Living with an Ileostomy and a Feeding Tube: Seeking Advice

I have both an ileostomy and a feeding tube. This presents some problems in weaning off the feeding tube.

Is there anyone else who has had both and would care to talk about their experience?

 

Where is your feeding tube located? Mine was on the left side about 20 years ago for 7 weeks. My ileo is just 8 years old and is on the right side. What are your issues?

Since February of this year, I have had a feeding tube on the left side and ostomy pouch on the right side. The problem is that apparently my body has become so accustomed to the formula in the feeding tube that it prefers the formula over the food that I give it by mouth. In fact, the mouth food seems to be passed right through without being digested. At least that’s how it appears to me. So what will happen if I start to decrease the formula? Will the body finally make use of the mouth food, or will I just lose weight!  I’m still waiting for the dietitian to get back to me about this situation.

It is typical for some foods to look undigested coming from an ileostomy on a normal day. Tube feeding can tend to have a laxative effect and increase bowel motility. Passing actual food through the intestines helps to reduce shrinkage of the villi, which are the tiny hair-like structures of the small intestine responsible for absorbing nutrients. Hopefully, your dietician can take a look at your plan.

You are under the doctor's orders to wean off the formula? Or is this something you want to do yourself?

With my feeding tube, I could not eat anything solid at all. I had an esophageal stricture causing me to choke on even a corn kernel until they stretched that area in my throat. The feeding tube allowed liquids like Ensure to be digested.

I had no ileo then.

I'm glad you can eat by mouth. It seems you should be weaned off that tube. But again, doctor's orders? I hated my tube. It sometimes popped out and had to be manually reinserted.

Yes, it was not stitched. Held in by tape.

With an ileo, food will pass quickly so you have to eat bulking food if you can, to slow the process. People also use some medicine.

I eat bananas, marshmallows, and I'm good for bulking.

I'm looking into a dietitian too but was told she isn't ostomy educated. Big deal, she has certificates and her master's.

Duh.

Probably a waste of time.

But you have to follow orders. The tube will be coming out, and you will be right as rain, eating a normal diet hopefully. You do have to eat a bit differently with an ileo, and drink a lot to stay hydrated. Wait and see what your dietitian says. Ask questions. Get answers. I'd be interested in them if you relay them via posting.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

24 hours later... hey ho...!!! Just spoke to my Blue Cross Blue Shield health case manager, actually a dietitian, and no surprise, she can't help me. So, she will send a list of providers who can.

And I will give them a shout.

For me, it's about hydration because water alone isn't cutting it.

Then there's sugar and sodium worries too. Been hospitalized for dehydration twice this year. No fun. Film at 11. 😀

I kind of had what you have... Except I had to go on TPN for a little over a year. Every attempt trying to get it in the right position failed, so this was the only option they had left for me. Once I got to enough calories on my own, they took it out, and from there I did lose weight... Certain things do pass through really fast for me and watery and lack of nutrition was also a problem. I have an ileostomy, so that makes a difference too. One thing I would say is drink plenty of fluids to keep your kidneys healthy... and what finally worked for me was going on a high protein diet... Now, with that being said, not knowing how your overall health is like, ask the dietician what you should start off at... I was at 40 to 60 grams and that gave me back muscle mass within 4 to 6 months, which also helped kick start my kidneys back to normal (normal low stage 2 CKD) from stage 3B. And now I am at 70 to 100 grams per my kidney specialist. The most frustrating thing was I was told to eat what my stomach could tolerate in the beginning... add in different things slowly and see... After 2 years, I eat what I want and learned for the most part what will come out fast and what will take time. Even popcorn, lettuce, and mushrooms and some foods they say will/could cause a blockage... that I would slowly see if you can pass them okay... if you have further questions, I'd be happy to help with what I can... just message me if needed, especially if it gets too frustrating in the beginning.

