Adult feeding tube placement consideration. Questions!

rmotion

New member
Wow Gretchen how timely your post. I have been re inspired recently to really embrace my G-Tube and not for the obvious reasons. This is a long post so I will split in two.
<br />G-Tube Advantage
<br />"Let food be your medicine and Medicine be your food" Hippocrates
<br />
<br />
<br />For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight lazyness or just being overwhelmed with just having to deal with a chronic illness . The prevailing concept in managing CF is to eat high carb and high fats, basically throw enough crap at the wall and something is bound to stick. This might be good for calories and works for some for the enlightend health minded minority this is not the case. if you do not have the understanding of how health and nutrition are so simply woven together that in the future advanced medicine will be nutritional medicine.
<br />
<br />Now obviously Cf is so complicated and difficult to deal with and for doctors to treat that we need both sides to dovetail together the best traditional medicine and the best nutrition if we are going to have a chance at surviving.
<br />It seems that there are several new drugs that could really help us, I am hopeful but guarded with my anticipation. We all have been down this road before. But now I do see some more hope on the horizon and I want to stay as well as possible. Bring on the G-tube Advantage.
<br />When I first had a G-tube placed and did tube feedings at night, within 2 years I gained almost 25 pounds. Well worth the hassle and placement. I was amazed that I gained weight but then stopped using it over the years. I got tired of having it and had it removed. I later got sick, lost a lot of weight and needed more calories so the G-tube was replaced. I used it to gain weight but still struggled with using it and the concept of using it, I had now developed diabetes and many food allergies. So finding a formula was difficult and also when I did the tube feedings it seemed to spike my blood sugars and I would feel blah most of the time afterwards. Well those formulas, while serve a need and are necessary for some, I found I had more success with my own home made formula that was based on whole foods and balanced nutrition. It has made a big difference.
<br /> The greatest thing with a G-tube blending system is you can eat anything, anything that you can stick in a blender.
<br />In business there is something commonly called a competitive advantage, which is how a company can compete in a competitive environment, if they have an edge. A G-tube is your nutritional advantage and you can really take advantage and maximize its use for optimum nutrition. It helps you compete in the drawn out battle against this damned disease and all we have to deal with it. You can try to eat your way to success but it is so hard to get enough calories to get over the hurdle of that 3000 calories a day. If you give your body the nutrients it needs, and it can utilize them, then it will know what to do with it. (Please look at gluten sensitivity for some real insights to better health).
<br />Do you know anyone that could eat an avocado, banana, walnut, sweet potato and tuna fish smoothie? Do you know how much nutrition you are getting? Lots balance and healthy.
<br />The ongoing challenge is we know what we need to do it just comes down to commitment. Well now possibly there is new drugs on the horizon it is important to keep up your hope and spirits. I know we run the risk of getting our hopes up again and again but what is the alternative.
<br />The key is doing a good thing many times not just one day you get 3000 calories you need to do it consistently and in a way that you will be compliant to yourself, regardless of how compliant you are with your other treatments. Well we have to be diligent with those too. It is all related. To run the risk of sounding trite, Nike said it best "Just Do It!"
<br />
<br />Also utilizing nightly tube feeds supplies your body with the needed nutrients during the night, a time that you usually are not eating. Again points for the G-tub e advantage.
<br />By making your own foods you get fresh and healthy foods, as good as you can get and you know exactly what is in there and what it is made of, conveniently made up in a blender and allowing you to bypass the arduous task of eating enough calories. This is critical if you have food allergies. And we do we just don't know it. I avoid soy, peanuts, dairy and gluten. The typical formula feeds enterral nutrition is basically dead nutrition and high glycemic. They formulate them for specific needs and they put the cheapest and nutritionally void foods in there. I know it is needed and I still use a formula but I am relying more on natural whole foods instead. I know this runs counter to the dieticians recommendations but they are just parroting what insurance and big pharmaceutical companies will support.
<br />
<br />Again the concept is high quality, real food, no gluten, dairy or high glycemic carbs, with good fats and protein in a balanced and consistent delivery method to get the nutrients you need. The concept is quality versus quantity. If you can bolus 3-4 times per day you will get the calories you need and make a better digestive load on your body and blood sugar, this helps you get nutrients and calories. Because you have digestive problems you need to be even more mindful of nutrition and how it is paramount to surviving this disease.
<br />The days of Pizza, Pepsis and cheese puffs are over, this is dead anti nutrition at its best. I know sounds like comfort food but this is sick food.
<br />Look at CF from a non CF point of view. Your body requires more nutrition the right kind more than someone else. Just you can eat more crap doesn't mean you should. So to compete with CF you have to outsmart it with good nutrition. Real , whole foods and supplements. No gluten, dairy or heavy sugar, soda etc. If it is processed food it is dead food.
<br />Food Allergies
<br /> Easiest way to tell if you are allergic to foods beyond the serious and obvious, is acne and congestion.
<br />If you are over 25 and have acne you have food allergies. IF you drink a milk shake and are junky then dairy is a problem. If you are suffering from inflammation, tiredness, stomach problems, arthritis etc you have to figure out what foods are your friends and what are your foes.
<br />If you bolus 3 cups of liquid you will get bloated. To start go slow it is best to successfully do 4 oz 4 times a day then all at once.
<br />If you do it and it works ok for you, you can add more based on your needs. It is a good idea to rotate foods so you are getting a balanced diet. I make up feed formulas every 3 days and just commit to cleaning up the kitchen, ok most times, except my wife might disagree and wonder what happened in here?
<br />Take it slow, start with a few ounces after you eat a snack or meal. Doing a G-tube bolus will make you feel full until you get use to the feeling. Remember the blending and mixing is like you super chewing the food. It is also best to bolus after you do eat some solids, you do not want to replace eating foods normally and doing the bolus after you eat ensures you do not fill up and avoid eating.
<br />Juicing - Green juice, fruits and vegetables is an excellent way to get the nutrients you need. You can juice and drink the juice or you can get creative and juice some heavy greens and bolus it. See what kind of advantage this is?
<br />You want the mixture smooth without any clumps, as even the smallest clump will clog the tube and make life messy. You want a pancake batter consistency, remember you don't have to drink it. Add more liquids or solids to your liking. Add all ingredients and blend well for 30 seconds or more. Adding more liquid speeds up the process. Remember you can drink water before or after if you feel full. Also take enzymes with antacids, helps the enzymes work more effectively.
<br />Pour out into shallow and steady bowl or wide mouth measuring cup container , this makes it easier to draw out liquid with syringe and to gauge how much you are using. I use a 60 cc syringe with a bolus attachment for G-tube it basically does not have the L shaped connector, this allows a faster and easier bolus. The L connector tends to clog with mixtures with a heavy consistency and when there are small clumps. I also use a 60cc and 30cc Luer Lock Tip type syringe, it fits into the hole in G-tube just evenly and use this when traveling or what not, here you do not need the bolus tube less parts to clean and carry around. It can be a little messier if you miss though.
<br />I do the bolus over the sink and rinse the syringe each time I draw out the liquid, this keeps things clean. I also have a paper towel to wipe up any spills. It takes a little finagling but you'll get the hang of it.
<br />Post back if you want to talk more.
<br />Rob
<br />
 

