Feeding Tube - Oral Cancer Support - Survivor / Patient Forum

Feeding tube procedure is scheduled, what is it like following the procedure. Pain? Leakage? What about eating, do we need to modify the diet until his body acclimates? This is a first step to prepare for therapy next week.

When the patient first gets the feeding tube they are usually in some pain. Most patients will stay over night in the hospital. After a couple days they will feel better. Often the plunger is too tight so if your husband is in alot of pain, check to see if the plastic disc is right next to his skin or if there is about 1/4-1/2 inch space. The doc or nurse can easily loosen it if its too tight.

As far as diet goes, the patient is able to continue to eat normally for as long as possible. Think of the tube as a back up plan. For supplementing the diet. Prescription formula will be given.

Follow up care is usually not the best with the feeding tube. If it isnt offered, ask for a visiting nurse to come help get your husband settled when he first goes home with his new tube. Most places will have visiting nurses who work late to accommodate those who work long hours. As the caregiver, you should be there for any demonstrations. Ask for a feeding pump as well. The pump, along with the supplies will come thru a medical supply company. The doc must prescribe a pump or you wont get one so make sure you ask for it.

Leakage can be controlled by applying whats called a drain sponge (piece of gauze with a slit)to the site. Its a good idea to get some antibiotic cream and apply a dab to the site daily after showers and cover it with a drain sponge.

Best wishes!!!

These procedures are being done by interventional radiology, an in and out procedure. When we first discussed it in the office the PA suggested he would be able to go to work the following day. This seemed extremely optimistic to me. Nursing is coming to the house the next day, he figures we will schedule that visit for the evening hours, after work. I have no idea if a pump has been ordered but, I doubt it. It had not even occurred to me to ask for one, figured we would not get one unless we needed it later. I know very little about feeding tubes outside of what I have read on the internet.
I keep wondering about making him feeds using a very high powered blender. I read the ingredients of the formulas and I am dismayed at the contents. It seems like if a person is highly motivated that formula could be homemade but, I have never even seen a food tube so I feel great hesitation. I also have concerns about his stomach being upset by the formulas when it is already upset by the therapy. My basic instinct is to feed him nourishing foods, not formula that seems to be made with corn syrup, starch and synthetic vitamins (based on the few ingredient listings I can find online). I'm trying desperately to keep an open mind and I understand that the formula will be considered necessary (he is naturally thin and is not easy to get to gain throughout his life). I think amidst all of this, his weight has been a main focus for me.
I forgot to ask if the fact that the tube is new and the body needs to adjust will cause any issue with eating meals? Nausea, cramping, maybe just an odd sense issue? Seems like it might take a bit of acclimation and that that might mean I need to approach making a few meals differently.
Anybody that has walked this way that has encouragement or advice to offer, I am wide open here!
Thanks!

Having a tube in the stomach should not make your husband have nausea. He wont feel the tube at all inside his stomach.

I dont think your husband will be able to go to work for at least 2 or 3 days after having the feeding tube placed. To be honest, most patients feel like they have been punched in the stomach so hard its like their breath has been knocked out of them.

There are hundreds of prescription formulas on the market. They provide a complete balanced diet. I guess it would be possible to create your own formula at home. My concern would be getting all the daily nutrients in and knowing the calories to ensure he gets enough every single day. I have a sensitive stomach too and it took a few formulas before my nutritionist found the right one for me. Other factors that come into play with a sensitive stomach are the speed and consistency of the formula. Usually slowing down and adding water will help make the formula easier to tolerate.

To me it sounds like his intake is going to be a struggle. Every single day he should be taking in a minimum of 2500 calories and 48-60 oz of water. Less and he will have a difficult time getting thru treatments. I cant stress those numbers enough. Ive helped hundreds of OC patients get thru their treatments and have seen what skimping can do. I was a skimper myself and it caused malnutrition, dehydration and ultimately a few hospitalizations.

The link below has alot of good info. Its still under construction so not everything in this section has been finished yet.

Feeding tube info

Joey, my husband got his G tube at interventional Radiology and he went home at the end of the day. His tube is apparently the new kind (we're talking about one and a half years now). He is fed through a large 60 ml syringe with a catheter tip. We don't need a pump and the feeding takes only five minutes. I was advised by his RO not to blend food as there was the risk of blockage in the tube (if it does happen, flush it with some pop, the bubbles will push whatever is blocking the tube through). If the insertion site is red, do three or four saline soaks a day. When the soak is done, do what Christine suggests, put some barrier cream and a drainage sponge on it. That will keep it clean and free of infection.

