Feeding tube nutrition suggestions needed

Posted by RW @nbkod7b, Jul 1, 2022

I can not open my mouth to eat or drink so use a g tube. Everything has to be ground with liquid in a blender so that it will flow through a glass cylinder that looks like a turkey baster. I am trying not to use prepared drinks except for Ensure Plus and Electrolytes. I need to gain some weight as I have plateaued so am counting calories but am having challenges finding high calorie things that can be added with liquids that go through the tube. There is only so much liquid I can comfortably consume. Breakfast is usually a cup of oatmeal or cereal with protein powder and some fruit with milk filling a six cup blender. Lunch is often four eggs and a cup of vegetables and water. Dinner is a cup of boiled chicken or fish and a cup of vegetables and broth. I have found the fat in meat clogs the tube. I often add peanut butter or ice cream but need some other options. I appreciate any suggestions.

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Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@lauraherbert It sounds to me like a feeding tube would be an extreme choice. If I understand correctly, you can swallow, correct?

My dad had a feeding tube because he lost the ability to swallow after a head injury and he had to relearn it. I helped him with him feeding tube. It's a messy thing punched though the stomach wall and it has to be cleaned and flushed. It can get infected or pull out and need to be surgically reinserted and you have tubing hanging off your belly with a clasp on it. The food is liquid canned drinks like Ensure or Boost that elderly people use because they loose too much weight. Those are usually available at the pharmacy section of the grocery store. If you can swallow, you could just drink some of those without a feeding tube. As nutrition goes, it is a lot of fats, carbs and vitamins and not really great nutrition.

Have you explored the possibility of food allergies as a cause? Perhaps taking digestive enzymes may help if you don't digest food well. Gluten issues cause inflammation of the gut if a person is susceptible and that actually may decrease the the surface area for digestion by flattening the villiae in the intestines. That is what happens with Celiac disease which causes malabsorption, and a gut may heal if gluten is taken out of the diet entirely. I did that. That requires research because there are so many sources of hidden gluten in foods. Basic food like meat and fruits and vegetables are good options as long as you avoid any grain with gluten. Corn and oats don't have gluten, but there could be cross contamination if there are some errant plants of wheat left over in a corn field from another season that gets scooped up during harvesting.

I have recently been through a lot of gut issues and pain, and it seems to have been caused by dairy products and also some physical issues with my pelvis that twists of out of alignment. Because that encircles the colon and large intestine, it can can cause pain and even constipation because of pressure. My physical therapist helps me with this. I do have other food issues and sensitivities as well as gluten and I have over time taken a lot of foods out of my diet that bother me. Have you seen a nutritionist? I even had a recent colonoscopy and the gastroenterologist took a biopsy to check for issues, but there were none. I had an ultrasound to check my ovaries because bloating and constipation can be a symptom of ovarian cancer. All of that was good, so I think my issues are food sensitivities and physical alignment of my body that I'm working on in PT.

The most calorie dense food is fat and if you are able to eat dairy, ice cream would be a way to get a lot of fat calories. Fats have about twice as many calories as proteins and carbohydrates. Olive oil is a heart healthy fat. Those are the 3 different types of food and most foods have a combination of them in differing proportions. Egg yolks are also a good source of fat with some additional proteins.

What suggestions have your doctors made, other than suggesting a feeding tube? Do any of my suggestions bring up questions that you would ask your providers?

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Because of my gut pain. I am on a fodmap diet. I find it hard to distinguish what food allergy I might have. But with no gallbladder high fatty foods don’t digest well.

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Profile picture for lauraherbert @lauraherbert

Because of my gut pain. I am on a fodmap diet. I find it hard to distinguish what food allergy I might have. But with no gallbladder high fatty foods don’t digest well.

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@lauraherbert I have a lot of food issues myself and determined what I could and couldn’t eat with an elimination diet. You can do that within your list of foods. For me, food can trigger my allergic asthma and it goes on my avoidance list. My elimination diet started with just one food, rice, then when that went well for a few days, I added another. You have to get inflammation down with whatever food is safe first before adding another food to it. It takes a long time to figure it out, but you can do it. I had to avoid all seasonings and spices to figure it out because often you don’t know what is in them. It is worth doing. Have your doctors suggested adding digestive enzymes? That would make it easier for your body to absorb if foods are broken down.

