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Loosing Weight: PEG Tube

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I have lost about 5 lbs over the last month in spite of eating quite well. I did have a boost in my thyroid meds and I do not feel freezing all of the time. Perhaps, I'm just burning more calories and need to adjust intake. I really would  rather avoid the PEG Tube, if at all possible. Did you guys have trouble taking food by mouth when you elected a PEG? I really have little trouble at the current time. And did the PEG stop the loss of weight? Of did the weight loss continue in spite of using a PEG? And what about the costs of the foods that go into a PEG?

Just looking for some general PEG info, I guess. Rick.

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

Rick,

 

The thing about the PEG is (after you catch your stride) if your still losing weight pour in more calories.  I am not the best example of food by mouth during or after PEG use.  I despised food so much that liquids were my game.  When I was on the PEG wagon, rads and chemo kept putting cases of Jevity in my trunk.

 

I see you are having a little nice weather, maybe which is why you are warmer?

 

Nice to hear from you,

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

I have recently been put on a peg tube due to Dysphagia(a swallowing disorder). I had started a weight loss program three years ago and lost about 45lbs on my own then since last may I kept losing and was eating smaller amounts due to dental issues(all of this stems from NPC treatment of rad and chemo 12yrs ago) but I lost another 15lbs and like 3 pants sizes. Being female I was thrilled, then in Dec I was hospitalized for aspirating pnuemonia, my swallowing had stopped. I was completely malnourished and didn't know, it was like being anorexic without vomiting, I was eating but never digesting, it was going in my lungs. Don't put off peg tube if you need it, your nourishment is incrediablly important right now. Are u vomitting a lot? That could be another cause. Talk to your doctors, see what the cause is and make your decision with theri input.

God Bless,

Rachel

wolfen's picture
wolfen
Posts: 1209
Joined: Apr 2009

We're just getting started with the G-tube, so not an expert, at all. Hubby has lost 50-60 pounds since November. He completely lost his appetite because of the nasty tumor drainage. He would just drink a few breakfast drinks. Two actual bites of food would not stay down. He's still swallowing liquids and small pills and now G-tubing it. So don't have any experience with tubing while trying to maintain oral food.

Six cases of tube diet were delivered with the pump and various accessories. It's my understanding that insurance covers this food because you're in the care of a dietician and it's vital for your survival. I've mislaid the invoice, but I think the price was around $210 a case. Of course, realize this is a Home Health Care price(inflated), and this is a diabetic diet. You can drink this stuff, but it tastes like krap, so while he's still swallowing, he drinks Glucerna shakes, not as many calories as the tube stuff so I work out a calorie exchange. The Glucerna, however, is not insurance covered.

He's not near his goal set by the dietician for calories and ml's each day, but at least his weight loss has slowed down.

Hope this helps a tiny bit. I know our more experienced friends will have lots of answers.

Luv,

Wolfen

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

I didn't really have a choice. At my first visit my Chemo Doc told me I had to have one because a point in time would come when I needed it and he wanted it done before treatment began so I wasn't try to recover from the surgery while getting Chemo.  Anyway, I honestly believe that at the very least, it saved me trips to the hospital for fluids and/or nutrition.  I was stubborn and didn't use it in the beginning when I couldn't swallow well and so lost almost 20 lbs in a week.  Now I'm not a big guy (5'7) so 20 lbs is a big number for me.  Add to that I got really dehydrated and constipated all because I was stupid.  Once I started using the tube all that bad stuff went away.  I still swallowed water as often as possible to work my muscles but, even now 5 weeks post treatment, I cannot get solid food past the swelling in my throat.  My speech therapist told me it won't be long, but without the tube I would be sunk. 

As with everything here, others experience may vary.  But let me ask it this way, why wouldn't you get one if only for the peace of mind of knowing that if the $hit hits the fan, you're covered?

Wishing you the best,

Joe

Ladylacy
Posts: 515
Joined: Apr 2012

My husband had been loosing weight and he has a peg tube.  They finally checked his thyroid level.  He was on too much thyroid medication so they adjusted it downward.  He went from hypo to hyper thyroid.  In the last 2 months since the adjustment he actually has put on a whole 2 lbs.  Better than loosing 2 lbs, I know.

Sharon

boardwalkgirl
Posts: 263
Joined: Jun 2012

I had my PEG inserted the Friday before I started chemo and radiation on Monday. My doctor didn't give me much choice as I did not want one at all but he insisted that I would need it and it was best to get it before you start. I started using mine a little at a time a few weekS onto treatment. Even though I never was totally dependent on my tube as I continued to eat something by mouth thru out the whole treatment. I lost about 20 lbs. during treatment and have lost another 20 since. I had weight to lose though. I had my tube removed about 7 weeks after I finished treatment.

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Rick,

Five pounds in a week is ok, if you don't do it again! I am so sorry to hear you met with another challenge. Sounds like you got to the point where the body's fighting hard, which is a good thing, and I hope those experienced can help you. Dan's a TPN IV guy, he missed the PEG boat, and was sorry after - so glad to hear you at least got on the right bus and are trying hard to keep the weight loss at a minimum.

