Struggling to Stay Hydrated with Kidney Disease and an Ostomy

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infinitycastle52777
Aug 09, 2024 5:49 pm

I have like zero motivation to hydrate. I don't know why. It seems like the only time I hydrate well is after a workout at the gym when I usually drink about 32 oz of fluid. However, in my daily life, I just don't think about drinking. I find that time passes and I haven't drunk anything. I do drink a little at meals to take my medication, but it's not enough. My dietitian has been hounding me to drink more and that I am going to become dehydrated due to my ileostomy output being so liquid and my not drinking enough. I know it is important to drink, drink, drink, as my kidney doctor says every time I see him...I have stage 3 kidney disease besides having an ostomy... so any helpful advice? No sarcastic answers, please. I know "just drink something" is an answer someone is bound to give. I mean some real helpful advice. I have a 32 oz bottle with time markers on it for drinking by the hour, but it is just sitting in my fridge, not touched lately. Why do I not feel motivated to take care of this health problem? When I drink a lot, I feel all ick in my tummy. And like I am going to have to go to the bathroom every 5 minutes. But I have noticed my urine getting darker and darker. So I know I am not doing a great job of hydrating. When I brought it up to my GP, she passed it off, saying it could be one of my medications making my urine darker. But I know better because I have seen it clear or almost clear when I am hydrated. So, it was of no help to talk to my GP about it. And my dietitian just gets upset with me. Like now, she is telling me I need more protein in my diet because that will thicken my output. But I am not big on protein from meat. And she said whey protein doesn't count. So protein shakes are out. And I can't eat a lot of veggies. Because I have a very sensitive ostomy and it doesn't like stuff. A lot of stuff, actually. Sometimes even chicken comes right back out, undigested. So I am sorry this is a kind of woe is me post. I am really just looking for some ideas. Constructive ideas.

Morning glory
Aug 09, 2024 6:16 pm

Hi Infinity, I think you already know the importance of hydration. You don't want to end up back in the hospital. You don't have to drink a lot in one sitting. I sip throughout the day. You don't have to drink just water. Any liquid that isn't caffeine will do. Jello is good, broth, etc. I hope you will take care of yourself.

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Justbreathe
Aug 09, 2024 6:40 pm

This sounds just like the issues I have. I have never been a drinker of water or anything for that matter. One exception - happy hour beverages, which are dehydrating, never seemed to have a problem drinking those! Like you, I have no interest or need to drink urges. I gave it a serious try and ended up drinking too much water and flushing my system of sodium - my bad - it took me a while and lots of salt to recover from that! I have purchased all sorts of dehydration support products…again, if you don't drink them, they won't work. Many give me a rather upset stomach as well. I too have been told I have stage 3 kidney failure. I have no answer for you as I have failed at everything. However, what I have found most helpful in addressing too much liquid output is… each morning I drink a smoothie… I put in it:

1 banana

2 teaspoons of psyllium fiber powder (Psyllium Fiber Sugar-Free Powder - Orange flavor)

1 scoop of protein powder (Orgain Organic Protein)

8 oz. of vanilla almond milk.

I find it to be a good 10 a.m. snack.

The end result is thickened output. Good luck with finding a drink that actually makes you want a drink… if you find one, let me know. Even my beautiful watermelon drink has not encouraged me much. jb

 


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AlexT
Aug 09, 2024 6:48 pm

 


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I get lectured all the time about drinking fluids because 1) I love soda and 2) I don't drink enough water. I know I need to drink more, but I'm not thirsty. 🤷‍♂️ Guess I'm just a bad boy. 🤭

Justbreathe
Aug 09, 2024 6:53 pm

Alex... We've known that all along! What are you going to do when they come for you, bad boy? 🎶🎶🎶🤣

 

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

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infinitycastle52777
Aug 09, 2024 7:56 pm
Reply to Justbreathe

I have had issues with my sodium level too, but not from drinking too much; it's from the medications I take. I have tried a lot of different drinks and electrolyte drinks, and none of the flavors seem to appeal to me. One of them, a water drink called Splash, has a grape flavor that tastes like grape Kool-Aid. I was not impressed. I have tried Propel, G Fit, Gatorade, Body Armor, Body Armor Lyte, and Gatorade Zero. Those little drops you put in water. Electrolyte powders, which I find too strong. I will try a smoothie in the morning. Maybe that will be a good place to start.

infinitycastle52777
Aug 09, 2024 8:00 pm
Reply to Morning glory

I do know the importance of hydration. I don't want to end up back in the hospital. That is why I am completely frustrating myself. I just want to tell myself to get with it. I just don't even think about it. It's not like I intentionally don't drink; it just doesn't occur to me until it's nearly bedtime, and I don't want to drink a lot before bed. I wish I got really thirsty. That would actually help. I even tried eating crackers, thinking the salt would surely make me thirsty. It didn't. I don't know. Maybe I am hopeless and will get a wake-up call one of these days.

infinitycastle52777
Aug 09, 2024 8:02 pm
Reply to AlexT

That is just it, I am not thirsty. I don't feel like I need a drink at any time of the day. That is how the day goes by, and then I realize I haven't drunk anything, or hardly anything. I think I am going to try the smoothie idea, just to see what that might do. Maybe it would be a start.

