weight - Discussion - AGMD GI Motility Disorders Support Community

weight

By twinkletoes1
Posted January 19, 2008 at 12:10 am · 10 replies
In Nutrition

In the last 1yr I have lost about 41 lbs and 6 pant sizes, i'm having a hard time cooking due to the smell that makes me nausas,almost everything i try to eat has begun to make me sick. i would like to gain more weight , it seems to come off faster than it goes on, although im only 5'1" i feel way to small for what i'm used too. rice seems to be o.k and sometimes chicken, more liqued than anything. maybe if someone has an idea of valued nutrition that has helped them i would like to know.maybe you could email me.

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By Charlotte1
Posted January 20, 2008 at 5:31 am

Hi Twinkletoes,

I think that all of us have an issue with nutrition. I have lost over 70 lbs since Aug of 2007 without trying. I needed to loose the weight, but at this point my nutrition is suffering. I have hair loss, poor skin and beginning to get ulcers that will not heal. I have looked at several things to see if I can include them in my diet and so far it has not been a huge success.

I am currently on liquids. I am trying to get some fruit in my diet by doing smoothies with juice. I am using Slim Fast and Carnation Instant Breakfast because I can tolerate the taste of those but not the taste of Boost or Ensure. If you locate something that works for you, please share.

Oh, by the way, WELCOME TO THE GROUP.

Charlotte

By Novagrad
Posted January 20, 2008 at 9:50 am

I'm only 84lbs and am 5'3" as well. I have a feeding tube. Can you take oral supplements like Boost or Ensure Plus? There are other ones on the market that are specific for GI problems such as Perative or Peptamen and a lot of them have high-calorie options. If you can take in what you're taking in already and supplement them with three or four of these drinks per day, it may help.

By twinkletoes1
Posted January 20, 2008 at 7:51 pm

i have not heard of perative or peptamen, where can i get some to try although i'm not to skinny yet, the 41lbs i have lost has happened in 6 months i am 5'1" and 115 not to bad if you look but to skinny for myself i feel anorexic and bulimic (due to condition ) due to the rapid weight loss my docter has given me a couple options like a tube, removing my large intestine but i would rather be miserable i guess, i feel like im to young for all of it. it is sometimes hard even for the liqued it feels so heavy in my stomach, did you get like that?

By Novagrad
Posted January 20, 2008 at 8:25 pm

You can actually purchase it from Amazon.com. I use Peptamen 1.5 which has more calories per milliliter than regular Peptamen. It's not cheap, though. And they don't taste good, but I think Nestle (who makes Peptamen) makes flavor packets. I think you can also get it from Nestle.com. My insurance does not pay for it, unfortunately, but I'm going to try to go through the Oley Foundation to get some donated to me. Honestly, a feeding tube is not so bad. At least the "button" isn't because it does not stick out. But don't put yourself through constant misery. That kind of weight loss in only 6 months is a big deal. I hope we can give you some support so you can make the right decision for yourself! Good luck! :)

By Novagrad
Posted January 20, 2008 at 8:28 pm

Yes, I do feel very full after only a little bit of liquid. If I don't ease up, I throw up! :(

By Mags1
Posted January 22, 2008 at 11:05 pm

Hi Twinkletoes. Welcome to the group. We have some wonderful people that contribute to the pages here so you may learn something that might help you. I too have lost a lot of weight 70lbs, I am 5.7" and take a size 6 also so you are not alone. I can't give any advice on what to eat as just about everything makes me sick but I do get a little fruit in daily and a cereal that has 43percent of the daily protein requirement, before my daughter found the cereal for me I wasn't eating any protein at all. Have you tried the protein powder? I have but couldn't tolerate it but a lot of people do. I just plod on and try to stay happy. Good luck to you. Mags

By twinkletoes1
Posted January 25, 2008 at 10:51 pm

yes i have tryed the protein powder, its to heavy for me.gayla who is also on here gave me some good advice i,m looking into. i noticed your profile about gastric pacer? do you have one? my insurance would not cover it doctor wants me to have it but not ins. fought them 5 times, denial after denial , attorney said they can do that! i've started new meds hopefuly they will help, i did however gain 1 lb. not a big deal to some but for me it is,not sure if it was the two good days or clothes i was wearing , either way i will take it.i am still drinking the ensure it takes half the day to drink one but i get it down. good luck and your right the people on here are great !

