blood and urine tests led to my being thankfully cleared of Sjögren's.
Subsequent GP doctor visits and blood tests show CKD stage 3b. Beware of too much water; it can flush out needed nutrients. Then there is dehydration, so in the words of Jimmy Buffet, “There's a fine line between Saturday night and Sunday morning.”
I do try to drink hydration drinks, although I find it difficult. I love whole milk, and it is a great hydrator, but sadly a major gas producer as well. Watermelon and cucumbers are a welcome change. I eat them or make juice from them.
It seems as though, from my personal experience and from posts on this site, scar tissue may be more of a cause for a blockage than what we eat. So, not knowing whether our innards are sporting scar tissue, we are all different in terms of what we can eat.
As always, the best advice is to chew, chew, chew. Some of us “test the waters” when it comes to favorite foods, but it's a pass or fail test….jb

Hello entropygrl.
Thanks for this interesting topic, about which I know very little.
Last year, when I went for my yearly check-up, the doctor calmly informed me that I had stage 3 kidney disease – and I had had it for 3 years!
There was no other advice on how to manage it so that it was less likely to develop further.
Sometimes I wonder whether the yearly check is just a ‘tick-box exercise that is irrelevant in their scheme of things.
Anyway, it is helpful and useful to read some of the comments to your post, and I hope there are many more to improve my education on this issue.

Best wishes
Bill

Hi all, the last time I had a urine test was after a kidney stone needed to be removed by laser, and the urologist had me do the collection for 24 hours. He couldn't believe the low amount I collected, but he only said I better increase my fluids, including adding lemon juice to my water for the stones.

I have an ileostomy from February this year. Nobody mentioned anything about kidney disease to me until I went to an ileostomy meeting yesterday.

The people that run it asked me how my kidneys were. I was shocked, to be honest. But they were very informative. I will be talking to my G.P. about it soon, as coincidentally, I was actually at the doctor's earlier yesterday morning. I had woken the day before with pain in my back on the left side that started to spread to the front. My abdomen is very tender. My stoma is working fine, so that was ruled out, but he insisted on a urine sample. I await news on the results.

Best of luck to everyone.

Be safe and well.

Tony

I drink 99% water. I always carry a water bottle with me. As far as food goes, it has been a battle of what I want to eat and what I can eat. I ate frozen peas ground up for the first time a few weeks back with a big ham dinner. When I tell you those peas tasted like manna from the heavens, lol!! First time in two years eating peas!! However, it's a once-in-a-while food. After two years, I can eat a bit more of different types of food, but I also found if I chew a lot more and eat slower, I can eat more variety. But still - no fresh uncooked veggies. I try to stay away from sugar (I also have leukemia). I LOVE mashed potatoes and mac and cheese. It's mostly the healthy stuff I can't eat unless it is boiled or steamed down to baby food consistency, and even then, high fiber can be hard to digest. Like sweet potatoes!! Weird.

I would say drinking water without over- or under-drinking is your best bet for keeping kidneys working. A 16 oz bottle of water is two cups. Four bottles of water sipped through the day is 8 glasses. I personally didn't know that kidney issues affected ostomies.

I know you ruled it out, but it does sound to me like a blockage of some sort or even a urinary infection. I guess I'm lucky in that I can take or leave food. My mother burned everything, lol, so food was never important. However, my husband cooks like the greatest chef. I had my first rare hamburger cooked by him, and it was unbelievable. But in the end, I'm fortunate, I guess, to not be a foodie.

Good luck, and I hope it's nothing too serious.

Respectfully, I disagree with your suggestion to drink 8 glasses of water a day. For a normal human being, I'd agree 💯%. You should know the consensus here, as an ileo particularly, must drink fluids, not just water. The op sports an ileo.

If it works for you, note it as that.

Water doesn't hydrate. It will flush out everything you need vital, as an ileo. This adds fuel to the potential fire.

It's my 2 cents worth as an ileo of 9 years and what I have read from fellow ileos here who found out too late to just "drink water."

True dat…

Thank you very much for your reply.

I believe it's probably more urinary connected, to be honest. Waiting for the urine sample results and then the blood test that's coming up. Pain has eased a lot now, but the left side of my abdomen is still quite tender.

I drink a liter of water with dioralites in; I sip it throughout the day, but I also have around a liter of just water too.

They seemed quite happy with that.

Thanks again.

Tony

I'm currently in stage 4 renal failure… and well, that pretty much means my kidneys said I'm out. Lol I've been on dialysis for almost 2 years now. So I've been doing the renal diet for a bit.

My ileostomy was not the reason for my kidneys failing, but another issue altogether. But I can say that I have experience in balancing the two. 😆

The renal diet in itself is not fun or easy. There are so many no-no's due to phosphorus intake. But I would recommend, since you are not receiving hemodialysis treatments, that you can get away with eating more of the foods, like nuts, dairy, and so on. I would see a nephrologist and ask at this time in your kidney journey what would be best applied to your current situation. Trust me, until it's an absolute no on some foods, eat them while you can.

I have stage 3 CKD from acute kidney injury from having been dehydrated severely several times after getting my ostomy. It has been a scary thing for me. It is hard to eat correctly with a ostomy and CKD. The diets conflict. I get frustrated too with this issue. I try to find things that are ok with both conditions and sometimes that requires some work. I eat certain veggies, but I put them through food processor after cooking them. Mostly cauliflower and broccoli. I eat low sodium or no salt added canned veggies. Beets mostly. I can eat ice burg lettuce. So I have a lot of salads with lean meats. Chicken, turkey. You have to balance this with your electrolytes too. You want some sodium but not too much. I use a nutrition app to help me. it gives me a certain amount of fat, carbs, sugar, protein and sodium per day. And once I enter my foods and get to that limit then I know I need to stop. I can get three meals and a snack in and be under my allotted amounts. You can also set your amounts of each to make it so that you are within the kidney diet limits if you look them up online. The App I use is called NutraCheck. It's actually a diet app but it works for all sorts of reasons.