rmotion

New member
Tell me the last time you could eat this much high quality food?

RECIPE
Super Get Going breakfast
- High Protein, Low Glycemic Balanced and easily digested.
Over 700 calories of easy to digest and low glycemic foods.
Compatible foods less likely to rebound or feel full. Gluten Free and Dairy Free.
Food Calories Benefit
3 Eggs 108 High Protein, Perfect Amino Score, Easily Digested
1 Banana 90 Lower Glycemic Calories, Potassium
½ Cup Rice Flakes 50 Adds Calories, bulk and nutrition
1 TBL Olive Oil 135 Adds Calories and Omega 3's
2 TBL Honey 120 Good Carbs and many nutrients
1/8th tsp Sea Salt Essential Minerals and Sodium
4 OZ Sweet Potato 120 Good low glycemic calories and vitamins and fiber
I use baby food formula, already pureed and easy to use. I use the glass jar for later to store the formula for a day or so or for traveling. Just be careful with storage because of the eggs. I substitute frequently with rice protein.
½ Cup Rice or Coconut Milk 60 Provides calories and Liquid

Multivitamins and green food Taste free way to take vitamins
Probiotics Yogurt, kefir or good digestive health supplement
Coconut Oil 2TBL - 200+ Adds lots of calories and requires no enzymes to break down
Directions:
Cook eggs in microwave or stovetop, no need to taste good just cooked sufficiently.
Add Rice Milk to blender and all wet ingredients, mix well.
Add eggs and puree, making sure to make smooth.
Add banana and rice flakes, here you can adjust for thickness ,and consistency. If you add multivitamins and such make sure you add them to the liquid part because they can be chaulky or have the gel capsule needs to break down. You can open the capsule up too if it is not too hard.
Run mixture through a wire mesh colander to filter out the clumps( trust me a clogged tube is a mess ) if too clumpy blend and put through the colander again.
 

rmotion

New member
Tell me the last time you could eat this much high quality food?

RECIPE
Super Get Going breakfast
- High Protein, Low Glycemic Balanced and easily digested.
Over 700 calories of easy to digest and low glycemic foods.
Compatible foods less likely to rebound or feel full. Gluten Free and Dairy Free.
Food Calories Benefit
3 Eggs 108 High Protein, Perfect Amino Score, Easily Digested
1 Banana 90 Lower Glycemic Calories, Potassium
½ Cup Rice Flakes 50 Adds Calories, bulk and nutrition
1 TBL Olive Oil 135 Adds Calories and Omega 3's
2 TBL Honey 120 Good Carbs and many nutrients
1/8th tsp Sea Salt Essential Minerals and Sodium
4 OZ Sweet Potato 120 Good low glycemic calories and vitamins and fiber
I use baby food formula, already pureed and easy to use. I use the glass jar for later to store the formula for a day or so or for traveling. Just be careful with storage because of the eggs. I substitute frequently with rice protein.
½ Cup Rice or Coconut Milk 60 Provides calories and Liquid

Multivitamins and green food Taste free way to take vitamins
Probiotics Yogurt, kefir or good digestive health supplement
Coconut Oil 2TBL - 200+ Adds lots of calories and requires no enzymes to break down
Directions:
Cook eggs in microwave or stovetop, no need to taste good just cooked sufficiently.
Add Rice Milk to blender and all wet ingredients, mix well.
Add eggs and puree, making sure to make smooth.
Add banana and rice flakes, here you can adjust for thickness ,and consistency. If you add multivitamins and such make sure you add them to the liquid part because they can be chaulky or have the gel capsule needs to break down. You can open the capsule up too if it is not too hard.
Run mixture through a wire mesh colander to filter out the clumps( trust me a clogged tube is a mess ) if too clumpy blend and put through the colander again.
 

