Feeding Tubes

[morgan617]

I am officially right at 100 pounds and my primary wants to put in a feeding tube. Sigh....I seem to be choking on everything anymore, which is not an inducement to eat or drink..

I am seeing my gastro in a couple weeks for my dilatation and I am sure they have discussed me. I think if I get below 100, it's going in. Has anyone found ANY liquids that aren't packed with carbs? Carbs are just killer for me and when you look at ensure and stuff, they are just loaded. I know these drinks are meant to put weight on and carbs do that, but i am looking for something low in carbs and high in protein.

My hubs says, look at it this way, you won't have to TASTE the stuff anymore, LOL...thanks, morgan

[wareagle]

Hey Morgan...man that really blows!!

I sent you a PM with some suggestions....I'm going to do some more thinking on it too.

Do you know any registered dieticians that you could consult with? Maybe check out GNC's website and see what kind of protein powders and weight gaining products they have.

Here's hoping you start packing on the pounds soon!!!

[calypso]

Morgan,

That stinks. I certainly wouldn't want a feeding tube. Are you mainly just having trouble keeping on weight because you are not eating, or is it because your metabolism is high? I know you have stomach issues, so I am guessing it's the first.

All I can think of is whey protein powder or some other sort of protein powder added to the low-carb formula of Carnation Instant Breakfast. When I was in a weight loss rut, nothing -- not even this regimen -- helped me much. But that's because my metabolism was so screwy. If it's simply a matter of getting the food down, the Carnation breakfast shakes are worth a try. I am not exactly sure of the sugar content and such, but I do know it's a lot less for the low-carb version. I don't mind the taste of these at all -- tastes like chocolate milk.

I would also consult a health food store wellness products manager, if you have anyplace near you, to see what advice they may have. There are so many options when it comes to powders/shakes/etc.

Sorry to hear of this. I'm thinking of you.

Amy

[futurehope]

The Atkins shakes are lower in carbs. They use sucralose instead of sugar to sweeten their product.

Also, Glucerna and another one that are used by diabetics are lower in sugar.

[Guest tearose]

OMG! this is not good!

How ever did you get to this place morgan?

I gotta get ready for my new job(...with me lately it's the "job of the month" since I haven't been able to stay in one yet but hey, I'm trying!) anyway, YES dear morgan, there IS a super meal replacement that has teensy carbs and is extremely high in protein...ask your pcp or gastro to look into the ROSS pharmaceuticals meal replacement products. It is by Rx but it saved my life when I could no longer eat and needed my gallbladder surgery...pm me if you need more info and I'll get back to you tonight!

It is a powder, a mix...white label purple and black letters...

hang in there, tearose

[Foofie]

Hi Morgan!

I'm so sorry you are having so much trouble. If it is hard for you to get out or you do not have a GNC close to you may I suggest an alternative?

I use Netrition.com

They have a variety of healthy shakes and I bet one that would suit you. I drink Egg White protein shakes daily and it seems to help quite a bit.

This website has great prices and the delivery cost is always very low.

Hang in there!!!!

[Dizzy Dame]

Oh Morgan

How did this happen? I'm so sorry that you're going through this

I don't know of any sports/nutrition drinks that are carb-free, but before you put that tube in, you might want to consult with a nutritionist. Perhaps he/she can come up with a liquid diet that will work for you that you can make in a blender. I just hate the idea of that tube!

Please let us know how things turn out.

(((((HUGS)))))

Lauren

[morgan617]

Thanks so much guys! Lots of suggestions I will look in to. As many of you know, I have esophageal strictures that I have to get dilated every three months.

But lately I have been choking on everything. Food, liquids, you name it. I can't believe I haven't given myself aspiration pneumonia yet!

Any way, I see my gastro in about 2 weeks for my next dilation and I'm sure he is going to be talking to me. I will discuss the above suggestions. Again, thanks for the input! morgan

[Sophia3]

Morgan, I am so sorry to hear about this latest problem of needing feeding tube.

So many drinks are either high carb or have fake sweeteners or alcohol based sugars that can trigger GI issues.

I hope you get some help and answers soon from the suggestions here.

Sorry you are going through this.

[momdi]

No clue if this would be helpful to you Morgan with your unique set of problems, but when Mike was recently in the hospital for a week and couldn't get anything down, they finally (after reglan-bad, bad) called in a neurologist who prescribed mestinon.

I guess it's used in a lot of POTS patients for its parasympathetic action, but it's also used in patients with myasthenia gravis for difficulty swallowing and to help avoid choking. Anyway, after advising Mike that he'd need to go to a nursing home, or get a feeding tube, or get an iv line, this was a true lifesaver.