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Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@lauraherbert I have a lot of food issues myself and determined what I could and couldn’t eat with an elimination diet. You can do that within your list of foods. For me, food can trigger my allergic asthma and it goes on my avoidance list. My elimination diet started with just one food, rice, then when that went well for a few days, I added another. You have to get inflammation down with whatever food is safe first before adding another food to it. It takes a long time to figure it out, but you can do it. I had to avoid all seasonings and spices to figure it out because often you don’t know what is in them. It is worth doing. Have your doctors suggested adding digestive enzymes? That would make it easier for your body to absorb if foods are broken down.

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No they haven’t I am down to blow 100 pounds now. I’ve been in pain for two solid months without sleeping.
All I do is think of ways to end my life now
I see no point in going on if this is how my life has to be

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Profile picture for lauraherbert @lauraherbert

No they haven’t I am down to blow 100 pounds now. I’ve been in pain for two solid months without sleeping.
All I do is think of ways to end my life now
I see no point in going on if this is how my life has to be

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@lauraherbert, I see your situation has come to a point of despair. It is such a terrible cycle when pain prevents you from sleeping and sleep is what you need to have a clear mind to deal with your health issues.

A feeding tube may be a temporary treatment option. They are not always permanent. You might have home enteral nutrition, also called tube feeding, if you can't eat enough to get the nutrients you need. It sounds like your doctor is concerned that you are not getting enough nutrition and wants to stop the weight loss.

There may be other options and you may wish to ask your doctor more questions like:
- Why do you think a feeding tube is the best option for me at this time?
- What type of feeding tube? (through the nose or the stomach)?
- Do you consider this a temporary solution?
- Are there other things we can try before considering a feeding tube?
- Can you help me manage the pain so that I can get better sleep?

When is your next appointment with your doctor? Is your doctor a gastroenterologist (GI specialist)?

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Hi, I haven't seen any suggestions for dry milk. Dry milk can be mixed with a lot different food/liquid items. It may have more calories and protein than the protein powder you are using. It can be added to your oatmeal/cereal, broth, yogurt, milk, eggs, veggies, and Ensure Plus. It has like 30-40 calories in a Tbsp. I can't recall the protein amount. Take care

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Profile picture for lauraherbert @lauraherbert

Thankyou for your help. I truly don’t want a feeding tube. I had this extreme problem in 2021. Loss of weight, pain and fatigue. I had lost thirty pounds.
It took 9 months to get better.
They never did say what brought it on. But they found a stone and took my gallbladder.
So now here I am again only without a gall bladder. I do have diverticulosis but they said that isn’t what wrong now.
Although I was on antibiotics for diverticulitis 3 times in the last year. I beleive it left my intestines vulnerable to possibly anything. They did a colonoscopy but said nothing.
I studied about women like me. Losing 30 lbs with IBS. Found that it might me bile acid malabsorption . I’m trying the medicine for that now. Cholistyrime. Slept last notch for the first time without terrifying pain.so far all the help I have got was from studying and telling my doctor. The doctors are not help at all. 10 minute visits with them are worthless. I believe out medical system here is horrible.
So I-will wait on the feeding tube. Oh and get this they said Icould see a nutritionist in two months! Oh my gosh
If I’m alive then
Thankyou for your help
That feeding tube sounds really bad.
I hope sincerely you get the help and healing you need.
Sending hugs

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I have had a feeding tube for over a year now. It is not that horrible at all. If this is something that for now will help you along and make you stronger don't hesitate to get one . It has helped me a long a great deal as I still have difficulty swallowing. I have an extensive case of fibrosis in my neck from all that radiation.

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I have an appointment this week to discuss a possible feeding tube. I have been having terrible abdominal pain and nausea and losing weight, down 30+ lbs. Pain and nausea prevent me from being able to get enough nutrition in. I have had numerous tests and I had a partial gastrectomy 13+ years ago due to severe gastroparesis and they left an appendage with a blind loop. So one possibility is blind loop syndrome. I have been on pancreatic enzymes because stool tests show exocrine pancreatic insufficiency. I am very hesitant to get feeding tube but they asl want to use as a diagnostic tool to see if bypassing the remaining stomach and appendage stops the pain. I have just been doing my own research and am very worried about how this will change my life and manage day to day. Any tips and suggestions from those who have one?

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