rmotion

New member
Tell me the last time you could eat this much high quality food?
<br />
<br />RECIPE
<br />Super Get Going breakfast
<br /> - High Protein, Low Glycemic Balanced and easily digested.
<br />Over 700 calories of easy to digest and low glycemic foods.
<br />Compatible foods less likely to rebound or feel full. Gluten Free and Dairy Free.
<br />Food Calories Benefit
<br />3 Eggs 108 High Protein, Perfect Amino Score, Easily Digested
<br />1 Banana 90 Lower Glycemic Calories, Potassium
<br />½ Cup Rice Flakes 50 Adds Calories, bulk and nutrition
<br />1 TBL Olive Oil 135 Adds Calories and Omega 3's
<br />2 TBL Honey 120 Good Carbs and many nutrients
<br />1/8th tsp Sea Salt Essential Minerals and Sodium
<br />4 OZ Sweet Potato 120 Good low glycemic calories and vitamins and fiber
<br /> I use baby food formula, already pureed and easy to use. I use the glass jar for later to store the formula for a day or so or for traveling. Just be careful with storage because of the eggs. I substitute frequently with rice protein.
<br />½ Cup Rice or Coconut Milk 60 Provides calories and Liquid
<br />
<br />Multivitamins and green food Taste free way to take vitamins
<br />Probiotics Yogurt, kefir or good digestive health supplement
<br />Coconut Oil 2TBL - 200+ Adds lots of calories and requires no enzymes to break down
<br />Directions:
<br />Cook eggs in microwave or stovetop, no need to taste good just cooked sufficiently.
<br />Add Rice Milk to blender and all wet ingredients, mix well.
<br />Add eggs and puree, making sure to make smooth.
<br />Add banana and rice flakes, here you can adjust for thickness ,and consistency. If you add multivitamins and such make sure you add them to the liquid part because they can be chaulky or have the gel capsule needs to break down. You can open the capsule up too if it is not too hard.
<br />Run mixture through a wire mesh colander to filter out the clumps( trust me a clogged tube is a mess ) if too clumpy blend and put through the colander again.
<br />
<br />
 

rmotion

New member
Night Feeds

Food Calories Benefit
1 Cup Rice Flakes 100 Adds Calories, bulk and nutrition
2 TBL Olive Oil 135 Adds Calories and Omega 3's or similar
2 TBL Sunflower seed Butter 200 Adds Calories and Omega 3's or similar
3 TBL Honey 180 Concentrated Good Carbs and many nutrients
8 OZ Sweet Potato 240 Good low glycemic calories and vitamins and fiber
3 TBL Rice Protein 180 Provides non dairy or soy protein
1 Cup Rice Milk 100 Provides calories and Liquid
1 Cup Coconut Milk Beverage 100 Provides calories and Liquid - You can use straight coconut milk and this will double the fats. Coconut milk fat is easily digested and contrary to popular belief is very good for you. Google "coconut milk benefit" for more info)
1 tsp Sea Salt Essential Minerals and Sodium ( May adjust based on needs)

Directions:
Add Rice Milk to blender and all wet ingredients, mix well. Add Olive oil and Sunflower seed Butter. Blend together.
Add dry ingredients in separate bowl and mix together. Slowly add to mixture to get a runny pancake batter consistency.
Night feedings are more problematic with ingredients settling and clogging. Better to err on the side of too runny than too thick. It is recommended to shake mix in feed bag during night to ensure continuous mixture.
 

rmotion

New member
Night Feeds

Food Calories Benefit
1 Cup Rice Flakes 100 Adds Calories, bulk and nutrition
2 TBL Olive Oil 135 Adds Calories and Omega 3's or similar
2 TBL Sunflower seed Butter 200 Adds Calories and Omega 3's or similar
3 TBL Honey 180 Concentrated Good Carbs and many nutrients
8 OZ Sweet Potato 240 Good low glycemic calories and vitamins and fiber
3 TBL Rice Protein 180 Provides non dairy or soy protein
1 Cup Rice Milk 100 Provides calories and Liquid
1 Cup Coconut Milk Beverage 100 Provides calories and Liquid - You can use straight coconut milk and this will double the fats. Coconut milk fat is easily digested and contrary to popular belief is very good for you. Google "coconut milk benefit" for more info)
1 tsp Sea Salt Essential Minerals and Sodium ( May adjust based on needs)

Directions:
Add Rice Milk to blender and all wet ingredients, mix well. Add Olive oil and Sunflower seed Butter. Blend together.
Add dry ingredients in separate bowl and mix together. Slowly add to mixture to get a runny pancake batter consistency.
Night feedings are more problematic with ingredients settling and clogging. Better to err on the side of too runny than too thick. It is recommended to shake mix in feed bag during night to ensure continuous mixture.
 