He is not a skimper, he eats like a horse! Always has. I keep telling the doctors they wish they could eat like he does :-). Right up until now that has been a good thing. He drinks more than 60 ounces of water per day, always has so, that's no problem.
Yes, I am worried and have been ever since this all began. I feed him all the time, he is getting tired of me shoveling food into him at this point but has only put on a couple of pounds.
I really appreciate the support and suggestions.
Thanks!

go for maximum calories (healthy calories) with minimum of effort. Try making him a shake in between meals. Add some protein powder, fresh fruit etc... it will help with healing etc.. hugs. and welcome.

Hello, Kris has had a PEG inserted twice now. He has had the current PEG for the last 2 years - although does not use it.
The first time it was done as an outpatient and I took him home about an hour after it was placed. The second was placed a few days after his salvage surgery when he was an inpatient.
Kris experienced absolutely no pain , he just described it as minor discomfort.
When he did need to use the PEG I used a 50 ml catheter tip syringe and pushed the feed through. As Gloria said, it took less than 5 mins. The key is to always flush after feeds with warm tap water. At least another 50 mls.
We used a drain sponge type dressing initially as there is always some ooze in the first few days. After about a week we stopped using anything around the flange/PEG as we found that this just keeps it warm and moist which is a great environment to encourage bacteria/infection.
About once a month now Kris uses a steroid cream to dissolve the granulation ( pink ) tissue that keeps on growing around the site. for this 24 hour period he does put a dressing on to mop up the goo.
Otherwise no problems.
I applaud your want to blend foods for him. Kris refuses to let me have anything to do with his nutrition and I have had to let it go. There are some sites dedicated to blenderised diets - I'm sure you will find them on a Google search. Many tube users use blenderised foods. The key is making them thin enough liquids to go through the tube and flushing very well after. i hope you do give it a try. I would advise a good blender such as the Vitamix.
Hoping all goes well,
Tammy

I had a PEG tube installed March 3. I had an extraordinary amount of trouble with it, mostly related to ulceration and infection underneath the external disk that is tightened against the skin. I found that the interventional radiology group didn't want to know me or my problems so I had to escalate the level of aggression. Finally, today, I was able to bypass the clown car of people saying "well, we don't know" and I got to see a doctor who immediately pulled it out (the retaining balloon, like every other component of the device, had experienced a catastrophic failure), and replaced it with one a bit more stout with a bigger diameter hose and a larger balloon. It was completely painless and I have a ton of confidence in it now. Nice and tight, no leakage, disk has air holes and stand-offs that hold it off the skin for air. Nice!

The moral of the story is don't take no for an answer. If you have consternations demand to be seen by someone. If you are not satisfied, and especially if it's leaking, don't stop until you see a doctor.

Hi,

If you don't have the PEG done, I would STRONGLY ask if there is any reason why he can not wait until it is really needed. Getting one in when it is needed is not nearly the big hoopla some make it out to be. He could very well get by without one. Many do. I just do not buy the "precautionary" approach. Get it if you NEED it.

I had a peg tube installed week 6. It only took three hours, then I went right to rads. However it took 5 days to get. Thoses were 5 rough days. Eating felt like swollowing razor blades. I got it because I could not get the liquids or cal and my weight was dropping. That made the bad situation worse. I had it for 7 weeks. I struggled with feeding all the way through.

Its a tough call. It will make getting food in easier but if it is used to early and you stop swallowing its hard to get it back. Learning how to deal with it when your not a wreak might be a least worst option. However everybodies different. I would like to see some stats on how many got it but did not need it.

Made it thru without any problems. G-tube and mediport in place. I guess this means we are as ready as we can be for the start of chem and radiation. Nurse comes tomorrow to "teach" us how to use and care for it. Will aslo bring supplies including a pump I know cause I asked after Christine suggested we might need one and was delighted to find out the doc had already ordered one.
He's in pretty good shape except he is starving and I am only allowed to give clear liquids until tomorrow, doc was very specific so I am following orders. I tell you this guy burns the calories like crazy and he is truly hungry. Hope we can make up for it tomorrow.
He plans on going to work in the morning and I am beginning to believe it myself :-) He really began to bounce back once he'd been home for an hour or so. Amazing!
Thanks for all the information and support!

[quote] I would like to see some stats on how many got it but did not need it. [/quote]I'd like to see stats on how many got one and had swallow issues?

Although Kris had a PEG placed before his chemo/rads, he was told that he must continue to swallow.
So while he did use the PEG towards the last weeks of treatment he also continued to swallow. A poached egg every morning and night as well as some Ensure. Our SLT and RO were emphatic that he swallow as much as possible every day.
The PEG was there simply to ensure that he did not lose too much weight. Some ensure went down it every day, some was swallowed.
Really it just augmented his own intake. We were very grateful for it.
Kris still has the 2nd PEG that was inserted during his salvage surgery 2 years ago .He barely used that one either. Nothing has been down that one for the last 23 months. Kris sees it as his lucky omen I think. He thinks that if he has it removed it will all go to cactus again. Sometimes I think it won't be until he is at the magic 5 year mark before he agrees to have it removed. I just change it myself every 3 months. No big deal.
Tammy

[quote=donfoo][quote] I would like to see some stats on how many got it but did not need it. [/quote]I'd like to see stats on how many got one and had swallow issues? [/quote]
Don, I believe it is 2 out of 10 who have swallowing issues. It may have nothing to do with not practicing the swallowing after the tube was fitted, in John's case, the scarring from the radiation closed his esophagus.

