Struggling to Stay Hydrated with Kidney Disease and an Ostomy

Not the drink. This is what I'm talking about 😉 I'm not sure about the costs to go to a "medical spa," but maybe your doctor can prescribe IV drips for you at the hospital. I think it's worth asking. 🫶

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I had IV fluids when I had my blockage. It was no fun because I swelled up, and my urine was still super dark even with fluids 24/7 for 4 days. I was severely dehydrated when I went to the ER from vomiting and from my ostomy producing high volumes of fluid. I never want to have a blockage again. I don't know that my doctor would prescribe regular IV fluids for me. She would just tell me to drink, drink, drink. That is what she says about my liquid output: to fix it with foods and Imodium, not to do anything else. I have a lot of liquid output and not very much even soft stools. Mostly just tea consistency or water consistency. I have been trying hard to drink more the last 2 days. So hopefully, I can keep that up. I have been drinking a bottle of water every time I pee when my pee is dark, which it has been lately.

Hi infin,

I'm not going to comment on your doc, as she's seeing the whole picture and I'm not... but if you seriously have no desire to drink even when you're dehydrated, then you need to be checked for something called adipsia. It's not common, but very real and is defined as follows:

Adipsia - A rare disorder characterized by the lack of thirst even in the presence of dehydration. In adipsia, the brain's thirst center, located in the hypothalamus, is damaged. People with adipsia have little or no sensation of thirst when they become dehydrated. These people must be instructed, even forced, to drink fluid at regular intervals.

It comes in a variety of flavors, so I suggest you check it out at the link below and maybe discuss this with your doc. This article explains it all pretty well, including how it's diagnosed.

https://www.findzebra.com/details/lq0v5Ao-adipsia?q=

;O)

Hi Clara! Pull up a chair! I've explained how us colon-less folks hydrate so many times on here that those reading this are probably rolling their eyes right now saying ‘no... not the hydration thing again!'. But if it helps even one of us, I'm going to explain it again!

The way we hydrate is to trick the small bowel into allowing water molecules to pass through the semi-permeable membrane that is our bowel wall. Normally, while the colon does the water absorption, the small bowel is absorbing primarily glucose (sugar) and sodium (salt) and other nutrients. When the bowel wall senses the correct ratio of glucose and sodium together, it absorbs it. If the ratio isn't quite right, the bowel tries to make it right by pulling what it needs from our bodies and mixing it with what's there in our small bowel. If it can make the ratio right... it then absorbs it... and if it can't, it won't. But it's not just the ratio of glucose and sodium we're concerned with... it's also the amount of water those two things are combined with. When the stomach dumps its contents into your small bowel, it's primarily in liquid form. So the sodium and glucose are being carried through your small bowel mixed with water. Most everything we drink is water-based, so not only does the ratio of glucose to sodium have to be right, but so does the ratio of those things compared to the amount of water that's carrying them through your bowel. Are you with me so far?

If you have the right amounts of sodium and glucose, but the amount of water carrying them isn't right, the body tries to fix that by pulling water from your cells and pushing it through your bowel wall into your small bowel to raise the amount of water that the sodium and glucose are contained in. Sounds good, but the body can only pull so much water from your cells in a certain amount of time. And what's in your small bowel is constantly moving down the bowel toward your bag. So if your body can't pull and dump enough water to get the ratio right while this stuff is moving through your small bowel, then none of it will get absorbed. If we had a colon, it wouldn't be a big deal because the colon would simply re-absorb the water and send it back to the cells it came from. Sort of a ‘no harm, no foul' sort of thing. But for us, all that water just ends up in our bag (along with the glucose and sodium that couldn't be absorbed). But if the amount of sodium and glucose and water is close to what the bowel wall needs... and the body can make it right... we get the water back through our small bowel. So our bowel wall is like a lock, and the key is the right combination of glucose, sodium, and water. Get that right and the membrane that is our bowel wall does an 'Open Sesame' and sucks up the glucose, sodium, and WATER! That's how we get hydrated.

But wait... if the body had to pull water to dilute the mixture... we're not getting as much water absorbed as we can, since some of it was already in us to start with. So the trick is to give the small bowel exactly what it needs, so it doesn't have to pull water already in our cells to get the mixture right. If we do that, the small bowel wall will simply open wide and suck it all right in... including the water! Have your eyes glazed over yet?