rmotion

New member
Night Feeds
<br />
<br />Food Calories Benefit
<br />1 Cup Rice Flakes 100 Adds Calories, bulk and nutrition
<br />2 TBL Olive Oil 135 Adds Calories and Omega 3's or similar
<br />2 TBL Sunflower seed Butter 200 Adds Calories and Omega 3's or similar
<br />3 TBL Honey 180 Concentrated Good Carbs and many nutrients
<br />8 OZ Sweet Potato 240 Good low glycemic calories and vitamins and fiber
<br />3 TBL Rice Protein 180 Provides non dairy or soy protein
<br />1 Cup Rice Milk 100 Provides calories and Liquid
<br />1 Cup Coconut Milk Beverage 100 Provides calories and Liquid - You can use straight coconut milk and this will double the fats. Coconut milk fat is easily digested and contrary to popular belief is very good for you. Google "coconut milk benefit" for more info)
<br />1 tsp Sea Salt Essential Minerals and Sodium ( May adjust based on needs)
<br />
<br />Directions:
<br />Add Rice Milk to blender and all wet ingredients, mix well. Add Olive oil and Sunflower seed Butter. Blend together.
<br />Add dry ingredients in separate bowl and mix together. Slowly add to mixture to get a runny pancake batter consistency.
<br />Night feedings are more problematic with ingredients settling and clogging. Better to err on the side of too runny than too thick. It is recommended to shake mix in feed bag during night to ensure continuous mixture.
<br />
 

rmotion

New member
Apple Cider Vinegar - Congestion Buster
Food Calories Benefit
1 oz Apple Cider Vinegar 10 Clears congestion, helps digestion
3 TBL Honey 180 Concentrated Good Carbs and many nutrients
1 oz Lemon Juice 10 Good for nutrients, congestion and PH
½ tsp Sea Salt Helps with congestion and such
1 oz Carrot Juice 15 Good Beta Carotene and Vitamin A
Mix in small cup, draw with syringe. Bolus through g-tube. Caution can be acidic and needs to go slow start with ¼ amount to start. Drink water or liquids after bolus. Best to do without foods especially dairy will tend to curdle in stomach. Do not put in feeds or other mixtures may tend to not mix well.
 

rmotion

New member
Apple Cider Vinegar - Congestion Buster
Food Calories Benefit
1 oz Apple Cider Vinegar 10 Clears congestion, helps digestion
3 TBL Honey 180 Concentrated Good Carbs and many nutrients
1 oz Lemon Juice 10 Good for nutrients, congestion and PH
½ tsp Sea Salt Helps with congestion and such
1 oz Carrot Juice 15 Good Beta Carotene and Vitamin A
Mix in small cup, draw with syringe. Bolus through g-tube. Caution can be acidic and needs to go slow start with ¼ amount to start. Drink water or liquids after bolus. Best to do without foods especially dairy will tend to curdle in stomach. Do not put in feeds or other mixtures may tend to not mix well.
 

rmotion

New member
<br />Apple Cider Vinegar - Congestion Buster
<br />Food Calories Benefit
<br />1 oz Apple Cider Vinegar 10 Clears congestion, helps digestion
<br />3 TBL Honey 180 Concentrated Good Carbs and many nutrients
<br />1 oz Lemon Juice 10 Good for nutrients, congestion and PH
<br /> ½ tsp Sea Salt Helps with congestion and such
<br />1 oz Carrot Juice 15 Good Beta Carotene and Vitamin A
<br />Mix in small cup, draw with syringe. Bolus through g-tube. Caution can be acidic and needs to go slow start with ¼ amount to start. Drink water or liquids after bolus. Best to do without foods especially dairy will tend to curdle in stomach. Do not put in feeds or other mixtures may tend to not mix well.
<br />
 

rmotion

New member
G-Tube Advantage II
We all are looking to a silver bullet for CF. We all agree we only need a slight improvement in CFTR or other channel to make a difference in our health. Well we will still need a good foundation for good health. Any new therapy will only be as effective as you are healthy. Will this therapy be a silver bullet who knows but guess what no matter what it does we will still need mega nutrition to help us out. So load that gun with tomatoes and carrots and take aim at this beast.
It seems that younger kids with CF are healthier these days and that is due to an increase in nutritional awareness over the last 15 years. Is it possible to be healthier traditionally of course you just have to decide that is what you are going to do. It is good but there is so much more out there. For instance CF's have a huge deficiency in anitoxidants. There is much research that Coenzyme Q-10 can be beneficial for those with CF but you don't hear about it because it is not a drug or even listed as an essential nutrient so it is brushed aside for the next 10 years. There are countless examples for all sorts of nutrients and diseases. Need glasses well there are some great nutrients that our eyes need and more than likely we are not getting them. Look up bilberry, luetin, astaxathin and more.
Often times with CF we just do not want to deal with everything, it is just human nature. Guilty. But looking back the more I dealt with stuff the better I could manage. I look at what is the worse case scenario and back up from there. If you can handle that then you can move forward past some of your challenges. Take blood sugar and CFRD. It is well known that most CF adults develop CFRD. Well lets ackwnoledge that is a challenge the sooner we can look at it objectively the better we can manage it.
CFRD is simply you are not making enough insulin due to long term chronic inflammation and damage to the pancreas from CF. Well instead of hemming and hawing take the fear out try to understand it and figure out how nutritionally you can deal with it. Way before there is a clinical diagnosis of CFRD your body is dealing with inflammation, oxidative damage and insulin problems. How can you be proactive? Test your blood sugar every six months, find out if a long acting insulin can help you even if there is no official diagnosis of CFRD. Doing this helps your body use glucose that you can use to be healthy. A high blood sugar effects the lungs and infection big time. Not getting enough glucose utilized affects your brain one of the largest consumer of glucose in your body. I wish I understood this long time ago. I was afraid of it and did not one more thing to deal with. Nobody ever told me not to drink Coke. Not realizing that soda could be such a huge problem for anyone not just with CF. There are 16 tea spoons of sugar in a 12 oz can of Coke. That is more than a teaspoon per ounce. Your body has to process this and it is too much not to mention that soda is so acidic that also causes your body to have to work overtime to neutralize the acid. Tired, want the caffeine in the soda that is because you are dehydrated and deficient and often times coming off a sugar spike prompting you to want another. And the cycle continues. This simple act of taking soda out of your diet is a huge step helping your body. So with regards to a g-tube and blood sugar, well usually formulas are very high glycemic(meaning it will spike your blood sugar) mainly due to the fact it is just process corn syrup as a source for calories. In the G-tube you can bolus sweet potato that is low glycemic, full of nutrients, fiber and good balanced calories.