[Guest sonotech]

Morgan,

That makes me sad to think you are having to go through this. I know this seems so basic, but have you tried using you blender at home, or maybe a "juicer" that you can put healthy food in to make into a drink.

I know you even have trouble swallowing fluids, so I think the juicer would be better for you. My MIL uses them all the time with fruits, veggies, whatever.

I really hope you can find something that works (and QUICK)!!

[nadine]

Morgan-

Don't have really any other suggestions, but thinking of you and hope you're able to find something that works!!

I would be happy to donate 40lbs. -lol-

Seriously, I am sorry you are going through this.

[baby_boy]

Morgan,

At the gym we sell zero carbs protien drinks. Theres 50grams protein in one milkshare, and theres calores in it aswell so your still able to survive.

I hihgly reccommend you visit a body building website, they have drinks for everything. They even include meal replacment zero carb drinks, which would suit you.

[michiganjan]

Morgan,

I am sorry to hear this. Can you usually do better getting food down after a dialation?

Is there no way to repair those strictures? Obviously I don't know what I am talking about here with the stirctures, but I do know what Jeff went through when his esophogeal tumor was too large for food to pass into his stomach and the doctor was telling him 2000 calories a day or go on a feeding tube.

He managed to escape the feeding tube. I talked with a nutritionist about how to get enough calories in him. The answer was that a calorie is a calorie and in order to get enough he had to drink Ensure or Boost and to that I added ice cream and chocolate syrup. He drank 4 of these a day.

I think it will be extremely hard to get the calories going low carb if you can't swallow solids. I don't eat sugar because I can get reactive hypoglycemia. I can't remember why you can't have sugar. If you could tolerate sugar it would be a whole lot easier.

On the other hand, I have been around several people who have had to have feeding tubes due to cancer. They depend on the tubes to get enough nutrition and they do work. They are usually a temporary fix, so if you have to have one, it can come out later.

Good luck and I am sorry I can't be more helpful

[dizzygirl]

oh my morgan! I'm so sorry!!!!!!!!!

Um I wanted to mention about glucerna.. I've eaten the glucerna chocalte PB bars.. they actually arent bad.. I dont have a box here at home (i ate them all.. lol).. but i havent tried the glucerna drinks yet.. I'm diabetic and have to back off the carbs.. so its worth trying

i wish i had something more to offer... I hate to say this.. as I'm sure that you are like a feeding tube>>??? my god. But maybe it wouldnt be such abad thing for a short time?

do they know why morgan you are loosing so much weight?? have you ever been seen by a potsy specialist? can you PCP contact dr.grubb or dr. robertson somebody and consult with them or something??

oh but to my point of the feeding tube.. i know its got to like really stink.. but maybe it would be helpfull in that it will help you gain some weight back?? and maybe hopefully in the mean time.. your PCP can start calling vandy or grubb's office.. and work with them by phone.. I'm most certain that you cant do a trip there.. I know that grubb works with docs by phone.. he's worked with mine before..

taek care morgan dear

love and hugs

linda

[morgan617]

You guys have all been great and have great suggestions! I appreciate it.

I can't do sugar or other kinds of carbs because it causes my potassium to drop into the low 2's, which is not a good thing... (if you want to know why, you can google periodic paralysis and find some great sites. I think there are about 3-4 of us that I know of that have this problem).

That's kind of the conundrum here. I don't eat carbs, so I don't gain weight, and have strictures, so I choke all the time. The only reason I'm not under 100, is because I do eat stuff I shouldn't, but it makes me so miserable, I just can't do it anymore. Jan, there is no permanent solution to strictures.

Thanks baby boy, I will check into those sites too. I can't do substitute sugars either, as many of you can't. I told the doctor, you can put one in, but you'd better find something my body tolerates or it won't make any difference. It's like meds, if they make me worse, I don't do them.

Some one mentioned midrodine I think? My bp is so high all the time, my doctor won't give it to me. I thought when all my weight fell off, my bp would get a little more stable, but no, that would have been too simple I guess. I love my body....I love my body...

[dizzygirl]

yup totally get the carbs and sugar deal my dear morgan!..

me and carbs ======bad bad bad!!!

gesh! i wish that there where something that i could think of to help you.. maybe i will scour the internet and find something... hmmmm..

well here is something i can do!! sending you some BIG bear HUGS!!

take it easy dear

love and hugs

linda

[Sunfish]

hi morgan -

many things have already been mentioned so i don't know what i have to add in that regard, but just wanted to send some empathy your way in terms of eating difficulties. as (i think?) you know i'm on TPN these days and will be for at least the near future. swallowing is the only part of my GI tract that does work so perhaps if we combined our bodies we could get one working GI tract?