Ok, so what's the magic formula??? Well, it's 20-25 grams of sugar (glucose) combined with 6-12 grams of salt (sodium chloride) mixed in 1 liter (quart) of water. This combination is called an Oral Rehydration Solution (ORS), and is what the World Health Organization distributes to people suffering from severe diarrhea. That's because people suffering from diarrhea have their colon inflamed to the point it can't absorb any water (from food poisoning or nasty water). So drinking an ORS allows them to re-hydrate without using their inflamed colons. And if it works for them... it'll work for us too.

Once you understand what I just explained, you can see why drinking drinks loaded with sugar cause us to dehydrate. And drinking just plain water or sugar-free drinks robs us of essential glucose and sodium. So if we don't drink stuff that's the right ratio to pass through our small bowel's inner wall... we're doing harm to ourselves.

Making ORS is easy and can be made with anything... as long as you keep the glucose, sodium, and water in the ranges I gave above. Half a 12oz can of Coke... or any non-diet soda, is about 21 grams of glucose. And ½ teaspoon of salt is about 6 grams depending on the type of salt you use. The rest can be regular water, seltzer, club soda, etc... so the possibilities are endless.

Now one last thing. Saying the colon does ALL the water absorption is a bit of a fib. The very end of the small bowel also begins to do some absorption, but the bulk of it is done in the colon. So the less small bowel you have left... the more important drinking ORS will be to you. Also, as Iggie mentioned, our small bowel will adapt over time to try to compensate for the colon having left the building. It can't fully compensate, but it does learn to absorb more as time goes on. Understand that I've seriously oversimplified the whole absorption process here, so if you want to learn more, or just get a more exact understanding of what goes on in this whole process, there's lots of info online... and I can point you to it if you'd like.

So... the bottom line is 20ish grams of sugar and ½ teaspoon of salt (about 4 or 5 salt packets you get at any restaurant or fast food place) mixed in a liter/quart of water or sugar-free anything... and you're golden. If you can't do that, then the closer you are to it, the better. Any questions, just shout!

;O)

Hi Clara, I thought this was an interesting comparison of the small and large intestine:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6571163/

Without my colon (end ileostomy), my small intestine does most of the work to stay hydrated.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Infinity, I'm also an ileostomate. It's great that you have a kidney specialist on your team. For hydration, I live in a seasonal climate, so all things are relative for me—humidity, temperature, etc. I am so excited that summer is almost over since fall means I can get my normal routine back and go outside more. So, with all things relative, instead of tracking what goes in, I track what comes out—with all the research out there, all we are left with is (without daily blood tests) what color/clarity is your urine? The goal is a light wheat color (assuming you don't take B vitamins, and I think beets or something change urine color). Since you don't enjoy drinking water, consider "eating your water." This is a term Dana Cohen, MD, came up with. Check out her book for tips on hydration, which include finding potassium and nutrients in fruits. I also cannot eat many veggies, so I drink green smoothies in the morning after eating something light. For some reason, I always crave salt in all things, and all salt is not created equal (according to Cohen). So salt from Lays potato chips vs. sea salt on an avocado with (good fats) will either be a -/+ in trying to stay hydrated. When I'm active, I try and schedule stuff after 11:00 am when I'm finally hydrated after sleeping. Of course, I still have to go to work, but I'm just talking about trying not to sweat too much before 11:00 am, i.e., I don't run or work out in the morning, except for a light yoga stretch routine. Also, in the summer when it's too hot to go outside, it's doubly hard for me to stay motivated—to drink consistently when my body is not moving. I've noticed the less I move, the less I want to drink. I know it's a catch-22. So I hope you can find a middle ground where you are moving a little bit, eating your water, and if you do try and drink water in the morning, add lemon or electrolytes (I use Nuun, it can get expensive, 40 cents/cup/tablet).

I have found that coconut water almost always unplugs me after too much fiber. I love the flavor... especially with pulp!

Thank you, Bob

Some of us would like to learn more and get a more exact understanding of what goes on in this whole process, so, yes please, I for one would like you to point to further exposition... a pre-sifted good resource would be greatly appreciated.