Look up any health book or diet book that promotes alternative healing. Like "prescriptions for nutritional healing"


Google: glycemic index, long acting insulin(Levamir), CFRD, paleo diet, diabetes, aspartame
Recently I had a tune up at the hospital and I notice what is on the food trays of some of the other patients. Junk, Coke, jello, mac and cheese - this is a problem. There is no way to get healthy eating from a vending machine.
I have been using the G-Tube for over 20 years and only the last few recently and just real recently as the G-Tube advantage I am seeing great results. The key is consistency and manageable processes.
Better health is within your reach.
I know it is struggle to eat most the time we do not want to or feel like it. Most feeding formulas are just crap food not live and healthy. In the past where would I be able to consume an whole avocado, ½ cup of cottage cheese, six egg whites, table spoon of olive oil, 1 Cup of sweet potato all washed down with a cup of coconut milk. If I told you to eat that for lunch you'd be like ah no thanks. Not possible well that was lunch and some leftover for later. Plus I'll try to eat some leftovers or a sandwich. You have to take it up a notch and utilize the G-tube to really make an impact in your health.
Before I was a proponent of a G-tube for those who could not gain weight. Using it you will gain weight, but will you gain health? Hardly, no I am such a believer in the G-Tube that I recommend to someone with Cf that just wants to be healthier to get one. If you have one it is time to use it to your advantage.
4 years ago I was real sick and could not eat(I was in a coma for 2 weeks, my family had made funeral arrangements for me is how bad I was). I survived and slowly got back to health. Found out I had many food allergies and had to radically alter my diet. So going from a deathly 99 pounds to a healthy 150 is pretty life changing for me. I eat well and my stomach is in great shape. I marvel at how good some poops are and just wish I could show someone, I guess I keep it to myself and just chuckle they would have to take my word on it.
Give your body the nutrients it needs it will figure it out.
With CF we often focus on what is not working, well something is working somewhat or we would not be here. It is such a catch-22 situation. You are deficient in nutrients, your bowels and enzymes are poorly performing, you can not get enough nutrients to be at a healthy weight so you low energy, a higher calorie requirement due to lung problems and around and around it goes. Well lets say you do the bare minimum with regards to nutrition. You eat low quality foods and digest poorly you then are missing key nutrients that your body needs to build and repair and grow let alone gain weight. You can not to the bare minimum you have to do the maximum and a better and more complete job. Not fair I know it is just how it is.


Over supplementation is not the answer.
Years ago I read somewhere that Sylvester Stallone took up to 75 vitamins and supplements per day. Wow no wonder he is Rocky. I thought what does he know that others do not. Why doesn't my doctor tell me to take 75 vitamins a day. Who's right? Is Stallone healthier than my Pulmonologist, probably beat him up in the ring. Well both are wrong and both right. Stallone knows that he needs extra nutrients to train and be on top of his game, I suspect he works out and eats bananas and chicken breast and is generally healthy so he wins. The problem with over supplementation is that all those vitamins are synthetic and can actually tax and stress your body. So in that case the Doc is right. Most vitamins it is hard to overdose but best not to put that much strain on your liver and kidneys. So what is the right answer well simply balanced nutrients in the form of supplements and mega amounts of real whole food nutrients the way nature intended complete and intact with a digestive system that can break down the fats, carbs and proteins and extract the necessary nutrients it needs.
 

rmotion

New member
G-Tube Advantage II
We all are looking to a silver bullet for CF. We all agree we only need a slight improvement in CFTR or other channel to make a difference in our health. Well we will still need a good foundation for good health. Any new therapy will only be as effective as you are healthy. Will this therapy be a silver bullet who knows but guess what no matter what it does we will still need mega nutrition to help us out. So load that gun with tomatoes and carrots and take aim at this beast.
It seems that younger kids with CF are healthier these days and that is due to an increase in nutritional awareness over the last 15 years. Is it possible to be healthier traditionally of course you just have to decide that is what you are going to do. It is good but there is so much more out there. For instance CF's have a huge deficiency in anitoxidants. There is much research that Coenzyme Q-10 can be beneficial for those with CF but you don't hear about it because it is not a drug or even listed as an essential nutrient so it is brushed aside for the next 10 years. There are countless examples for all sorts of nutrients and diseases. Need glasses well there are some great nutrients that our eyes need and more than likely we are not getting them. Look up bilberry, luetin, astaxathin and more.
Often times with CF we just do not want to deal with everything, it is just human nature. Guilty. But looking back the more I dealt with stuff the better I could manage. I look at what is the worse case scenario and back up from there. If you can handle that then you can move forward past some of your challenges. Take blood sugar and CFRD. It is well known that most CF adults develop CFRD. Well lets ackwnoledge that is a challenge the sooner we can look at it objectively the better we can manage it.
CFRD is simply you are not making enough insulin due to long term chronic inflammation and damage to the pancreas from CF. Well instead of hemming and hawing take the fear out try to understand it and figure out how nutritionally you can deal with it. Way before there is a clinical diagnosis of CFRD your body is dealing with inflammation, oxidative damage and insulin problems. How can you be proactive? Test your blood sugar every six months, find out if a long acting insulin can help you even if there is no official diagnosis of CFRD. Doing this helps your body use glucose that you can use to be healthy. A high blood sugar effects the lungs and infection big time. Not getting enough glucose utilized affects your brain one of the largest consumer of glucose in your body. I wish I understood this long time ago. I was afraid of it and did not one more thing to deal with. Nobody ever told me not to drink Coke. Not realizing that soda could be such a huge problem for anyone not just with CF. There are 16 tea spoons of sugar in a 12 oz can of Coke. That is more than a teaspoon per ounce. Your body has to process this and it is too much not to mention that soda is so acidic that also causes your body to have to work overtime to neutralize the acid. Tired, want the caffeine in the soda that is because you are dehydrated and deficient and often times coming off a sugar spike prompting you to want another. And the cycle continues. This simple act of taking soda out of your diet is a huge step helping your body. So with regards to a g-tube and blood sugar, well usually formulas are very high glycemic(meaning it will spike your blood sugar) mainly due to the fact it is just process corn syrup as a source for calories. In the G-tube you can bolus sweet potato that is low glycemic, full of nutrients, fiber and good balanced calories.


