Dehydration and Loss of Appetite After Ileostomy Surgery

Hi all, I am new to this site. I had an ileostomy three months ago due to my sigmoid colon being stuck and dead. And I had a prolapse. Ever since my surgery, I have been in the hospital for 8 weeks. The first three weeks, I had complications right away; my stoma inverted and got inflammation. They put me on TPN, and I got more complications. I ended back in the hospital. I was not eating or drinking anything, so they put in a feeding tube down my nose. I was seriously dehydrated and started having kidney issues. Then I ended up in the hospital again for severely dehydration, so they took out the feeding tube. I am still not eating and drinking. I eat maybe one meal a day; I am not hungry for the rest of the day. Am I supposed to be feeling this way? The doctor keeps on doing blood work every two to three days, and my kidney numbers keep going up, so he gave me IV fluids at home. I don't think it helps. I really appreciate any advice. Thanks.

I am so sorry that you're going through this. I'm pretty new here too. I got my ileostomy at the end of April. I spent three weeks in the hospital and another three weeks in a rehab facility. I'm home and have a wonderful home care nurse who takes care of the open abdominal wound. Luckily, I haven't had problems eating, but I do need to really make myself drink enough water each day. Hopefully, there will be people here that can help you with the issues you are dealing with and give you some tips and advice. I hope you will feel better soon.

Hey Micky. Welcome.

I was in the same exact situation as you, without the inverted stoma, though.

That changes a lot of things, but I will focus on the hydration issues and lack of appetite because those affected me.

I should say I had an ileo first in 2016. And it was only after the removal of my colon in 2023 and sewn-up butt that I began suffering hydration issues.

I'm assuming you don't have a colon. Nor a butt hole, correct?

The reason being you hydrate from your colon. When it's gone, you have to supplement big time—all the time.

If not, kidney issues follow.

My first impression with a recessed stoma you have is the surgeon's fault. You need that relocated or pulled through.

You will have issues with that until it's fixed properly.

Most here will agree on that.

Hydration is not just water. It's varied liquids with electrolytes. Are you familiar with this?

You do have to force yourself to eat and drink, no doubt about that. But it should get better.

I wasn't eating or drinking at all because everything tasted like cardboard. Then ice-cold water tasted better. Then I found liquid IV supplements: sugar, salt, magnesium. Everything you will forever need as an ileo.

Hope this helps. Just ask. We got your back or front. 😄

Hi Micky,

Were you in a teaching/research hospital?

Did a dietitian see you while in the hospital? I won't see a dietitian unless they specifically work with GI patients. Once we've gone into the realm of no colon, our dietary needs can differ from the general population.

After your most recent blood work, what did your doctor say about the kidneys?

Don't stress about the amount you are eating right now; getting your electrolytes balanced and hydration is the bigger issue at the moment.

How do you feel about protein shakes? Smoothies?

Your body has lots of healing to do, and protein really helps.

I go through this every time I stop eating for a while. It is like my digestive system gets lazy, and I find it difficult to even swallow food because I wouldn't have saliva. I usually start with small stuff, mainly sugar and carbs: candy, sweets, and gum to stimulate saliva and make me hungry. Juices and liquid supplements, too. And slowly I go back to normal. It is not a very healthy approach, but it works for me.

Words of Encouragement from Ostomy Advocates I Hollister

G-Day Micky,

You have to drink like your life depends on it, because it does.

Welcome... you are going to have to force yourself to hydrate. It doesn't have to be only water. Try to stay away from caffeine as it pulls the water from your cells.

It is normal after surgery not to feel like eating; you almost have to force yourself to eat. I'm sure doctors have already told you that you should be drinking around 2 liters a day. Don't drink just plain water all day; drink other fluids like tea, coffee, milk, or Coke, etc.

If you don't want to end up with chronic kidney disease, you need to drink plenty of fluids. Electrolyte drinks are the best thing for you. Get some Pedialyte or something. Or some DripDrop drop-ins. Trust me, you don't want to end up like I did with stage 3 kidney disease from dehydration and acute kidney injury. As for eating, try eating small amounts throughout the day, even if you aren't hungry. Snack on crackers and cheese, or peanut butter or bananas. Things like this will help your kidneys too.

I agree with starting my snacking throughout the day. This might stimulate future eating. I also found some CBD gummies with some Delta 9 (made by Cornbread Hemp) that helped my appetite (chemo caused my lack of appetite).

And hydrate, hydrate, hydrate. Along with the other suggestions, try popsicles occasionally just to mix things up.

Thanks, it does help. Drinking is very hard for me as I am used to drinking very little.

I had my surgery done in Columbia Hospital, NY. I had blood work done yesterday; she said my kidney levels are still high. I need to drink and eat more. I am also on medication for eating since they took me off the feeding tube and PICC line. This medication is causing nausea and dizziness. I saw a dietitian in the hospital, and when I came home, she did not offer me any suggestions; it was a waste of my time.

Micky,

The medication you are taking for eating… meaning to get you to eat? Is it making you too dizzy or nauseated to eat?

Do you have any sodium or salt restrictions with what is going on with your kidneys?

Does your insurance allow you to go to the provider of your choice?

I understand. You are used to drinking very little daily, but you need to change that. This is going to be your new normal. And with kidney disease lurking around the corner, you don't want that.

Your body has a drastic change.

My dad gave me a good piece of advice when I was about 10 years old, when it came time to brush my teeth. He said, "Warrior, son, if you ignore your teeth, they will go away."

It's meant to give me an appetite to eat, and it's causing nausea and dizziness.

Yes, my insurance lets me switch doctors of my choice. I did switch to a new surgeon and team now.

Well, that's no good if it's causing those symptoms. Is it a medication you can stop whenever you want, or do you need to wean off it?

I can't stop it whenever I want.

Micky, so you need to wean off it?

Are you able to reach out to the ordering provider and get a weaning-off schedule? 

How do you feel about ginger chews?

I was in the hospital for five days with the ostomy creation surgery, then home for five days, then back in the hospital as an emergency for dehydration. I was drinking, but it was going into my bag and not through my kidneys. This was ten years ago - I was very poorly indeed, but I got better with medication, and so will you. It's a dark tunnel, but it isn't endless. I wish you all the very best.

Hi and welcome to the site. Thanks for your encouraging message. You've found a great place here, full of wonderful, caring people.

So far, there is no relief from dehydration and kidney issues. My numbers keep going up and down. The doctor wants to put me back on ton with a PICC line. So fun.

My appetite is still not better; it's been three months since my surgery.

Have you gotten off the medication that is causing nausea and dizziness?

No, I did not. She added even more refills to this crappy medication.

Micky,

Did the physician give refills after you explained the side effects and not seeing an increase in appetite?

Are you able to take Zofran to help with the nausea?

Yes, I did tell her. She just said to continue taking the medicine. Then she said to do a reversal; it might help with all your symptoms.

Yes, I am taking Zofern.