Feeding Tubes

[morgan617]

That really is a good site Melissa! I'm going to give it to my GI doc and my PCP. Thanks!

Jacquie, I do take potassium supplements, but as Melissa stated, they are never assured to be helpful. I take three a day just to stay at the very bottom of normal levels.

But your levels can be perfectly normal and just barely drop, still be in the normal range, but you paralyze anyway. It's pretty miserable. The best treatment is just low to no carbs, as they cause a chain reaction in your body that affects the potassium. If you have this disorder obviously. Normal people can eat lots of carbs and just get chubby. I get paralyzed if I eat more than 30-50 carbs a day.

Dan, I have tried the glucerna, but it just makes me feel really weird. I have tried about a dozen different brands, but something in them makes me sick. I'm not sure if they are too rich or what.

I'm not really upset about getting a tube. It actually will probably make my life easier. My husband and I realized yesterday that I hadn't been outside, let alone gone anywhere in at least a week. So it doesn't matter if I'm "chained" to anything. Oh I just remembered my son's birthday. We were there for 30 minutes and he lives 10 minutes away, and I fainted on his front lawn, go figure.

So, it's really not as bad as it seems. it's just one more thing in a whole lot of things. At least I'm getting listened to and believed, which for a very long time wasn't happening, except by my pcp and gastro.

I think, aside from finding a feeding I could tolerate, the hardest part will be finding a doctor willing to put one in with my health conditions. Thanks to everyone for their input and I will keep you posted. I get dilated July 7th, so I will surely know by then.....morgan

[Guest Julia59]

Morgan, I hope you are able to avoid the feeding tube. I hope the dialation helps.

I don't know much about protein drinks ect.---only that I tried the Ensure in 2001 when I was getting too thin, and it made my gall bladder hurt---or at least that is what it felt like. I just think it was my IBS---nothing really to worry about, but I stopped taking the drinks. Thankfully, I was soon able to pick away at foods again......

I just wanted to chime in and tell you I"ll be rooting for you, and saying a little prayer that you can avoid the feeding tube.

HUGS

Julie :0)

[morgan617]

Julia, maybe that's part of the problem too. I have a lousy gall bladder. 15 years ago the ejection fraction was less than ten. The last scan I had showed wall thickening, lots of sludge, and multiple stones.

My doctors say I am too high risk to take it out unless it starts doing damage to my liver or pancreas. I have attcks 2-3 times a week, but they said just deal with it, no one will remove it. So between, choking, strictures, gall bladder, intolerance to carbs, and any kind of artificial sweetners, I'm doing great....

[nadine]

Morgan-

I hope that you will somehow, with feeding tube or not, be able to at least get enough strength to get out without fainting on your son's front lawn! My goodness. I am sure your family is used to this, but still frustrating for you I am sure.

Sunfish,

I also thank you for the website. My situation is not the same as yours or Morgan's, but at several times in my life, I was unable to eat and keep food down,was losing weight, etc. -so the information is handy should I run into this again. Thanks

[DancingLight]

dear ilovemybodymorgan,

just wanted to chime in quickly--and i don't know if this will help or not as it seems you have gotten really great suggestions already.

after my gb surgery i drank those juice boxes i've talked about before from Scientific Health Solutions. They are called Pediatric EO28 and are orange-pineapple flavored....they're for people with severe GI problems and are also 'complete nutrition in a box'...my POTS doc prescribed them. i don't know how they pan out though for carbs and protein in terms of what you need. they can actually be used in a feeding tube situation too.

i do hope maybe some of the suggestions here will be of help and possibly keep you from needing a feeding tube! i am sorry you are going through another hurdle...

emily

[dawn]

Morgan,

What next????????????? I get on the protein powder routine sometimes. I use orange juice and ice cubes mixed with the protein powder in the blender. When I was working I would come home at lunch and whip one up while I let the dogs out. I can't do milk products.

Think of you often.

God Bless

Dawn

[yogini]

Morgan,

I don't have any advice, but hope you find a way to stop the weightloss.

-Rita

[goldicedance]

Morgan, I have an idea of what you are going through regarding your escophogeal (spelling???) strictures. I had a beloved uncle who suffered from this for many a year...and that was back in the 60's-70's. He used to eat baby food when things got bad.