obviously i'm sorry that you're having to consider a feeding tube - that's a given (i'd hope). i've learned quite a lot about them as of late b/c at some point we may try j-tube feedings &/or g-tube venting for me...either for meds or if my intestines are moving along well enough for nutrition/hydration instead of using a central line. so...if you do end up going down that road the Oley Foundation is an excellent resource. it is a nonprofit organization that supports "HPEN" consumers (HPEN = home parenteral(IV) &/or enteral(tube feeding) nutrition). they have a newsletter, 800# with support, conferences (with videos that can be borrowed), etc. and it's all free. the website is http://www.oley.org .

hang in there & good luck with your discussions with your GI doc...

melissa

p.s. i think the med someone mentioned was mestinon (rather than midodrine)...mentioned b/c when swallowing issues are muscular and or otherwise motility-related it can help. it helped my tummy/intestines lots last year (i.e. stopped discussions about feeding tubes/TPN) but it's no longer doing the trick...

[Jacquie802]

Morgan,

Is there any way your doc could put you on some Potassium supplements, that way you can atleast put on some weight?

[Sunfish]

jacquie -

with periodic paralysis potassium is not always low (though can tend to run low) so supplements don't solve the problem. if you do a search for it or look at the links that morgan inserted it explains a bit more, but essentially it's significant dips in potassium that are sometimes unpredictable, sometimes triggered by specific things (i.e. dietary). hope this helps explain...

melissa

[Lukkychrm42]

Hi Morgan,

I'm so sorry you're dealing with this. Obviously you want to get nutrition, but TPN or PPN does NOT sound fun. I understand about the sugars in liquids... When I am drinking only liquids, it seems that all there is, is juice, sodas, gatorade, and the like.. To be able to get other nutrients, vegetable broth and miso broth might taste good... it's still not much protein or things like that, but at least it's something different. I don't do the ready-made shakes cuz I don't do dairy, but back when the low-carb nonsense was popular they made some shakes/meal replacements with either why or soy protein I believe, and if you're brave, maybe you could try those? If it's artificial sweetner, I don't know how you do with that... Would watered down milk or soymilk be bearable?

I hope you and your doctor reach an agreement, whatever it may be... and that you're feeling better soon.

Lots of hugs,

Megan

[sstephan]

Hi

My husband has had a stricture that he has to get re-checked often. Maybe the feeding tube is a good idea right now. My husband also used to choke on everything he ate and ended up with a Mallory Weiss tear. At least this way you can be sure you are getting nutrition without the risk of choking.

The whey protein drinks are a good idea. My husband drinks them for bodybuilding and likes the taste. They are protein rich and available at most health food stores.

Thinking of you

Susan

[Sunfish]

hello again

morgan -

just another place to look for some ideas if trying to avoid the feeding tube:

http://www.hormelhealthlabs.com/products.asp

i didn't have a chance to go through & check out the sugar/carb content of things but in an effort to save time/energy you could perhaps just call them and ask flat out? i think they have a high-protein broth of some sort...

megan et al -

just as a quick clarification (since i'm living it these days), a feeding tube isn't the same as TPN &/or PPN. a feeding tube enters/uses the GI tract, entering either the stomach or small intestine (directly via a surgical incision or via the nose). this is also known as enteral nutrition. TPN (total parenteral nutrition) or PPN (partial parenteral nutrition) is intravenous feeding through a central line of some sort (though PPN can be done for several days peripherally). if at all possible tube feeding is preferred as it still makes use of the GI tract, is much less expensive, is much easier on the body (doesn't stress the liver), doesn't have same degree of infection risk, etc...

melissa

[Jacquie802]

Thanks for the explanation, Melissa.

[JacobyD]

Melissa, thanks for the Hormel link. I'm going to forward some of that info on to my GI doc.

Hey, Morgan. I think you already know I've been on and off PEG and PEG-J feeding tubes for about 5 years. Swallowing and throat problems have been my #1 symptom and I've been on a PEG tube full-time for about 3 years now. I had a PICC line (IV) for about 6 weeks at one point. I went from 204 to 144 pounds over the last 16 months, and have only just recently gained about 10 pounds and am back around 155. I need to be at about 175.

My current "diet" consists of 5 cans of Glucerna per day (no sugar and about 225 calories per can) and 1 can of Ensure Plus (12 grams of sugar but about 375 calories per can). I am also able to eat small portions of fresh organic almond butter and drink thin liquids (lots of water). The almond butter is extremely high calories and is natural. I also use a juicer to make sure I get carrot/lemon/celery or whatever I can when I can tolerate it.

I still choke quite often when I try and eat, but have improved slightly. The biggest drawback with my feeding tube is that I am literally tied to it all day and it makes getting around very tough, even though I have a small pump and backpack. Its all just a pain but is well worth it if you need to gain weight and get nutrition. You can't even begin to heal or feel well without it! Good luck,

Dan