Thinking about you always, Kari

 

 

phrannie51's picture
phrannie51
Posts: 3851
Joined: Mar 2012

The second you said 5 lbs in month, I thought of Kari's hubby, who lost that in 2 or 3 days.....5 lbs in a month is what weight watchers strive for, so that's not a bad loss....unless you're skinny to begin with, and don't want to lose any more.  You probably are burning calories faster due to treatments. 

I didn't have any trouble what-so-ever eating by mouth with the PEG tube.....I got the tube in April, but never actually needed it until July.  At that time however, I was also burning calories at an excellerated rate, so was still losing weight regardless of what I poured down the tube.  I was skinny to start with (97 lbs).....but from beginning of treatment to the end I only lost 16 lbs total (not bad when you consider some folks loose 30, 40 lbs......some even up to 100 lbs.  The plus for a tube that I can see if you're having trouble swallowing is.... that you can eat what you eat normally, then pour down something super high in calories to supplement that....Quick and easy way of packing in more calories....no fuss no muss.

p

 

MarineE5
Posts: 762
Joined: Dec 2005

Rick,

The easiest way for me to control my weight during treatments was this basic method of counting what I needed to take in each day. What ever weight you want to be at, take that number and mulitply it by 12 and that is the number of calories needed to maintain that weight. For me, I feel better at 200 lbs. so the math is easy for me, 200 X 12= 2400 calories a day to keep that weight. If I get on the train for the sweet stuff and start to gain, I know to cut back a bit.

During my treatments, I had a PEG as I also had it after my surgery to remove part of my tongue, no food by mouth for some time. I used the nutrin 1.5 that the insurance co. sent to me. It had about 275 calories per can or 325, I can't remember, but I needed to take about 8 cans a day. I was a few pounds over my goal weight, so I took in 6-7 cans a day until I reached my goal and kept at that weight during radiation. After I received the Nutrin 1.5 from the insurance co., they called the next day to say it wasn't covered and I had to pay $54 a case, I received 10 cases to start. I found it on line in NY for $19 a case and told them to pick theirs up, they adjusted their price....

My Best to You and Everyone Here

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Thanks for all your sound advice. What doesn't come thru are the complications of the PEG: infections, pegs coming out, the constant cleaning. Which all goes to say it is best to avoid a PEG (as it is best to avoid any/all medical intervention) if possible. That's what I'll be trying. However, avoiding the PEG in my case may not be an option.

I had my thyroid hormone increased and this has increased my metabolism. I'm not freezing cold any more and wear fewer sweat shirts (used to wear 3 sweat shirts and a jacket). So I must be burning more calories which could account for the weight loss.

Also not at all hungry. Can eat but have no real drive to eat. That's a challenge in and by itself.

Well thank you all for responding Rick.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

You are so right about a challenge to eat ! I have been overweight all my life because I love food/ loved food ! I have lost 60 pounds and been out of rads 4 months and I have to force myself to eat . I never dreamed I'd have to try to not lose weight and no one understands if they haven't been thru it . They  say just eat it weather it taste good or not ! :(

Peggy

wolfen's picture
wolfen
Posts: 1209
Joined: Apr 2009

You are right on about people not understnding. I am guilty because, even as a caregiver, it's hard for me to imagine not having an appetite, although I watched my daughter go through it and now my hubby. My daughter was 100 lbs. dripping wet and got down to about 80 lbs. before she forced herself to consume small amts. Her cancer is not H&N.

Hubby, on the other hand, weighed 149 lbs. over 40 years ago when we married(too skinny). Over the years, he got up to 250 lbs. despite trying desperately to lose weight. THis is not the way he wanted to lose it.

His calorie goal is supposed to be 2,160 which will be difficult to attain unless I raise the ml's per hr. on the pump or feed him 18 hours a day. The only guideline I have for ml's is max. of 100 per hr. Plus, I know it's important to get extra water during rads and chemo. He also thinks he'll blow up like a balloon. So we need to have another discussion with the dietician.

Am wondering how many of you used a pump vs. the syringe for feeding. I used the syringe once and it seemed to upset his stomach consuming a can in a much shorter span of time. So new to this, I hope I'm doing everything right.

Luv,

Wolfen

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

My caregiver (husband) said that to me one time in the beginning and I have thought it when a very good friend of mine's husband couldn't eat so I know most people don't understand. I have needed to lose weight since I was 14 but I always said I didn't want to lose by being sick . I could stan to lose 20 more and I hope I can keep from gaing back what I've lost but it sure is a hard way to lose it !!!The only experience I had with a PEG was 10 years ago after my Mother had a stroke and couldn't eat.So I don't remember much but they taught me first to feed her Bolus and it was 1 can at a time several times a day , then for some reason they put her on a continuos feeding and I fell like that was better , except for one time right after we started using the drip I forgot to close the clamp and dumped the whole bag in her !! I felt so bad and so scared . I called the Nurse and she told me to set her up and she came out to my house. She did trowe up a little and the nurse checked her lungs and she was ok !! I NEVER forgot again.So I think slower is better. Sorry for being so long winded and off subject.

