Hi guys, I 've been posting on the recurrence section since this came back twice.
My feeding tube through my nose into my stomach was working but the tape came off my nose and out came the tube. I have a temporary trach but can't swallow enough to eat. Thew nose tube was a pain always in the way. Should I ask them to do the stomach PEG. I will have to get something today if only for a short period of time. I hate to go through another surgical process. Thanks Steve Hurlock

Steve

Long time OCF readers may be surprised at my answer here, but yes,if you are going to need a feeding tube and cannot swallow enough for nutrition, I found the PEG to be easier to deal with than the nasal tube. BTW, I have had a nasal tube, a PEG, and now a button so as far as G tubes go, I've had them all. When I had my temporary trach, the nasal tube interfered with my spitting up the mucous or more accurately coughing/blowing it out the trach hole/stoma.
But if you end up with the tube longer than 6 months, switch to a button. It's not really "surgery" to put in a PEG although the hospitals and doctors bill the insurance company that way. Think of it more like a stomach piercing.
Hope you ditch all tubes soon
Charm

Charm exactly...I found myself spitting more on the tube then container Thanks for quick reply Steve Hurlock

I found the nasal tube to work for me BUT I only needed it for 2 weeks and I didn't have a trach. Funny I rolled over on my tube my first night with it in and it got caught and pulled out and I awoke to a wet bed.

Hi Steve, I would also advise you to get the PEG. It is important that you keep your nutrition going and realistically , you are not yet ready to eat the normal way. A PEG will do the job easily. And without fuss.
What do your docs advise?
Hope things are improving for you,
Tammy

I think you would be much happier with the PEG. Go for it!!

Go for the tube. You get used to it in no time.

Charm... what is a Button??

EZJim

We "tubies" have our own specialized vocabulary just like OCF's members. The PEG most OCF members get is simply a long tube that goes into the stomach with about six to nine inches hanging outside like a swinging cat's tail. The medical name for the long tube is a gastronomy tube. The "button" is a nickname for a low profile gastronomy tube.
However you usually need to first get the long tube so the stoma (the hole in your stomach that the tube goes through)stablizes and then get its exact measurement. For example, my button is 3.5 cm long.
As far as inserting the button, it is even easier than the long tube since the button can only fit in one way: the correct way. Unlike the long tube, the button cannot be pushed into the stomach too far or too short. In fact, the button is so easy to change, that now my wife can do it. The button does have a special valve in it that the tube does not, an anti reflux valve that you need to hook up an extension to that lets you pour your feeds into it since the button lies right next to your skin. But with the valve, the button can never accidentally leak like the long tube does if the clamp comes open.
Here is a link to a picture of my AMT mini one button
AMT button
It gets more complicated if you need a J tube (goes to the jejunum - the section of the small intestine between the duodenum and the ileum) in addition to a G tube like Christine does, although AMT makes J/G buttons also.
Thanks for bringing this up. In the future I will use button (low profile gastronomy tube).
Charm

Thanks for the info, Charm! I just had my J/G tube replaced again today. How I hate having that done!!! Anyway, I specifically asked about if there was such a thing as a J/G button and was told no. The nurses said they usually only see the button used with children and they parents usually bring the button in to have it replaced. I referenced you and said that your wife changes your after the doc taught her how and they said yes that can be done. Of course we already knew that! Wonder why they told me there was no such thing as a J/G button. Guess it wouldnt be able to be changed at home since the 2 tubes go to different places.

PS...Didnt mean to hijack the thread. Im discussing alternate feedings tubes and the differences between them.

Christine

In this instance, "hijacking" is too harsh a term. I am shocked and disappointed over how your doctors used a technicality to not fully inform you. Of course there is no G/J "button" technically since the jejunum requires a tube instead of the button for additional displacement of the formula compared to dumping it right into the stomach. However there is a low profile G button with a J tube that is completely hidden and for all intents and purposes is a "button".
Please email them this link to a commercially available, highly rated combination Gastronomy /Jejunum low profile feeding tube.
G/J low profile feeding tube
While you would still want your doctors to do the installation, you would be free of that damn swinging cat's tail that we have both suffered through plus never have to worry about accidental leakage again.
A recent Tubie expert from Australia who just died (he was a tubie forum superstar and very nice to me) described it this way in his e-book.
[quote]Just a minor surgical procedure, one of a dozen or more a busy surgeon might do in a day. All too often, after-care is treated the same way; just a routine medicalized matter. Here�s the tube, take it home and live with it. The doctor or a dietitian will prescribe you a set amount of feed, most likely a commercial preparation commonly called simply �formula� and that�s it.