Look up any health book or diet book that promotes alternative healing. Like "prescriptions for nutritional healing"


Google: glycemic index, long acting insulin(Levamir), CFRD, paleo diet, diabetes, aspartame
Recently I had a tune up at the hospital and I notice what is on the food trays of some of the other patients. Junk, Coke, jello, mac and cheese - this is a problem. There is no way to get healthy eating from a vending machine.
I have been using the G-Tube for over 20 years and only the last few recently and just real recently as the G-Tube advantage I am seeing great results. The key is consistency and manageable processes.
Better health is within your reach.
I know it is struggle to eat most the time we do not want to or feel like it. Most feeding formulas are just crap food not live and healthy. In the past where would I be able to consume an whole avocado, ½ cup of cottage cheese, six egg whites, table spoon of olive oil, 1 Cup of sweet potato all washed down with a cup of coconut milk. If I told you to eat that for lunch you'd be like ah no thanks. Not possible well that was lunch and some leftover for later. Plus I'll try to eat some leftovers or a sandwich. You have to take it up a notch and utilize the G-tube to really make an impact in your health.
Before I was a proponent of a G-tube for those who could not gain weight. Using it you will gain weight, but will you gain health? Hardly, no I am such a believer in the G-Tube that I recommend to someone with Cf that just wants to be healthier to get one. If you have one it is time to use it to your advantage.
4 years ago I was real sick and could not eat(I was in a coma for 2 weeks, my family had made funeral arrangements for me is how bad I was). I survived and slowly got back to health. Found out I had many food allergies and had to radically alter my diet. So going from a deathly 99 pounds to a healthy 150 is pretty life changing for me. I eat well and my stomach is in great shape. I marvel at how good some poops are and just wish I could show someone, I guess I keep it to myself and just chuckle they would have to take my word on it.
Give your body the nutrients it needs it will figure it out.
With CF we often focus on what is not working, well something is working somewhat or we would not be here. It is such a catch-22 situation. You are deficient in nutrients, your bowels and enzymes are poorly performing, you can not get enough nutrients to be at a healthy weight so you low energy, a higher calorie requirement due to lung problems and around and around it goes. Well lets say you do the bare minimum with regards to nutrition. You eat low quality foods and digest poorly you then are missing key nutrients that your body needs to build and repair and grow let alone gain weight. You can not to the bare minimum you have to do the maximum and a better and more complete job. Not fair I know it is just how it is.


Over supplementation is not the answer.
Years ago I read somewhere that Sylvester Stallone took up to 75 vitamins and supplements per day. Wow no wonder he is Rocky. I thought what does he know that others do not. Why doesn't my doctor tell me to take 75 vitamins a day. Who's right? Is Stallone healthier than my Pulmonologist, probably beat him up in the ring. Well both are wrong and both right. Stallone knows that he needs extra nutrients to train and be on top of his game, I suspect he works out and eats bananas and chicken breast and is generally healthy so he wins. The problem with over supplementation is that all those vitamins are synthetic and can actually tax and stress your body. So in that case the Doc is right. Most vitamins it is hard to overdose but best not to put that much strain on your liver and kidneys. So what is the right answer well simply balanced nutrients in the form of supplements and mega amounts of real whole food nutrients the way nature intended complete and intact with a digestive system that can break down the fats, carbs and proteins and extract the necessary nutrients it needs.
 

