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.

 

Chicken soup, low salt.

Electrolyte drinks.

Small frequent nutritional meals

Talk to your doctor. See a nutritionist.

With an ileostomy, you need to watch what you eat or there can be complications.

I do drink plenty of water and an electrolyte drink occasionally. I ensure I'm urinating and it's a normal yellow or clear, not dark orange or dry, which would indicate dehydration.

 

Coffee can make output very acidic, making the burns far worse. Caffeine can cause diarrhea where the stoma just keeps spewing for hours. Dried Chinese Crispy Noodles, Cheerios, or applesauce (peeled apples) or bananas are the exact opposite, a stool-thickening food. By mixing these with other foods, one can manipulate their stool output and counter the issues above. Also, the severe thickening helps in cases where one has severe diarrhea and is unable to reattach a new bag due to high flow.

 

Eating Guide

 

Partially copied from my nutritionist's guide. Ileostomy Nutrition Therapy from the Academy of Nutrition and Dietetics. (This handout may be duplicated for client education.)

 

My recommendation is to see a nutritionist for the full guide as not all can be pasted here.

 

I've added my own observations to further clarify.

 

Chew all foods well to the consistency of paste. Spit out any hard stuff you can't chew. Important!

 

Foods That May Cause Blockage (very bad, avoid!)

 

Apples, unpeeled (peeled and applesauce are excellent thickeners, don't eat the skins or the core, chew well)

 

Bean sprouts, Cabbage

 

Casing on sausage (inside fine if no tough parts, avoid swallowing if a chunk is felt). Also, sausage-like meats like pepperoni and salami contain indigestible bits.

 

Chinese vegetables (stir-fried crunchy, too hard, need very soft veggies with no skins)

 

Coconut, Coleslaw, Celery (avoid)

 

Corn (grits also, corn anything doesn't seem to dissolve in the stomach)

 

Cucumbers (skins bad, inside chewed up good seems okay, no seeds)

 

Dried fruit, raisins

 

Grapes, blueberries, etc. (skins and seeds are the problem.)

 

Green peppers (red, yellow also) pureed or very very small and soft seems okay in small amounts.

 

Mushrooms (don't dissolve in the stomach) pureed or very very small seems okay in small amounts.

 

Nuts (totally avoid)

 

Peas (mushy interior okay, like pea soup, skins a problem)

 

Pickles (skins a problem, inside if chewed up good seems okay, seeds not)

 

Pineapple (liquid okay, mushy parts fine, hard parts not, rather risky as parts of mushy may not digest)

 

Popcorn (totally avoid)

 

Potato skins, inside (no hard parts) fine.

Relishes and olives

 

Salad greens (diarrhea nightmare too)

 

Seeds and nuts (avoid) Watermelon seeds bad.

 

Spinach (doesn't digest, pureed perhaps)

 

Tough, fibrous meats (for example, steak on grill, well done, tough parts especially, over grilled chicken or dry pork chops. Juicy grilled or pan-fried chicken, shredded pork in juices, medium rare steaks, hamburger better. Nothing deep fried ever, diarrhea city.

 

Vegetable and fruit skins, (any avoid)

 

Whole grains (no grits, rolled oats oatmeal seems to be okay, oat cereal is an excellent thickener)

 

 

Foods That May Cause Gas or Odor

 

Alcohol, Apples, Asparagus (stink), Bananas, Beer, Broccoli (clog hazard)

Brussels sprouts (clog hazard)

Cabbage (clog hazard)

Carbonated beverages

Cauliflower, Cheese, some types like any cheese food is bad. Real cheese may be okay. Provolone, Swiss, Cheddar, not American white or yellow.

Corn (clog hazard), Cucumber skins and seeds bad.

Dairy products (toot city, small amounts okay)

Dried beans and peas (clog hazard)

Eggs (some don't digest in the stomach like scrambled or omelets, but over easy seems fine for some reason)

Fatty foods, Grapes

Fish (cooked unseasoned salmon in small portions may not, nor stink, same for raw tuna seems fine)

Green pepper (red and yellow also, clog hazard unless very small and very soft in small quantities)

Melons, Onions (clog hazard)

Peanuts (clog hazard) Prunes

Radishes, Turnips

Soda and sipping using straws, (drink from glass instead)

Seafood (smell rotten stink!)

 

If you're having a vacuum caused pancaking issue, a small amount of something above (like having a soda during a meal) could introduce some air into your diet and thus into the bag. Also, by avoiding too much thickening foods by themselves which often contribute to pancaking of the output.

 

Foods That May Help Relieve Gas and Odor

 

Buttermilk, Cranberry juice, Parsley

Yogurt with active cultures (Greek yogurt)

 

Foods That May Cause Diarrhea (looser or more frequent stool)

 

Alcohol (including beer)

Apricots (and stone fruits)

Beans, baked or legumes (clog hazard)

Bran, Broccoli, Brussels sprouts

Cabbage, Caffeinated drinks

Chocolate

Corn (in my experience corn anything doesn't digest in the stomach, just passed through and out, kernels/popcorn will clog)

Deep Fried meats, fish, poultry (KFC, supermarket rotisserie chicken very bad, and anything soaked in brine)

Fruit juice: apple, grape, orange (small amount okay)

Fruit: fresh, canned, or dried (small amount skinless okay)

Glucose-free foods containing mannitol or sorbitol

Gum, sugar-free, Licorice

High-fat foods, High-sugar foods

High salt foods (KFC, supermarket rotisserie chicken)

High seasoned foods (like blackened)

Milk and dairy foods (small amounts okay)

Nuts or seeds (bad, clog hazard)

Peaches (stone fruit, one skinless a day okay)

Peas, Plums (stone fruit).

Pork (chops, fatty)

Prune juice or prunes

Soup, Spicy foods

Sugar-free substitutes

Tomatoes, doesn't digest (soup okay) Turnip greens/green leafy

Vegetables, raw

Wheat/whole grains, Wine

Rice (very soft 1/4 cup in mixed in food okay, like in soup), refried beans (1/4 cup okay) pasta (one cup max).

Any foods soaked in brine or deep fried (rotisserie chicken, Kentucky fried chicken etc)

Solent nutritional meals.

 

Foods That May Help Thicken Stool

 

Applesauce (peeled apples, no cores)

Bananas, Barley (when OK to have fiber)

Cheese (processed cheese food a clog problem, use real cheese)

Dried Chinese Crispy Noodles (severe thickening, mix with other food that causes diarrhea)

Marshmallows

Oatmeal (when OK to have fiber)

Pasta (sauces may increase symptoms) (in my experience more than a cup of pasta causes diarrhea)

Peanut butter, creamy only, nuts clog (may make skin greasy)

Potatoes, no skin (skin clogs, more than a cup may cause diarrhea)

Pretzels (salty may cause more flow water consumption)

Metamucil, mix or crackers (mix in cup of water and drink before it gels up)

 

 

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

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 🙂

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 a high sugar and a 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 maximise 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 yur life Dumbo😲. ( jk 😋dude )but solid info.👍 Good read.👍 I gotta print this . 

Where the hell ya 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. 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 head first 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 everyday I appreciate my stoma more for forcing me to learn how my body functions.

You are the man.

A valuable asset here. Tha k u for sharing.

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

We all are grateful. I know I am having the 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 u kiddo. Knowing the others going thru it helps me. Am drinking whatever I can to stay hydrated.

Peeing like a race horse tho. 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. When 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.