Best wishes to all

Jayne.

Wow, thanks for the info. I too am an ileostomate and had to read through this twice, but it makes a lot of sense.

Thanks

I do like coconut water but I have to have it without pulp. I try to find drinks that will appeal to me. I really do try.

Thank you for these suggestions. When I go to the gym, it is always after lunch, so midday. It gives me time to hydrate and also get fuel from eating. I find that when I go to the gym is when I do my best hydrating. I can drink a 32 oz bottle of fluid after working out. When I am doing less, I drink less. I do check my urine, and it varies a lot. I know when it is getting really dark that I am getting dehydrated, and I try hard to drink more then. I take a lot of medications, and my doctors blame it on that. They say I can't tell if I am dehydrated by my pee. But the truth of the matter is I can, because on a good day, it's almost clear. And on a not-so-good day, it isn't. So it can't be the meds doing it. I hate the summertime because all the heat doesn't help. I can't wait for fall to get here. Then I can go walking outside, and I can enjoy nature more without sweating all my fluids off. It is also more fun to go to the gym when I am not going to come out sweaty into heat that is going to make me more sweaty. I went to walk around the pond the other day, and the swans are gone. There was a family of swans there; I guess they flew away already. The babies were about at that age. I was sad they weren't there anymore. I did have a nice walk, though. It was hot, and I did get all sweaty, though. And I know when you sweat, you have to drink fluids. I try to drink a mix of water and electrolyte drinks like Gfit, which is lower in sugar. When mixed with water in equal parts, it reduces the sugar even more but still keeps the flavor. I do like a little flavor in my water. I do drink plain water, but I am not very motivated to do so. I have heard water alone is not the best hydrator anyway. So I am trying to drink more drinks with electrolytes in them. It is hard when you just don't think about it, though.

I have an ileostomy, and I have struggled to stay hydrated not only because of high output but also because my surgery entailed taking out 1/3 of my small intestines and 20% of my stomach. Now, if I drink or eat too much, my stomach hurts extremely badly. When I was hospitalized for dehydration and they thought my kidneys were damaged, they gave me the UF Health ostomy reduction protocol that I will share with you here:

Requirement: Accurately record liquid intake and ostomy output. Make sure that during the protocol below you are drinking more than output. 
 
AIM: Intake needs to be 500 ml per day more than the output. Ileostomy output needs to be less than 1500 ml/daily. Whenever the above aim is achieved, stop the protocol below. 
 
Follow protocol strictly and stop if AIM above is achieved. 
 
Start taking 15-30 grams of fiber daily. Wait two days and proceed if AIM not reached. 

Start taking Loperamide/Imodium, 1 tablet three times daily and wait two days and proceed if AIM not reached. 

Take Loperamide/Imodium 2 tablets three times daily. Wait two days and proceed if AIM not reached. 

Take Loperamide/Imodium 2 tablets four times daily. Wait two days and proceed if AIM not reached. 

Start taking Lomotil (prescription) 1 tablet three times daily. Wait two days and proceed if AIM not reached. 

Take Lomotil 2 tablets three times daily. Wait two days and proceed if AIM not reached.

Re-evaluate and add Cholestyramine if needed. Wait two days and proceed if AIM not reached.

Re-evaluate and add tincture of opium if needed. 
 
Please keep a journal and record your intake and output.

What's not clear in the protocol above is that you're supposed to continue doing the previous things in the protocol whenever you continue to the next step. For me, it requires taking 2 Loperamide plus 2 Lomotil (it works best if taken 30 minutes before meals), and again at bedtime, in order to keep my ostomy output below 1.5 liters per day. This means I should be drinking 2 liters of liquid daily (which is extremely challenging to do without pain because of my smaller stomach). My doctors told me to avoid drinking plain water because it will rob my body of needed electrolytes. They said if I don't want to make my own hydration solution, then I should drink Gatorade G2, because that's the closest thing to the homemade solution.

Right now, I have a midline IV port and get a liter of 0.9% sodium chloride solution daily to help keep me hydrated, but they're taking the midline out Tuesday and I'll be back to struggling to get enough fluids orally. They keep telling me my stomach is fully healed now and should be able to handle it. We shall see…

May I please have the recipe for that watermelon drink? It looks delicious!