Struggling with Dehydration and Calorie Intake - Need Advice

New to this, having a problem with dehydration and taking in enough calories. Any suggestions?

Eat and drink more. Lots of small meals and drink a variety of fluids. You have to force yourself sometimes. Maybe take some medication to slow your output, but I don't like to recommend anyone taking medication if they don't have to.

Hi M,

You need to tell us why you got your ostomy and what plumbing you have left. How you solve your problem depends on what you still have and if it's functioning properly.

:O)

Try OstoAI for more info and old posts, 'Hydration'.

Welcome to the site. I remember having to force myself to eat and drink more. One suggestion is to try to add Boost or Ensure a couple of times a day. This is in addition to your meals, not as a replacement.

Words of Encouragement from Ostomy Advocates I Hollister

Dehydration with ileostomy is a problem. For me, trying to hydrate enough (copious amounts of drinking water) merely lowered my sodium levels and did not help. What I have learned so far from this site and docs is that fiber is necessary. I am talking about powder-type fiber. I put 2 teaspoons in a smoothie each morning. It thickens output, which I believe has helped with my dehydration problem. JB

Hi M,

Rereading my reply, I didn't mean to come off as terse. It's just that this subject has been covered so often on here, and there is no one answer that covers everyone. The reason why your ostomy is important is because the type and amount of bowel you have left will determine how you have to hydrate. Search on here for 'hydration', 'hydrating', 'ORS', 'oral rehydration', etc., and you should find more info than you want.

In a nutshell, your colon does the majority of your water absorption. Your small bowel can do a little bit towards the end of its run, but its primary job is nutrient absorption and bile re-absorption for recycling. If your colon is no longer in the game, there will be no way for your small bowel to absorb water, and it will just end up in your bag (minus the small amount the end of your small bowel may be able to absorb). So by drinking water to stay hydrated, all you're really doing is flushing the nutrients out of your small bowel before the bowel walls can absorb them and diluting your bile in the small bowel so your nutrients can't be broken down small enough for the bowel walls to absorb and stressing out your gallbladder. A double whammy, if you will. If you're missing your terminal ileum (the part at the very end before your ileocecal valve and where your colon starts) as well as your colon, then your bile can't be re-absorbed, which not only fills your bag with bile (and all the water you can't absorb), but works the crap out of your liver to make more bile that you just flushed away. Ileostomates should always monitor their liver function for this reason, because if your liver goes tits-up, it's game over. If you're a colostomate, things are much better in terms of hydration. Having even a third of your colon intact can provide the necessary surface area to reabsorb a lot of water, unless what's left is diseased.

So you can see that depending on what plumbing you have left, and the condition it's in, will make or break hydration... at least by the normal means. But all is not lost if you're an ileostomate, even if your terminal ileum is long gone. You just have to change how you hydrate and 'trick' the small bowel into absorbing water along with what it normally absorbs. That's a topic unto itself, and I gotta rock... so if that's you, just search the forum for the words I wrote above. If you come up empty, just shout. I've written on this subject just shy of a million times, so I doubt the other members would mind if I did it once more. Just can't do it now.

Regards,

Bob

w30bob… GAWD I'VE MISSED YOU!!! Glad you are back and thanks for this explanation - makes more sense to me than any doctor visits I've had recently. I just went through a bunch of tests for kidneys - apparently my numbers are too high, blah, blah, blah, and it appears I have stage 3b chronic kidney disease. Is this serious? I'm not sure… There's a doctor for everything, and the right hand doesn't know what the left hand is doing, and the people of the world, insurance companies, and Medicare are just forking over the $'s… for all these tests leading to more tests and more doctors and more questions that go unanswered.

I do not know what parts I have left after my emergency ileostomy surgery and resulting stoma. This is my own fault. In defense of my surgeon who was planning on my reversal, I was on vacation and had to return home to a new surgeon. Circumstances (heart attack, etc.) halted me in my tracks in a follow-up reversal plan for well over 6 months. Now, because I feel well both mentally and physically, take no medications, and have distrust issues with the medical profession along with my age factor, I choose happy and stumble along to resolve the small issues that pop up from time to time. Basically, I have found, at least for myself, no doctor appointments make for happy days, weeks, months, and who knows, possibly years. Pain will be the only thing that will interrupt my life in Denialville. Thanks again for the info, and having to repeat useful information is kinda like fishing if you are a “catch and releaser” - when you catch one and throw it back, it may have learned an important message, and you feel good about it. jb

I have a colostomy and short gut syndrome - always dehydrated. My team has me drinking Liquid IV 45-64 ounces a day in sips and limiting other fluids. Gatorade has too much sugar, which pulls water out and can cause liquid stools. Fake sugars can do the same. No caffeine, no juice (unless cut with water). Imodium 4 times a day. I still have to go to the infusion 2-3 times a week for IV fluids.

Why is your dehydration important? Liquid stool? Short gut? Diet? Not drinking enough?