Justbreathe
Aug 09, 2024 11:39 pm
Reply to infinitycastle52777

Yep - I've tried all of those too and feel the same way - so I totally understand your frustration. I do like the Liquid I.V. Lemon Lime even though I don't like lemon or lime. The problem is - it doesn't like me; it seems to upset my stomach. I put it in a water bottle and sip at it, but many times at the end of the day, I throw some of it out. Keep me posted if you find one you like…jb

kittybou
Aug 10, 2024 1:32 am

Have you tried a snow cone machine yet?

They should be going on sale soon. I found mine at Walmart. I do not get thirsty, but a snow cone is water.

I put tropical punch powdered mix and sugar to make a snow cone. They sell flavored syrups, with sugar and without sugar.

w30bob
Aug 10, 2024 6:35 am

Well, I have to say this is a very disturbing post and replies. I'm not even sure where to start. If kidney disease isn't motivation enough to get people drinking, I'm not sure what is. It's not reversible, and if/when your kidneys fail, you die. It's as simple as that. They do transplant kidneys, but there's a waiting list and no guarantees the anti-rejection meds will work for you. Not to mention that transplanted kidneys don't last as long as your own, so you're on borrowed time no matter how you look at it. It sounds like some of you know how to hydrate, and some still don't. We've covered this a million times on here, so I'm not going to go through the whole thing again, but simply put, you hydrate through your colon. If you have no colon or it's disconnected, you won't hydrate the normal way. No matter how much water you drink. Drinking water will actually make it worse, as it will cause your bowels to pull sodium and electrolytes out of your body to try to dilute the water you can't absorb anyway, and you dehydrate even faster. Soda is mostly water and hydrates just fine, you just have to deal with the added sugar unless you're drinking diet soda. I'll just say if you truly have no motivation, and dying isn't a good enough one, have your doctor install a port or PICC line in you and get IV hydration at home every night with a TPN pump. It's that important. Or have your doctor set you up at your local infusion center every couple of days for IV hydration. You're fooling with fire, and you're going to get burned. And you know better. That's sad.

;O)

kittybou
Aug 10, 2024 9:56 am
Reply to w30bob

Thank you. A little explanation goes a long way with me. :)

Justbreathe
Aug 10, 2024 11:28 am
Reply to w30bob

I

Oh, I have so many things I could respond to regarding your post... but first, I must say... you are absolutely right in terms of dehydration and kidney issues! If you had been my doctor, I could have saved lots of cash and grief. Between Google, this website, and a large dose of common sense, I feel I have successfully lived to a ripe old age, thus far, of 80 years and 11 months... through very little help from the medical field. Could I have chosen the wrong doctors in every bit of my journey over the last 4 years? I think not... I now take full responsibility for my lack of self-participation in research... many of us are like lambs to the slaughter and put too much trust in what the doctors say and prescribe without evaluating our own bodies and situations and possible "fixes"... enough said...

"I don't get nearly enough credit in life for the things I manage not to say."

― Meg Rosoff, How I Live Now

I do feel your posts are most helpful, and thank you for your contributions - but again, we are all different and have our reasons for the things we do or don't do... respectfully shared... jb

IGGIE
Aug 10, 2024 12:05 pm

Bob is 100% right, it's now up to you all to see the light, or it will go out.

aTraveler
Aug 10, 2024 3:45 pm

It seems staying hydrated is the price those of us who never liked water have to pay. 😉 Every other day, I drink a 20 oz bottle of Gatorlyte—I get 4 different flavors to keep the drinking interesting. I also keep a 64 oz liquid container next to me, filled with ice and water. The container keeps the liquid cold for two days. When I take my medicine, I take one or more swallows. Every time I change my pouch, I take multiple swallows. I snack on bananas to keep my effluent semi-solid; while snacking on a banana, I take several swallows. Finally, while watching TV, I take swallows during each commercial break. By following this regimen, I never get to the end of a day without drinking much water. On typical days, I drink between 64 - 96 oz of water. As I stated earlier, every other day, 20 of those oz consist of Gatorlyte. You can pick your beverage of choice along with your preferred events to drink. Since I am a creature of habit, this routine works for me.

infinitycastle52777
Aug 10, 2024 5:32 pm
Reply to Justbreathe

Yeah, some electrolyte drinks are hard on the tummy. I have found that too. Also, Blue PowerAid gives me blue output, which is harmless but funny. My ostomy is weird about dyes. It doesn't really process most dyes. I am still looking for a drink that I actually like that isn't caffeinated. I like coffee, but I don't drink it too much. I like a drink called Bai that is a fruit drink, but it has caffeine in it. Weird for a fruit drink, but it does. I don't like most Gatorade drinks. I dilute most of those sorts of drinks with water, but then I never end up drinking much of them.

infinitycastle52777
Aug 10, 2024 5:34 pm
Reply to kittybou

I used to eat snow cones when I was a kid. My grandma had a Snoopy snow cone machine and I thought it was great fun. I haven't had one in my adult life though. Something to consider. I got the Pedialyte ice pops but I don't really eat them.