rmotion

New member
G-Tube Advantage II
<br />We all are looking to a silver bullet for CF. We all agree we only need a slight improvement in CFTR or other channel to make a difference in our health. Well we will still need a good foundation for good health. Any new therapy will only be as effective as you are healthy. Will this therapy be a silver bullet who knows but guess what no matter what it does we will still need mega nutrition to help us out. So load that gun with tomatoes and carrots and take aim at this beast.
<br />It seems that younger kids with CF are healthier these days and that is due to an increase in nutritional awareness over the last 15 years. Is it possible to be healthier traditionally of course you just have to decide that is what you are going to do. It is good but there is so much more out there. For instance CF's have a huge deficiency in anitoxidants. There is much research that Coenzyme Q-10 can be beneficial for those with CF but you don't hear about it because it is not a drug or even listed as an essential nutrient so it is brushed aside for the next 10 years. There are countless examples for all sorts of nutrients and diseases. Need glasses well there are some great nutrients that our eyes need and more than likely we are not getting them. Look up bilberry, luetin, astaxathin and more.
<br />Often times with CF we just do not want to deal with everything, it is just human nature. Guilty. But looking back the more I dealt with stuff the better I could manage. I look at what is the worse case scenario and back up from there. If you can handle that then you can move forward past some of your challenges. Take blood sugar and CFRD. It is well known that most CF adults develop CFRD. Well lets ackwnoledge that is a challenge the sooner we can look at it objectively the better we can manage it.
<br />CFRD is simply you are not making enough insulin due to long term chronic inflammation and damage to the pancreas from CF. Well instead of hemming and hawing take the fear out try to understand it and figure out how nutritionally you can deal with it. Way before there is a clinical diagnosis of CFRD your body is dealing with inflammation, oxidative damage and insulin problems. How can you be proactive? Test your blood sugar every six months, find out if a long acting insulin can help you even if there is no official diagnosis of CFRD. Doing this helps your body use glucose that you can use to be healthy. A high blood sugar effects the lungs and infection big time. Not getting enough glucose utilized affects your brain one of the largest consumer of glucose in your body. I wish I understood this long time ago. I was afraid of it and did not one more thing to deal with. Nobody ever told me not to drink Coke. Not realizing that soda could be such a huge problem for anyone not just with CF. There are 16 tea spoons of sugar in a 12 oz can of Coke. That is more than a teaspoon per ounce. Your body has to process this and it is too much not to mention that soda is so acidic that also causes your body to have to work overtime to neutralize the acid. Tired, want the caffeine in the soda that is because you are dehydrated and deficient and often times coming off a sugar spike prompting you to want another. And the cycle continues. This simple act of taking soda out of your diet is a huge step helping your body. So with regards to a g-tube and blood sugar, well usually formulas are very high glycemic(meaning it will spike your blood sugar) mainly due to the fact it is just process corn syrup as a source for calories. In the G-tube you can bolus sweet potato that is low glycemic, full of nutrients, fiber and good balanced calories.
<br />
<br />
<br />Look up any health book or diet book that promotes alternative healing. Like "prescriptions for nutritional healing"
<br />
<br />
<br />Google: glycemic index, long acting insulin(Levamir), CFRD, paleo diet, diabetes, aspartame
<br />Recently I had a tune up at the hospital and I notice what is on the food trays of some of the other patients. Junk, Coke, jello, mac and cheese - this is a problem. There is no way to get healthy eating from a vending machine.
<br />I have been using the G-Tube for over 20 years and only the last few recently and just real recently as the G-Tube advantage I am seeing great results. The key is consistency and manageable processes.
<br />Better health is within your reach.
<br /> I know it is struggle to eat most the time we do not want to or feel like it. Most feeding formulas are just crap food not live and healthy. In the past where would I be able to consume an whole avocado, ½ cup of cottage cheese, six egg whites, table spoon of olive oil, 1 Cup of sweet potato all washed down with a cup of coconut milk. If I told you to eat that for lunch you'd be like ah no thanks. Not possible well that was lunch and some leftover for later. Plus I'll try to eat some leftovers or a sandwich. You have to take it up a notch and utilize the G-tube to really make an impact in your health.
<br />Before I was a proponent of a G-tube for those who could not gain weight. Using it you will gain weight, but will you gain health? Hardly, no I am such a believer in the G-Tube that I recommend to someone with Cf that just wants to be healthier to get one. If you have one it is time to use it to your advantage.
<br />4 years ago I was real sick and could not eat(I was in a coma for 2 weeks, my family had made funeral arrangements for me is how bad I was). I survived and slowly got back to health. Found out I had many food allergies and had to radically alter my diet. So going from a deathly 99 pounds to a healthy 150 is pretty life changing for me. I eat well and my stomach is in great shape. I marvel at how good some poops are and just wish I could show someone, I guess I keep it to myself and just chuckle they would have to take my word on it.
<br />Give your body the nutrients it needs it will figure it out.
<br />With CF we often focus on what is not working, well something is working somewhat or we would not be here. It is such a catch-22 situation. You are deficient in nutrients, your bowels and enzymes are poorly performing, you can not get enough nutrients to be at a healthy weight so you low energy, a higher calorie requirement due to lung problems and around and around it goes. Well lets say you do the bare minimum with regards to nutrition. You eat low quality foods and digest poorly you then are missing key nutrients that your body needs to build and repair and grow let alone gain weight. You can not to the bare minimum you have to do the maximum and a better and more complete job. Not fair I know it is just how it is.
<br />
<br />
<br />Over supplementation is not the answer.
<br /> Years ago I read somewhere that Sylvester Stallone took up to 75 vitamins and supplements per day. Wow no wonder he is Rocky. I thought what does he know that others do not. Why doesn't my doctor tell me to take 75 vitamins a day. Who's right? Is Stallone healthier than my Pulmonologist, probably beat him up in the ring. Well both are wrong and both right. Stallone knows that he needs extra nutrients to train and be on top of his game, I suspect he works out and eats bananas and chicken breast and is generally healthy so he wins. The problem with over supplementation is that all those vitamins are synthetic and can actually tax and stress your body. So in that case the Doc is right. Most vitamins it is hard to overdose but best not to put that much strain on your liver and kidneys. So what is the right answer well simply balanced nutrients in the form of supplements and mega amounts of real whole food nutrients the way nature intended complete and intact with a digestive system that can break down the fats, carbs and proteins and extract the necessary nutrients it needs.
<br />
 

Ldude916

New member
Oh I should add...I have an insulin pump, so I don't have to worry about manually bolusing myself overnight for my CFRD =) I was able to order the sensors, which talk to the pump and take glucose readings every 5 minutes, so my Endo was able to get a bolusing plan for overnight programmed into my pump.