Peggy

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I had a peg tube placed the same week I began treatments.  I still lost 70lbs during treatments and to date have lost 90lbs ...I'm maintaing my weight, not gaining or losing. 

I was a very big guy going into treatments (320lbs) so as you can see I had plenty to lose.  I also think that the bigger you are (on any weight plan) the faster / easier it is to lose weight more rapidly.

I was not able to use my throat / eat about 3-4 weeks into my rads.  It was not so much the taste (which of course was awful) as it was the pain /swelling.  I did try and do the swallowig exercises and neck stretches, but eating was out.

I lived on Ensure plus.  It was a bit rich for me so I would mix it half and half with 2% milk and push it down the tube.

You sound good in your post, glad to hear you got the thyroid tamed :).  I do hope you are feeling as well as you can / and I hope your treatments are doing some good stuff on the "c".

Best,

Tim

mikeev
Posts: 19
Joined: Jun 2012

Hy i was having trouble eating and swallowing, had a PEG fitted before treatment but still lost weight, found that it was very hard to keep up the feeding using only Ensure 8 cans per day, saw my dietician and was put onto Jevity 1.5 cal using a pump with a 12 hour dose overnight at a rate of 125ml/hour giving me an intake of 1500ml which was equivalent to 2250 Calories. The main problem I found using the pump was that every time you had to get up in the night you had to uncouple yourself, on a couple of occasions the PEG connection came apart and I was soaked in Jevity (Smell was really bad), I had my third peg fitted after about 6 months but was not able to make a good connection with the pump had to tape the connections together, at this point I was managing to eat a lot more semi solid food and soup so decided to discontinue with the PEG feeding other than the occasional top up with ensure,then persuaded the dietician to let them remove it since then I have kept my weight at approx 150Lbs this is the weight I was when I started Treatment, my goal is to get back up to about 180lbs which was my weight prior to the Cancer starting but it is very hard putting on weight compared to losing it.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Peggy,

I can't say I have experienced what you are going through, but I do understand, I have seen it do the damage in weight loss. So when people say "just eat it whether it tastes good or not"... I usually try to explain that our bodies are made to survive. In a very scientific way our bodies are geared to save us from being poisoned by food that has gone bad. And if they ate something that smelled right, but didn't taste like it was suppose to, but rather tasted bad, could they really eat it? And then I get a lot of "oh's" in response. Or, I didn't think of it that way. It's against our instincts to eat what tastes bad. None of us would be here I would think if that weren't the case.

Not sure if it will work for you, but I have converted a few, but you are right, others are cold about it. No one is hungrier than Dan, but can't get it down. Adding insult to injury is rude.. sorry it happens to everyone.

Kari

Aussieuke's picture
Aussieuke
Posts: 6
Joined: Sep 2012

I was given the peg straight up and at first thought ,what a pain. Not using it was best option at start. Then had some attempts with supplement that were banana flavoured,well,supposedly,that put me off again.When neck became sore and eating a problem rang the supplier for the supplements and arranged two other flavours.Chocolate and Vanilla, what a savior they became.Either single or mixed as I normally had two bottles via syringe. Weight loss was a problem until I was able to have four feeds a day (eight bottles a day)(sufficient calories for body not to loose weight  as long as you don't try to do heavy weight training to regain muscle stamina,then you need heaps of food).So, in short the feeding tube can save you and only three weeks ago had a infection on the opposite side of throat so stopped eating (two plus months since rads finished),kept up salt/alkaline washes plus meds via throat but went back onto bottles.Infection cleared up in three days.Off the peg since.You do need to keep swallowing function going but the peg allows you some flexability.Kept it short as  I hate long winded stories.Oh! do not forgo flushing and cleaning as penetration can be source of odour as can the tube itself,so keep up the flushes.Hope it helps. Steve.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

when I was going through treatment, I went from 220 down to 129.  Cancer has a great diet plan.  After treatment, I went back up to 150 which is what I currently am now.  When I went back on tube feeding after the failed surgery in 2011, I started off with six cans a day of Isosource 1.5  (375 calories a can)  After awhile, my pants started getting tighter so I dropped down to five cans a day which fits Marine's formula perfectly.  Rick, if you are on Medicare and tube feeding is your only means of nutrition, they pay the total bill.  It doesn't cost me a cent to get five cases a month.  I was mistakenly sent 4 cases of Nutren which Marine mentioned earlier.  They replaced it with my brand.  I had to use one of the cases though while they were doing it.  I found it to be more watery than Isosource and it didn't say for tube feeding.  It had the same amount of calories but the vitamin and mineral amounts were different.  Good luck.

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I've never understood the diff between a PEG and G-tube. I had a G-tube which was thin and so far as I know only took liquids. When I wasn't eating any food, I put Ensure, Boost or Wal-Mart brand protein drink in it. I would estimate cost was about $7-$10 a day out-of-pocket for me.  Through the couse of my tx I am down about 65 pounds but I had it to lose.  It was easy to use and I never had any issues with it. Other than protein drinks, my husband would crush my pills or I got them in liquid form and those went thru the tube too but never any real foods.  

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