Don,

Most that have treatment for HNC have swallow issues with or without the tube. The rate which those that do get a peg tube, who will be dependent on it long term is 10%, depending on study, and many other factors are involved. The average time otherwise is 21 weeks to 7 months, dependng on study, and seems those that have it pre-treatment, as opposed to reactively, may be more long term dependent.

Seems this is a more recent concern with newer treatment options, and just in my time, 2009, it was recommended peg tubes be placed. I also remember about that time a big uproar with Medicare/Medicaid about the high incident of unecessary peg tube placements in nursing facilities, and the need to reduce that. I don't know if that crack down had any effect in the medical community all around.

The Peg Wars continue lol.

I had radiation to the left side of my head (tongue) and radiation to both sides of my neck.

I had a peg, didn't use it, had it removed 2 weeks after treatment. No real swallowing issues. (nothing that a drink of water can't wash down.)

hugs.

don't bait me - peg war - I'll pass... but you are right. I was looking to gather up some ammo. lol

i hate them things!

I don't like them either but for some people they are life savers -

Hated mine, but there was no way I coulda eaten for about 4 weeks with the level of mucositis and excess saliva I achieved. It would have hurt too much and triggered a lot of vomiting....

For me a peg did contribute a small level of discomfort every time my stomach was empty the sucker started moving around. Couldn't sleep longer than four hours.

I agree the nutrition is made of junk. I just don't have the energy to make my own. I found something on line but it was $8.00 a serving. I pay $8:00 a case. I have had issue with switching so I stay with the same. We can only hope someone will come up with something nutritious and affordable,

I have a question my husband has the peg he don't put formula trough this as he is just two weeks in rads) he has one session of chemo around 9or10 days ago he's been trying to figure out different liquids he can eat like some and other foods
He can take the liquid foods down better tolerate ) he seems to get nausea after the tube is flushed with plain water we do this everyday since it was placed in May ! I've give him zofran seems to help some is their anything elese he can take for this also what foods can anyone suggest liquid the whole foods taste like cardboard he says I hate seeing him filling sick thanks for any input we may recieve

I never had a PEG so I can't help you there but I'm sure you will get tons of help from others but it's advisable not to use the tube until it's absolutely necessary. He needs to swallow normally as much as he can.

What are some foods with high calories out their that can be used in the peg? I thought their was a forum on here with foods good to use with a peg just can't find one .... If they're isn't one may I suggest one I have a few options not many that's why I'm asking !! Thanks all

Sorry but there isnt a list of what foods can go into a feeding tube. As far as I know, a feeding tube is meant to use formulas. There are hundreds of different types available thru prescription and others over the counter like ensure, boost etc. Homemade foods can clog the tube. Plus with homemade foods, its hard to know exactly how many calories and nutrients are being taken in. Im certain homemade formula has to be healthier than the processed, canned formula.

I had one of those. I would recommend that you stick to formula. Some of the stuff (forget the name it extremely high in calories in a small volume). Being the experimental type, I used a blender, it worked well too�. but every so often I would plug up the tube and make a major mess trying to unplug it using pressure.
Just look at the diameter of the tube and realize that near the end there is an constriction.
If you decide to do this make sure it is finely blended. Others, (Charm, one of my heroes) used the PEG to "imbibe" some wine.

There is a Blenderized Food for Tubies group on facebook. There is a Blenderized Diet forum on yahoo. There is a forum at foodfortubies.org. It's not very active, but they have recipe ideas. drinkyourmeals.com gives free memberships for tube-fed folks and they have a lot of recipe ideas.

I've been using a blender (Blendtec or Vitamix) for about 5 years now. Yes, clogs happen, but they can be dealt with (I've never needed to go to the doctor just for a clog) and I feel so much better not putting all that sugar and processed food in my tube. Bottomline: blending food is very doable. If you have a tube long-term and there isn't a specific, medical reason you need formula then I think you should try blending your meals. Yes, that's just my opinion and I'm not a doctor or nutritionist but there are quite a few other tubies and parents of children with feeding tubes who feel the same.

Also, I do drink wine through the tube...probably more than I should...

I fully agree with Brian, I originally wrote under the assumption that you only use the PEG for a couple of months at most, if even that. If you have to use it chronically then this is a totally different issue.

Thanks Brian I was sure it was doable as I had read this from another site before I will use the links to follow up on some tube food ideas....