Having a new permanent tube in the family is more life-changing than that, and it deserves a bit more support and understanding. In an increasingly specialized world of medicine what so often seems to happen is that no one person, be it a doctor, nurse, dietitian or whoever, ends up taking responsibility for all the care and follow-up that�s needed for every patient and caregiver, so it just sort of slips through the cracks. Also, what little information the medical community does provide can vary from place to place, is usually a one-size-fits-all approach rather than a tailored set of guidelines for your unique situation, and in far too many cases can be frankly dispiriting, overly limiting, and disempowering..[/quote]
It's bad enough that we still bear all the aftereffects of radiation and chemotherapy but to easily know more than our own doctors about feeding tubes is quite sad.
Charm

I had not asked the doctor today, I only spoke with the nurses who assist with the surgery. I would think they should have known about the J/G button. When I go back for my yearly visit with the gastro doc I will ask him if I can change to the button. It looks alot more comfortable and much easier.

Thanks Charm!!!

Christine

No disrespect meant to your doctors. Mine are at a CCC and very good yet they did not know about the new improved AMT mini one or even the combo G/Jet until I told them about it. It turns out that they had relied upon the major tube manufacturer (Kimberly Clark: MicKey) representative for information so they were not familiar with AMT's innovations. One heads up: I would not wait until next year to ask them to check it out. My doctors had a very difficult time getting the AMT button for me, they had to call 5 different suppliers instead of their usual one. Likewise, I had to switch my medical delivery company to get the AMT. But while the brand of the standard PEG long tube doesn't matter (they are all just a silicon tube with a balloon), most tubies on the forums prefer AMT buttons over MicKey for comfort, less granulation, and longevity.
Charm

They put the PEG back in. Thought it could be out in a week or two. I did my swallow test today.Did pretty well with thicker food. Because of 17 surgeries my vocal area was already a mess. The scope showed I can get most stuff out of my wind pipe with work...coughing forcing air out. I think I'm off the fast food circuit for good. Need to check out more what foods work and what won't. Dr said no rice for sure or peas. Thanks For all the input. It has been 2 weeks since surgery and I feel like I'm only 10% of my normal self energy wise. Thanks Steve Hurlock

You might be ok to eat peas, I am able to. I have to mash them up real good but at least I can still get them down like that. Give them a try but mash them. Canned veggies are easier to eat than fresh or frozen. Beware of rice! Its sticky and can very easily make you choke. Here is a list of easy to eat foods, maybe some of these items will work for you.

Easy to Eat Food List

Tube came out the second time last night. I emailed the hospital and I see them tomorrow. Im trying the thicket in Ensure/water. I can do pudding if I eat real slow. Some light foods vey slow. Since my surgery the 27th of June I've lost 35 pounds. I had some to loose anyway Probably why I have NO energy.
No one seems too concerned for the rapid weight loss (except me). I've been trying to maintain 1400-1500 Calories a day. I know 2,000 is the magic number but I was O.K. with the weight loss. Now since I've lost the tube the second time I feel Like I've lost my security blanket. The Speech therapist said they were probably going to remove the tube tomorrow anyway. AM I READY...I want it gone but I can't imagine maintaining 2000 Ca with out the tube.Should I suggest a stomach feeding tube as a back-up plan, I crave water all the time and its taken me a better part of an hour to have 4 oz with Thicket by mouth.. Just needing a little advice...followed the weight lost part of the this forum and don't want to get out of control. Thanks Steve Hurlock

The magic number for calories when battling or recovering from oral cancer is really 2500 - 3000 per day. Even if you have weight to lose this is not a good way to lose it as you are losing muscle too.

I drink chocolate peanut butter milkshakes which are very high in calories. I also eat cream of wheat and strawberry cheesecake. Im very particular about my foods now. I can only eat the cheesecake a diner near me makes cuz its extra creamy and not dry at all. I also must have alot of whipped cream with it or I struggle with eating it.