Have you tried the whey protein mix with soy milk? After gastric bypass surgery, my husband drank plenty of these whey protein drinks to get the calories in when he couldn't eat real meals.

I hope that things start looking up and that food starts going down!

Lois

[momdi]

Hey Morgan,

I think you replied to my post, saying *someone mentioned midodrine*. If it was me, I mentioned mestinon. I don't think it affects BP as my son has high BP and it hasn't made his any worse. Actually, since it has parasympathetic activity, if it does anything to BP, it should lower it. Try this site...

http://www.mestinon.com/info.jspf

Mestinon was the miracle drug which got him out of the hospital last month. They were threatening a feeding tube, a pic line, or a nursing home (nice choices ), when they finally called in a neurologist who prescribed the mestinon. He was able to start swallowing food again almost immediately. His problem followed a mild case of gastroenteritis (with a heavy case of a POTS reaction), so it sure isn't the same as esophageal strictures, but you never know.

Amazingly, Mike hasn't had any of the side effects to date, though he is taking a low dose - a 30 mg tab split in half, which gives him a dose of 15 mg 2x/day.

A yummy protein powder that has zero or almost no carbs and no *junk* is Solgar's Whey to Go, vanilla flavor. I used to own a health food store/juice bar and it was our most popular protein addin b/c it was so yummy and smooth, not grainy like some protein powders. If you could add some type of essential fatty acids, either flax oil or fish oil, plus some ice cubes, it would make for a nice high calorie drink. You could easily find it online or at a Whole Foods type of store or health food store that sells Solgar brand.

Good luck Morgan. Hoping you make it through this one.

[Sunfish]

glad that some of you found the hormel link helpful.

here's one more since there seems to be an interest:

http://www.novartisnutrition.com/us/productList

they make boost, boost breeze, etc but a variety of less known/ more specialized products as well.

melissa

[Jacquie802]

Morgan,

What ever the docs decide, I hope you start to feel better and are able to get some food into your system.

[morgan617]

Yes, sorry about the med mix up. My brain on "live" I have been looking up a lot of this stuff. It's all been very interesting. Who'd have known there was so much stuff out there?

I need to look up mestinon. I have never some of the drugs a lot of you take. Mostly just anti hypertensives etc.

I should print up some info on mestinon and give it to my pcp that I see on the sixth and my gastro on the 7th.

There must be something out there. It would be nice not choke all the time. I think someone asked what kind of tube. He said a jtube. I at least have experience with these. Not on myself, but it wouldn't be any different would it, to be on the receiving end.

Will just have to see how it goes. morgan

[dizzygirl]

forgive me if I'm wrong here.. But I though mestinon WAS suppose to help boost up BP. while its not it primary function for the drug..but i cal recall being told that its a "smart" drug that raises BP.. but allows you to be able to lay down with it.. unlike proamatine.. you shouldnt/cant lay flat with it for 4 hoursa fter taking it. its part fo thereason i was put on mestinon so that i could lay down on it.. and to treat pots overall

Mestinon is a miracle drug for some.. and not for others...

i hope morgan that you find something that works well for you.. and that you begin to put some pounds on.

Oh yes morgan I was in the store today buying a ballon! glucerna drinks where right next to the balloons .. well i looked at the carb and sugar intake (diabetics are suppose to be able to use this) but the sugar % is around 28 grams and the carb % was ibelieve 38 grams..

I think i read that you only consume under 50 grams of carbs a day? i wanted to mention it to you.. as i know that i mention glucerna.. without knowing the ball park of sugar and carbs.. i guess you probably could drink one a day.. but that wouldnt leave alot of other room for anything else.. they have chocolate flavored-organe cream.. and a few other flavors..

good luck dear

[corina]

morgan,

i know i'm late but i wanted you to know that i'm thinking about you and this . . . feeding tube. i know that you are a trooper and you have enough (will)power to be on the receiving endof a feeding tube, but i would much more want to see you back in your job as a nurse HELPING others with a tube. bit brain fogged today, hope you know what i mean.

corina