Hi Kas,

I'm short-gutted too, but try to never be dehydrated. I started out on TPN and IV hydration, but weaned off that in a year and never looked back. The home infusion company you use can make all the difference. If you still use one, let me know and I'll turn you on to the best company out there. And I mean hands down the best. But I assume you're off TPN and eating normally... well, normally for us. And that you've read Carol Reese Parrish's book on Management of Short Bowel Syndrome, right? If not, you can find free downloads online easily or get the actual book for free here just by signing up (also free);

https://www.shortbowelsyndrome.com/sign-up

I've found all her advice to be correct (except what she says about bowel adaptation), but since everyone is different, some of what to do may need some tweaking. I just can't do the 'small sips all day' stuff, and after working outside or working out, I need to DRINK, not sip. I've learned to temper my thirst cravings, but they're always there just waiting for me to be weak and succumb. I've found the best way to successfully hydrate is after my bowels are mostly clear of food and nutrients. It's a simple surface area issue. If there's food jammed into all the villi of the intestinal wall, there's no way any liquid can get past that to be absorbed. I'm talking ORS here, as water can never be absorbed by itself. I've learned to stay up very late, as I need more time to absorb nutrients than a normal person, so I rehydrate every night before I go to bed. I start drinking a liter of ORS around 2:30 am and do it within 30 minutes. If I'm feeling sporty or had a real rough day in the heat, I may go for a full liter. I have no output after that, as it all gets absorbed, and usually hit the hay around 4:30 am and bounce out of bed again around 8:00 am. None of this happened overnight, and I had to train myself to stop eating around midnight (so my bowels were clear by 2:30 am), as well as the staying up late part. On very strenuous days, I might take a power nap for an hour around midnight, but other than that, there's no issue. My point is you have to not fight your body, but adapt to it and how it now functions. You'll need to figure that out with experimentation, so take good notes. But you can get there. If you need more info or want to chat, just PM me. But make sure you read Carol's book... it really is a game changer for folks like us. I've put the chapters of the book on here in the past as well as the link above, but sometimes using the search is a futile waste of time. Sorry Admin, but it just is.

Reach out if you need more help!

;O)

Due to my chronic dehydration (high ileo), I am having some kidney pain, and the doctor has ordered a kidney ultrasound and prescribed IV hydration twice a month. I haven't found a place except the ER to do this locally.

One participant said what I feel about trying to drink enough and not flush out your electrolytes. Even drinking an equivalent of Pedialyte, I am still not well hydrated. The doctor even spoke to me about putting in some sort of port for the IVs if I begin to need it more than twice a month.

Hi and thank you for the information. I just joined and ordered the book. I've been off of TPN since October but still have the port in my chest for probably another year or two because my colostomy was due to rectal cancer and they don't want to remove the port until they're sure it's ok to do so.

Hi JP,

I'm guessing you don't have a central line (PICC line) installed? If you did, your insurance should pay for a home infusion company to provide IV fluids for you to do yourself at home. The port is one of those mixed blessing things. If you have a central line in your arm or leg, then losing that and switching to a port can make things a lot easier, as you won't have the line ends dangling and it can't be pulled out. But infection is always looming, and ports provide an even shorter path to your heart if an infection does develop, so you really have to stay on top of your port care and not hesitate to hit the ER if you suspect something is wrong. Some do really well with a port, some not so much. A lot depends on the amount of body fat you have, the thickness of your skin where the port is installed, and the skill of the installer. Most of the time they install it up near your collarbone, and if your skin is thin it will protrude a bit and can be chronically sore in that area. They're a better long-term option than the PICC line, or so I'm told, but there's no free lunch, as usual. I had a PICC for a year and didn't really have any major issues with it. My mom had a port and she hated it. Most docs will tell you it's the other way around, so research it a bit before you decide.

Your best bet is to properly hydrate and give your kidneys a break. Hydration drinks like Pedialyte are not the optimal formulation for ostomates. They're better than hyper and hypotonic drinks, but they tend to miss the mark because they're formulated for kids, so they have the correct amount of glucose (sugar) but only half as much sodium (salt) to make it palatable for the little ones. You might want to read the book I recommended to JP above, as you'll find that once you understand how to trick the small bowel into absorbing water when it's absorbing sodium and glucose, your hydration problem will go away. Even better, as time goes on and your bowels adapt, you can train them to absorb more diluted concentrations of ORS and ultimately hydrate with pure water. It's a lot of work and not for those who aren't playing the long game, as it's taken me almost 8 years to do, but it can be done. I can even hydrate with milk, but I have to really be on top of my game and paying very close attention to what and when I eat and what my bile situation is. But the point is you can get there from here if you know how. Sadly, most docs and even dieticians don't. But as more folks suffer the fate of our poisoned food supply, the number of ostomates will continue to skyrocket... and that will change. But unfortunately, as luck would have it, we're all just a little ahead of our time.

;O)

Bob

Get electrolytes into your routine! My ostomy dietitian recommended Liquid IV and DripDrop. I only need DripDrop once or twice a week now, but in the early days post-op, I used it once a day. I also keep Kinderlyte on hand, which is sort of my “emergency” ration. If I get so dehydrated I feel faint, I throw that in my water bottle.

My most favorite product for staying hydrated or rehydrating, that's not flavored and loaded with sugar or Stevia 🤢 is Keto Chow drops. I put some in my water almost daily. I have an ileostomy, so dehydration is always a huge concern. This has actually kept me out of the hospital for IV fluids. I found mine on Amazon. Calories, lately this has been an issue (never in the past), and I literally just bought a 6-pack of chocolate Kate Farms organic plant-based nutrition drink. I haven't tried it yet, but reviews were promising. I'm not a vegan, it just happens to be plant-based.