Your doctors should be concerned about your weight loss. Im surprised they havent noticed it and set you up with a nutritionist. Do yourself a favor and ask for one. They really can help you alot and make sure you are doing ok by conducting a swallow test. When I went thru my treatment my doc told me flat out, "you may have some weight to lose but this is not the way to do it. Our goal here is to have zero weight loss." I still lost 65 pounds but they were all over me every single day. The nurses would make me sit down with them and do a feeding right there when I went to rads. The visiting nurse would make me do a feeding in front of them too. Your body wont be able to recover easily from what you have gone thru if you dont get proper nutrition and calories. You need high protein to help your body to rebuild itself. Every drug store sells the whey protein powder that you can easily mix into any drink or even into the tube feeding bags. You do not want to be hospitalized for malnutrition! I spent way too much time in the hospital for that and also being dehydrated. I know you havent had radiation but you did have a very invasive surgery that isnt easy to bounce back from. In the blink of an eye you can go from doing so-so to being hospitalized. Up your intake today!

nutrition, one of my favorite subjects. I wrote the following on another thread a few days ago, my thoughts for what they are worth.




...What we've noticed on the boards is that those patients who've focused on hydration and nutrition have an easier (relatively speaking) time through treatment and seem to "hold up" better. Hydrating is going to ease the nausea and help reduce the strain to your kidneys that all of these drugs are causing.

To emphasize the importance of nutrition, over 20% o all cancer patients die of malnutrition, not the cancer or treatment of. My guess is that that figure is most certainly higher in Oral Cancer patients due to the nature of our disease and the difficulty of delivering said nutrition. Due to the bodies natural response to both the cancer and the stress associated with the cancer experience your body is already not absorbing nutrients the way it should and is being put into a hyper metabolic state trying to heal itself from the effects of treatment. This creates a dangerous situation and usually leads to cachexia, or cancer related wasting syndrome where the body begins to catabolize it's lean muscle mass into energy and amino acids to throw at the immune response.

The hormones that trigger the immune response in the body also have the unfortunate side effect of reducing digestion and absorption, in addition the bodies cortisol levels become elevated (the hormone the body produces as a reaction to stress) furthering digestion/absorption issues as it counteracts insulin which is important in the metabolism of carbohydrates and fats for energy. To add to the problem, most of the medications that are prescribed to the cancer patient also constrain testosterone levels (opiates, anti-depressants etc) which is important in maintaining lean muscle mass and protein synthesis in the body.

So, the question is what steps can we take to give ourselves the best chance at surviving treatment and the effects of cancer? The few things we can control and the most important really after choosing our medical professionals is our attitude and our nutrition.

There are few ways outside of the harsh drugs used to treat Cushings Syndrome to control Cortisol in the body, however the ways to do it are easy stress management techniques. Stretching (I love Yoga or Tai Chi), walks, music, deep breathing, prayer, meditation, reading, movies etc. Your bodies cortisol is highest in the morning, lowering it then helps control it throughout the day so do something before you start the day to relax and lower your cortisol.

Limit your caffeine intake as well as it boosts cortisol, and can hinder sleep patterns, an issue you'll have also due to opiates (insomnia is a common side effect of opiate pain meds)...getting around 9hours of solid sleep reduces cortisol. Nutritionally Omega 3 fatty acids have been shown to reduce cortisol, which leads me to nutrition...a favorite subject of mine.

Now most of the Dr's and people on these forums will recommend liquid meal replacements like Ensure Plus or Boost (Carnation VHC is now Boost VHC) and they'll recommend 2500-5000 calories of whatever you can get down to help maintain weight, and in many cases this is actually part of the problem due to what these meal replacements are made of.

All of these meal replacements use corn syrup, and oil (canola, corn & soy) to deliver their calories, soy protein for protein, and then chalk them full of isolate vitamins and minerals, which are more difficult for the body to absorb. The issues with this are many so I'll explain in detail with the hopes of it making sense. Due to elevated cortisol levels and their effect on insulin, it's important to control blood sugar levels, which means limiting simple sugars and starches. Soy protein is one of the slowest proteins for uptake making it a poor choice for top level athletes and cancer patients alike due to their systems need for quick absorbing proteins. Lastly the oils used to increase calories in a mixture of Canola, Corn and Soy.

Now I'm a fan of getting your calories from fat (higher percentage of fat in the diet ups testosterone in the body that helps maintain and build muscle) but understand this is also a contributing factor for nausea as high fat diets actually cause nausea. Oils are a great way to add calories too and Canola is considered the healthiest due to it's the highest in unsaturated fat, however it's lower in monounsaturated fat then Olive Oil. My big issue here is that these are all Omega 6 fatty acids without the balance of Omega 3's which still leads to insulin resistance and metabolic syndrome, which your body is already experiencing due to the cancer experience as described above. It's estimated that western culture's diet now has a disproportionate ratio of Omega6/Omega3 by 20-30/1 where our ancestors were about 1/1, to 2/1.