Ok, so being tied to a pole sucks, but so what, you gotta drag it into the bathroom to pee. I'd rather be 20 lbs heavier and stronger! I usually do wake up to pee 1 time a night. I remember the first 2 weeks of doing the feedings was hard b/c my body was getting used to 'eating while sleeping'....so it was hard to sleep and I had to pee more the first 2 weeks during the night....eventually your body adjusts!

I can sleep on my sides and back. I don't sleep on my tummy when hooked up b/c there is a little leakage, but when I am not hooked up, I do lie on my stomach no problem (and hug people no problem). My tube never hurts. I think theLostMiller has an unfortuante case and definitely you should ask your doctor how many procedures he has done and how he does it.

My doctor's procedure went like this: stitched my stomach to my abdomen wall with 3 small sutures before feeding an instrument down my throat, into my stomach and up through my abdomen. It was sensitive and hurt for a few days....definitely hard to cough!! But, CFers are strong and we can get thru it =) After about 2 weeks I was fine. The 3 stitches he made eventually fell off themselves. Whenever I get my tube changed, the nurse has an instrument to measure the depth of tube I need (I think I have 2.7cm) and the French size is 20.

I seriously never know it's there. I am so sorry theLostMiller has had so much trouble =( Oh. the other thing, make sure when you get it, you tape the extension set to the button when you feed. I've had them come apart at night and soaked my mattress with formula. SUCKS!
 

Ldude916

New member
Oh I should add...I have an insulin pump, so I don't have to worry about manually bolusing myself overnight for my CFRD =) I was able to order the sensors, which talk to the pump and take glucose readings every 5 minutes, so my Endo was able to get a bolusing plan for overnight programmed into my pump.

Ok, so being tied to a pole sucks, but so what, you gotta drag it into the bathroom to pee. I'd rather be 20 lbs heavier and stronger! I usually do wake up to pee 1 time a night. I remember the first 2 weeks of doing the feedings was hard b/c my body was getting used to 'eating while sleeping'....so it was hard to sleep and I had to pee more the first 2 weeks during the night....eventually your body adjusts!

I can sleep on my sides and back. I don't sleep on my tummy when hooked up b/c there is a little leakage, but when I am not hooked up, I do lie on my stomach no problem (and hug people no problem). My tube never hurts. I think theLostMiller has an unfortuante case and definitely you should ask your doctor how many procedures he has done and how he does it.

My doctor's procedure went like this: stitched my stomach to my abdomen wall with 3 small sutures before feeding an instrument down my throat, into my stomach and up through my abdomen. It was sensitive and hurt for a few days....definitely hard to cough!! But, CFers are strong and we can get thru it =) After about 2 weeks I was fine. The 3 stitches he made eventually fell off themselves. Whenever I get my tube changed, the nurse has an instrument to measure the depth of tube I need (I think I have 2.7cm) and the French size is 20.

I seriously never know it's there. I am so sorry theLostMiller has had so much trouble =( Oh. the other thing, make sure when you get it, you tape the extension set to the button when you feed. I've had them come apart at night and soaked my mattress with formula. SUCKS!
 

Ldude916

New member
Oh I should add...I have an insulin pump, so I don't have to worry about manually bolusing myself overnight for my CFRD =) I was able to order the sensors, which talk to the pump and take glucose readings every 5 minutes, so my Endo was able to get a bolusing plan for overnight programmed into my pump.
<br />
<br />Ok, so being tied to a pole sucks, but so what, you gotta drag it into the bathroom to pee. I'd rather be 20 lbs heavier and stronger! I usually do wake up to pee 1 time a night. I remember the first 2 weeks of doing the feedings was hard b/c my body was getting used to 'eating while sleeping'....so it was hard to sleep and I had to pee more the first 2 weeks during the night....eventually your body adjusts!
<br />
<br />I can sleep on my sides and back. I don't sleep on my tummy when hooked up b/c there is a little leakage, but when I am not hooked up, I do lie on my stomach no problem (and hug people no problem). My tube never hurts. I think theLostMiller has an unfortuante case and definitely you should ask your doctor how many procedures he has done and how he does it.
<br />
<br />My doctor's procedure went like this: stitched my stomach to my abdomen wall with 3 small sutures before feeding an instrument down my throat, into my stomach and up through my abdomen. It was sensitive and hurt for a few days....definitely hard to cough!! But, CFers are strong and we can get thru it =) After about 2 weeks I was fine. The 3 stitches he made eventually fell off themselves. Whenever I get my tube changed, the nurse has an instrument to measure the depth of tube I need (I think I have 2.7cm) and the French size is 20.
<br />
<br />I seriously never know it's there. I am so sorry theLostMiller has had so much trouble =( Oh. the other thing, make sure when you get it, you tape the extension set to the button when you feed. I've had them come apart at night and soaked my mattress with formula. SUCKS!
 
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