Struggling with Appetite and Nausea Post-Ileostomy

I am having a really hard time eating. No appetite. Had ileostomy Oct 17. Gone from 138 to 115. Surgeon put me in the hospital Oct 26. Said I was extremely dehydrated. So nauseated all the time. Original colostomy was Oct 2023. Anyone else have no appetite and nausea?

Yes, absolutely lost appetite. No nausea though.

I'm set up differently than you...well, partially since you're wearing a temp ileo waiting for the connection to heal as your colostomy was taken down. You are in the healing process which all sounds good on paper.

In real life, you lost taste of food, but I think that's temporary. I lost taste. It's called ageusia, as having rectum removed.

A few of us ileos suffered that fate. Some said their taste came back.

So far, for me, it hasn't yet. And this past October 2024 is 1 year.

Now, when you have no desire to eat, it's one thing. But to stop drinking? A lack of thirst with an ileo? It's serious. Force yourself to drink proper fluids.

Dehydration will cause kidney failure. Some on here didn't know this until much later on.

It sucks, the lack of information we are given after surgery.

Only to find out later, damage is done.

I'm informing you, not scaring you here. Okay? Talk to your doctor, surgeon. Get people involved.

Take advantage of your membership here—the members have been through it all. Some much worse than others. Ask. Write questions and we here will help guide you. Okay?

Lacking hydration gives you low blood pressure. You can face plant—faint.

You can develop CKD—chronic kidney disease. I can name 3 members who just found out they have it from their posts here.

You aren't out of the woods yet since you were hospitalized.

Think of it in "parts" or chapters.

You are at part 1 of this journey.

I noticed you also opened another topic on deciding to finish the connection...or not...or maybe having second doubts? All good thoughts.

Only you can make that decision. There are people here that will advise you on their experience as suggestions. Just do your research. Ask.

Do you have help at home? Having a second person with you at doctors' appointments really helps.

There will be suggestions of a stoma nurse too.

You will be alright. Ask questions. Take notes. This is the best place to help you through this life-changing event. Welcome wagon on way. Come hitch a ride 😉.

 

 

You can take something for nausea. I took Zofran for like 3 months after I had my ileostomy and again after my relocation surgery. I had a lot of nausea. Sip liquids. Don't chug them. Sip throughout the day. It's very important you don't get dehydrated. You don't want what happened to me to happen to you. I had acute kidney injury from dehydration. Now I have CKD stemming from it. You don't want that. Trust me, you don't. 

Hi. Yes, you were number 1 of the 3 I mentioned above. I am not naming names. Hoping others, like you, chime in. Real people. Facts.

 

Hi, a lot of us have struggled with appetite after surgeries.
My GI doctor told me to take Zofran multiple times a day to try and avoid feeling the nausea—but that was after we had ruled out the things he could do something about…

For me, what I know is that after so many years of getting sick nearly every time I ate, my brain sees food as an enemy.
I do better with foods I didn't eat much over the time period I was the sickest.

When my sodium is low, I feel nauseated. I keep these on my nightstand, in my purse/diaper bag, always travel with them, etc.

https://www.amazon.com/SaltStick-FastChews-Electrolyte-Replacement-Rehydration/dp/B09J1MZSDH/ref=mp_s_a_1_3?crid=3H8J00S9SEBYY&dib=eyJ2IjoiMSJ9.vETtCLBA8fb2xyjQzPEnXCZXz_QRAgTM-ZFrpy1yFd08sYct8mqIl1AimcwtzYEbe8sEE9evlBw6xdQebsnYmXzXr8js5ddHXCX_8c6G0ULM1A5Jp3n9cl26PIHqS70t4wwkLCafWO0eppG4G6b6_ylk82JSgYnxAZ-a5e9CSG7en02_-kx_bq1O60J2gw9BPTqQat4hP6SJnNE-ZHJuww.6iouPFJfhHEfSsfa6mTM4nSG53074V-DZT8jH1Lkbm4&dib_tag=se&keywords=saltstick+electrolyte+fastchews&qid=1734566673&rdc=1&sprefix=saltstick%2Caps%2C141&sr=8-3

These are a better way for me to get the electrolytes than by drinking a lot when I'm feeling nauseated. A lot of the time I feel better. With other health issues going on, I would check the ingredients to make sure they're okay for you 🙂

Living with Your Ostomy | Hollister

Hey there,

After one of my ostomy surgeries, I had dropped down to 98 pounds and I felt so nauseous I couldn't even take a bite of food. I couldn't even stomach the smell of anything, not even a cracker. A week and a half after I got home, I finally ate ice cream and then I literally lived on ice cream for 6 weeks. I had nothing else but ice cream; it was the only thing I could eat.