Warrior... are you diabetic by chance? (only asking because of the sugar issue) I had dehydration problems and messed my kidneys up, and they had to give me IV fluids once a week. I've tried Gatorade, sugar-free drinks (Body Armour), milk (almond), lemon water. My dietician couldn't help me either. My kidney doctor got the ball rolling with the IV treatments and did the test for sodium. From there, I only asked the dietician for so-called healthier drink options instead of just water. I haven't tried DripDrop; at one point, I asked but was told they weren't sure if my body could handle it or not. I don't know if this will help you at all, but your GP should be able to help you. 😊

Good morning, Rose Bud. Where have you been, love?

It's been a while since I've heard from you. I see here you have had some situations to deal with and are moving on.

I am pre-diabetic, actually. My PCP mentioned this a month ago.

But you know, they can help a bit but don't really get the marshmallows thing.

Then find a dietitian who knows stoma output! I'm working on that. And hydration. You see how much sugar is in these sports drinks? Or sodium? Mercy!

I had needed electrolytes and in desperation, saw Gatorlyte.

Chugged a few bottles down during the day at work.

Zero sugar there but 500 mg of sodium!!?? WTF? Everything eaten that week tasted way too salty...duh. Drained that stuff in the sink. Nasty.

Yeah, you've got to read the labels... if you can. Talk about fine print! Barely readable. But ZERO SUGAR in big letters. Right.

We are supposed to balance salt, sugar, protein, fiber, etc., especially salt-sugar since we don't have the large intestine to help us out.

I found AmourBody drink as okay, and something called Prime.

About 2 bucks a bottle.

I just want to know what our normal specs are supposed to be in an average person and compare it to what we're missing, and how to get it back.

You seem to have had a fair run at a few drinks.

I also suffer from loss of taste since having my rectum removed. Strange, right? It happens.

So ice-cold water feels good going down, and those two drinks I just mentioned are good when on the go—road tripping.

And what's the idea behind all this? Kidneys. Don't need issues with that... thankfully no issues, but peeing is. Flomax to the rescue!

Hope this finds you well. Good seeing you back.

 

 

 

The sodium in Gatorade is your

electrolyte. The vitamins in Body Armour

are both needed to be zero. Prime, I've heard mixed things about—good and bad—so I won't drink it. If you go with

anything sugar-free, look for sucralose,

stevia, or Splenda. Anything that says "Diet" usually has one of the three. Just stay away from sugar alcohol, phenylalanine, and aspartame—those will give you digestive problems and the poop🐒💨💩. Those usually are in diet sodas and so-called sugar-free baked goods. Zevia (I think that's how it's spelled) is the only sugar-free soda that's okay to drink that I've found, and Lipton Diet Tea also has to watch the caffeine when you're dehydrated, and this one has a very small amount. I was able to drink up to 24 oz of coffee a day if I drank an extra 12 oz of water. Now, of course, everyone will be different, so I'm sure you've had blood tests, but this is what helped me, and I'm full-blown T2D, and my A1C for the last 2.5 years has been between 5.3 and 5.6—not even pre-diabetic—until my last test, which was 5.8 because I was sick on and off and trying to eat more, but my doctor's goal was anything under 7. So again, hopefully, this helps you some. And yeah, I've been MIA for a while, dealing with surgeries and recovering from multiple things the last 2 months or so, but I'm okay and hoping this will settle down for a while. Feel free to message if you need to. It can be a pain in the ass until you figure out how your body reacts to things, and I hope you don't become full-blown and can reverse it because it really sucks being on top and controlling it; most people don't, and that's coming from my dietician, GP, and kidney specialist. Take care. Oh, PS, the marshmallow thing doesn't work for everyone; the crap in it makes me 💩 more, but a lot of nurses and people on here say it works. Again, no one's the same. And peeing is or can be because of the diabetes; it makes you go more and gets you dehydrated, which can mess with your kidneys. My doctor told me I had 10 years for that to happen—wrong, only took 2 because of my ileostomy.

Weaning off the feeding tube was the dietitian's idea.

Hmmm, just curious, why is it your dietician that's trying to wean you off? It was my GP and GI doctor that told me when I could, and I had the dietician to help me with certain foods and suggestions. All I would get is "eat what you can handle" and how much I should be eating. Just wondering, but whatever happens, because eventually, they prefer you to not stay permanently on it unless you absolutely have to and there's no other choice. I wish you the best; it wasn't easy for me to figure things out.