By JEM
Posted February 27, 2008 at 11:32 pm

If you cannot drink Boost or Ensure or the protein drinks, maybe you could tryResource Breeze. It has 250 calories and 9 g protein. You can buy it over the internet. I could not tolerate the boost or ensure or even milk about 2 months ago. The Breeze helped me to maintain some of my weight.

By Kozush
Posted February 29, 2008 at 4:32 am

Honestly if you're losing a lot of weight and your functionality is suffering from lack of nutrition and dehydration, a tube really isn't a bad option. I've had a GJ (not button) for nearly a year and although I can't tolerate tube feeds anymore (my small bowel has motility problems as well, and theory is my entire GI system is just slow) I get most of my medication that way. That's the only way we can make sure the medication is getting where it needs to and actually works. I've had an endoscopy where they found days worth of pills in my stomach still! That didn't really help me, now did it?

As far as when I was tube feeding, I was using Peptamen 1.5, and it is VERY expensive, especially if your insurance won't pay. Thankfully mine did after talking to my doctor, they'd pay for regular formula, but not semi elemental. Now while I was in the hospital, they tried me on a fully elemental formula, Vivnoex T.E.N and my insurance completely refuses to pay for it...but I was only able to tolerate one packet (this is one of the only formulas that don't come ready to go, you have to add water and shake it up) a day and I was doing it through a gravity drip instead of a pump, because pushing things through my tube causes more pain, nausea and my belly gets very distended...letting it go in by gravity very slowly was a bit easier.

Someone else mentioned Resource Breeze, there's also Enlive! by the makers of Ensure which comes in a nice Apple flavour. They're clear low residue (no fat, no fiber) nutrition drinks, I tried to drink them before I wound up with my tube, but didn't tolerate it too well either, however the Orange from Resource and the Apple from Enlive! Were pretty good...don't be fooled though, they look like juice, but are much thicker when you drink them! Drove me crazy that every time I took a sip my brain kept expecting juice!

One more thing you might want to consider is Pedialyte. I haven't seen people mention it, but my nutritionist while I was living in NYC was quite adamant that I take in at least 1 liter of Pedialyte (or generic version) a day. I didn't generally succeed, but I managed to keep enough in to keep my electrolytes pretty decent, which is very important because low potassium, resulting from vomiting, can cause heart arrhythmia, leading to a heart attack which can kill you...this is regardless of age or existance of pre existing heart condition...so everyone should always watch their electrolytes!!!

I had my PICC line pulled, but I'm seeing a new doctor and might end up getting a new one, in that case I might start TPN too for now, until I go to University of Michigan and see what they have to say (There's a whole motility clinic). Also, my insurance company won't pay for Zofran (even generic) tablets, but will pay for it IV, and Phenergan knocks me out all the time.

So those are the rest of the options really...clear liquid nutriition, try to buy tube feeding formula and drink it (although I wouldn't recommend it, pretty nasty), get a tube and if that doesn't work, then you wind up on TPN.

Hope this helped some

Sarah

By RM
Posted February 29, 2008 at 8:47 am

Hi Twinkletoes,
I too had nausea and weight loss due to GP. I found something that helps me with my nausea, it's called Nux Vomica. This is homeopathic, it's available at your health food store, or can be ordered online. It's quite inexpensive, about $7.00 or less. I take two pills 3x a day. It stopped the nauseous feeling and that alone made me feel much better.
What helped me to gain weight again, was taking Digest Gold Enzymes, they help break down the food in my stomach, and get things moving. Those are more expensive, but the best you can buy, to me it's worth the money.
I was not able to tolerate Reglan or domperidone, so I opted for natural remedies.
I had gastric erosion, and I healed that with taking DGL (also in your health food store), 2-3 tablets before each meal. The most important thing was, to get the food digested quicker, because as long as it sits in your stomach and ferments, it will eat away your stomach lining. That's where Digest Gold helps, by helping to break down your food for faster easier digestion.
I am recovering from GP, am gaining back weight, and I am pretty much eating normal food again.
Warm Regards,
Rosemarie
RMtambay@aol.com

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