I think "cold" helps. Tap water, for example, was disgusting. But ice-cold water was great. Weird. Strange. But factual.

Low B.P., the dizziness. Man, that beginning of recovery sucked for a lot of people, I bet. And who knew? Right? Were any of us told this would happen? Big stamp NO.

Extreme dehydration causes nausea. Water is not enough to keep you hydrated.

Sports drinks are not designed for clinical use as oral rehydration products, and they often have high sugar and lower sodium content. You may have heard of Liquid I.V., but it is best suited for mild (general) dehydration. For severe dehydration, the W.H.O. (World Health Organization) has a rehydration formulation referred to as an Oral Rehydration Solution (ORS). ORSs have four main constituents:
  • electrolytes
  • a bicarbonate source to correct or prevent metabolic acidosis
  • water to replace fluid losses
  • a carbohydrate source to maximize fluid and electrolyte absorption.


An ostomy can have a profound impact on your body's ability to absorb water and stay adequately hydrated. This effect is even more pronounced if you have a high-output ostomy—an ostomy that produces more than 2L of effluent per day. A high-output ostomy can have a dramatic impact on your quality of life and mental health. It can also lead to problems with weight loss, low energy, low muscle mass, difficulty absorbing nutrients, dehydration, electrolyte imbalances, and kidney stones.


ORS should make up most of your fluid intake. Keeping track of your fluid intake is important. Recommend drinking at least 30mL/kg of total fluids per day, more if your output is higher. Two-thirds or more (66%) of your fluid intake should come from ORS. So, for example, if you weigh 70kg (154lbs), then you should aim to drink at least 2100mL of fluids per day, with 1400mL of fluid being ORS. Generally, for those with high ostomy output, it's recommended to limit water intake to a maximum of 1L per day. On top of this 1L, you can drink about 500mL of juice, tea, and fluids that aren't oral rehydrating solutions (ORS). Any further fluids should come from ORS, keeping in mind the two-thirds rule.


I use TRIORAL Oral Rehydration Salts. The TRIORAL formula is based on the World Health Organization (WHO) oral rehydration formula. For safe and complete hydration, they are pre-formulated individually sealed powder packets. Just mix with water and drink — one packet makes 1 liter of solution. The TRIORAL Oral Rehydration Salts are inexpensive and convenient packets of pre-formulated salts/sugar when mixed with water will rehydrate your body fast, regardless of the cause. Since they contain no artificial sweeteners or flavoring, you may want to squeeze a lemon, lime, or orange to taste. I use "Kool-aid Liquid" in mine (4 squeezes per liter of solution).

I, like you, was admitted into the hospital with extreme dehydration, nausea, and no appetite after having lost 100 lbs. First and foremost, get the dehydration under control and keep it there — dehydration can kill. My wife called 911 and forced me to go to the emergency room because she was not going to let me die at home on her watch.

Smart woman. She saved your life, Dumbo😲. (jk 😋dude) but solid info.👍 Good read.👍 I gotta print this.

Where the hell have you been, man?

My daughter has been applying to MD-PhD programs, which involves lots and lots of essays. My wife and I have been her reviewers, looking for logical, grammatical, and typographical mistakes. It took up a lot of time and was very interesting reading. I have degrees in physics, electrical engineering, business, and computer science — none required that I take a biology course, and I never did. I have learned more about the digestive tract/system since my ostomy than I have in my entire life. I am an obsessive reader, and I dove headfirst into learning as much as I could about living with an ostomy — several books and hundreds of articles. While in the hospital, I was constantly grilling my surgeons — one even suggested that I go back to college since I was asking more insightful questions than his med students. Warrior, one thing I am sure of, I will not be going back to college 😂🤣. I do enjoy learning, and every day I appreciate my stoma more for forcing me to learn how my body functions.

You are the man.

A valuable asset here. Thank you for sharing.

There are few others on here with degrees and well versed in human activity.

We all are grateful. I know I am having good people on our side on this incredible site for our journey. Blessings.

Yeah I have been through a lot with dehydration. I have learned the hard way.

I feel for you, kiddo. Knowing the others are going through it helps me. I am drinking whatever I can to stay hydrated.

Peeing like a racehorse though. Ha ha.

Yeah, I, too, had bouts with loss of appetite and some nausea. Went down to 80+ lbs. Lately, I have an appetite, but can't find anything I want or can get. I get nauseous on occasion, but I bull through. Stupid, I know. Guess that's me.

I know that's true. The more you drink the more you pee. But at least it's clear or almost clear. Not dark and sick looking.

I am  learning.

I'm 3 months post-surgery, still fatigued, loss of appetite, and slightly nauseous all the time (I'm a chef, so it's a bit of a problem). Even not interested in a glass of wine! Is this normal?