infinitycastle52777
Aug 10, 2024 5:38 pm
Reply to w30bob

I didn't find this very helpful. Thank you for your time.

infinitycastle52777
Aug 10, 2024 5:45 pm
Reply to aTraveler

I do try to drink every time I empty my pouch because I read you should drink one cup of fluid every time you empty. I don't always do this, but I try. From what someone else said, water is not the best way to hydrate. So, oh well for that. I mix water with electrolyte drinks. Water is good for a person; it just has no flavor.

w30bob
Aug 10, 2024 7:41 pm
Reply to infinitycastle52777

If ileostomates are going to drink Gatorade (regular, not sugar-free), the correct formula is to split the bottle into two equal parts (easy if you have a second empty Gatorade bottle...so save one). Add 1/2 teaspoon of salt to each bottle and fill them to the top with water. Give them a good shake, and you have a properly diluted oral rehydration solution that your small bowel will absorb and hydrate you with. Gatorade, as it comes in the bottle, has about twice the sugar you need and not enough sodium (salt), and will cause your small bowels to extract water and sodium from you to dilute it. Within a few days, you'll get used to the diluted taste, and normal Gatorade will taste too ridiculously sweet to drink.

Another tip for hydrating is to eat more fruit. I freeze all mine because it's summertime, and there's nothing more refreshing than frozen cantaloupe, honeydew, blueberries, peaches, raspberries, or oranges when it's hot out. The dog loves them too!

Now get hydrated, people!

;O)

ClaraD
Aug 10, 2024 9:23 pm
Reply to w30bob

Hi Bob

I found your reply super informative and interesting. I have one question though. You wrote, “You hydrate through your colon; if you don't have one or it's disconnected, you won't hydrate the normal way.” As someone having a TAC coming up, I'd like to know, how does one stay hydrated without a colon if the colon is what hydrates us?

 

infinitycastle52777
Aug 10, 2024 9:53 pm
Reply to w30bob

I drink more Gfit than I do regular Gatorade. Gfit has less sugar and fewer calories. I never thought about adding salt to it. I thought it already had salt in it. I dilute Gfit the same as I would any other drink. I dilute everything with water. I will consider adding salt to my drinks. I can't eat very many fruits without digestive issues. My ostomy doesn't like fruit. I can eat bananas and that is about it. Except for fruit in baby food pouches that is pulverized. That is how I get most of my fruits and veggies. I ate some mango the other day and got the most awful stomach pains and then the next morning my ostomy had spit out all the mango into my bag. And they were small pieces of mango. I don't want to have those pains again. Ever. If I ever dare to eat mango again, I am going to purée it. See if that can be digested.

Thanks for the idea about salt. If I drink any Gatorade, it will be the Zero form. Zero sugar.

Mrivera8
Aug 11, 2024 1:21 am

Have you tried IV hydration? They usually promote them for hangovers, but they're pretty great for anyone dehydrated. I went to a place called Restore Hyper Wellness, which is not a medical facility but a "medical spa" 😆 so insurance doesn't cover anything and, unfortunately, it's not cost-friendly. If it's something you can afford to splurge on every so often, I'd recommend it… after asking your doctor (I didn't ask my doctor, but I admit I can be dumb 😅).

infinitycastle52777
Aug 11, 2024 9:05 am
Reply to Mrivera8

Do you mean Liquid IV, the hydration drink? I have tried it, but my ostomy nurse did not recommend I use it due to the sugar content. She wanted me to drink Pedialyte, but I am bored with that as there are limited flavors that don't have red dye in them. I couldn't afford to go to a spa of any kind. I am on a limited budget. It is very limited. But thanks for the idea. I am glad you were able to go. I'd love to hear more about that. It sounds interesting.

kittybou
Aug 11, 2024 9:28 am
Reply to w30bob

We started freezing cantaloupe for a snack. My dog adores it!

IGGIE
Aug 11, 2024 1:25 pm
Reply to ClaraD

G-Day Clara, the colon does extract water better than your small bowel, but that's why with an ileostomy we have to drink more liquids. We also need more salt as well.

Bob has given a good hydrater using Gatorade and mixing it 50/50 with some salt. Over time, your small intestine starts to extract more water, but we have to keep up the levels. I personally drink 2.5 liters a day = 85 oz for America. Regards, IGGIE

AlexT
Aug 11, 2024 6:45 pm
Reply to IGGIE

I'd pee 24/7 if I drank that much.

 


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ClaraD
Aug 11, 2024 10:14 pm
Reply to IGGIE

Thank you, IGGIE, this does seem like important information I should know. I appreciate your time once again!

IGGIE
Aug 12, 2024 1:02 pm
Reply to AlexT

Then pee 24/7. It will flush your kidneys out as well. How much do you drink? IGGIE

IGGIE
Aug 12, 2024 1:04 pm
Reply to ClaraD

G-Day Clara, when is your operation? Stay with the group and keep us up to date. Regards, IGGIE