Ketogenic Diets, or high protein diets have had success treating insulin resistance and "trick" the body into using fat as energy (both stored fat and fatty acids) by breaking them down to keytones. High protein diets though are usually are very high in saturated fats (bad) and puts an added strain on the kidneys, which when going through cancer treatments are already strained due to chemo, opiates and other drugs.

Where I haven't seen a study on this, I believe from my research that using a Ketogenic Diet focusing on high fat (poly and mono unsaturated fats with a balance of Omega6/Omega3 fatty acids of no more then 6/1, preferably lower), fast uptake protein (whey is the fastest) ,plenty of fresh fruits and vegetables(studies show organic fruits and veggies contain higher concentrations of vitamins and minerals, unlike isolates these are easily absorbed by the body), and coupled with relaxation techniques that help lower cortisol would significantly improve survival rates and how patients stand up to the brutal treatments we have to endure.

My thoughts are to use a liquid/blenderized diet high in good fats as described above, fast uptake whey protein and juiced/blended fruits and vegetables divided into 6 "meals" per day to stabilize blood sugars and counteract the metabolic syndrome patients experience to increase survival rates simply by making sure they have the proper nutrients their body needs to maintain lean muscle mass.

Wow that's almost a book...I told you nutrition was my favorite subject. Anyway if you need thoughts, recipe ideas etc I'd be glad to share. Keep hitting the anti nausea meds and keep the nutrition rolling, in whatever form you can keep down.

Eric

Thanks Christine/Eric....I had 32 rad treatment the first time before the tumor came back. I have about 2 hour energy in the morning and then I fade fast. I did the swallow test ... pretty much O.K. but very slow. I need to be honest with myself and as much as I feel the tube is a set back I can't sustain anywhere near 2500 ca with out it. I'm going to ask them for a stomach tube in lieu of nose peg. It has come out twice in 2 weeks. Plus this severe lack of energy fuels my already depressed state.
Thanks Steve Hurlock

Steve, I understand where you are coming from. In my opinion if you cant take in 2500 calories every single day for at least 2 months without using the tube then you are not ready to be without it. This is what my doc explained to me, that if I can do it for 2 months then I dont need it. I maintain a feeding tube for exactly what you just explained. Even with the tube I struggle to take in enough. Ive had issues with dehydration and malnutrition off and on for the past 5 years and that was with having a feeding tube. I dont know where I would be without one. Every single day even with the tube I must pay close attention to what I take in. You are smart to realize your limitations and opt to go with the tube until you can better manage your intake. Sorry, with so many members unless its in your signature I can sometimes forget peoples histories.

I drank Carnation Instant Breakfast VHC which has now been replaced with Boost VHC (very high calories) which has over 500 calories in each 8 ozs with every meal. I mixed mine half n half with whole milk.

I would ask for a peg... And maybe try making your own formulas - much as Eric does - with fresh natural foods and a protein supplement - I have a power shake every morning - though I don't use whey - I use a combination of non whey- non soy - vegan protein powders with fresh fruits organic cottage cheese, unsweetened almond milk and flax. It gives me a boost for the day and energy to boot. I was in Italy for two weeks and bought a blender there and brought my own powders, and started most days off with a toned down version of my usual shake. I have to say I missed my usual stuff - Italy has no unsweetened almond milk - though I did find a place in Florence at made their own - fruits - like bananas and berries were somewhat hard to come by and flax and cottage cheese? Not so much. I did find bananas in two cities, so I would use a bit of soy or almond milk - a banana and the protein. NOTthe same - it was like a power trek all over Italy and my energy was good, but not near what I have at home since the diet there is limited to pasta - pizza, grilled veggies (the same damn ones) rice balls, potatoes, and tomatoes and bocconcini. At one point I told my husband I would kill for some corn, beats and any veggie other than eggplant and zucchini. My point is this diet is very important.... Even if you can't get the full amount of calories, the quality of the calories is important. Junk will not feed your body. Maybe if you have to do a combination of formula and your own blended stuff. Put the formula down your tube and then make a couple of shakes for yourself and take your time drinking them throughout the day. Hugs and good luck,