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Old 01-07-2007, 05:05 AM #11
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Question Well, the weight gain is good for you.

But I don't understand your description: swollen? Does this mean gas?

Angry? Does this mean diarrhea?

I could not find the ingredients (inert) on the net. And I am not at work
for a few days...so can't look there either.

Some powdered products put maltodextrin in them, to aid in mixing.
I personally have a problem with maltodextrin, so I would not be surprised
if others do too.

What kind of broth? You know bacteria LOVE broth...they grow them in broth.
Some bacteria in your bowels, might be having a field day with the broth (since you had antibiotics recently).

I am glad you are gaining ..I hope most of that is muscle gain. The whey protein is good for lean muscle mass.
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Old 01-07-2007, 10:46 AM #12
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Default Hi Mrs D...

Sorry - should have been more specific..... after I had surgery in October they thought I had C-Diff again - but after a couple of weeks dia. stopped and hasnt come back....

I had seen the nutritionalist just before surgery to try to both cut my constant nausea by lowering fat intake (and since only on liquids drinking lowest fat Ensure I can - which is 6gm/can) which at same time gain weight... I'm lacotse intolerant so no ice cream - etc... so the nutritionalist wanted me to try Beneprotein in juice - I just felt more nauseus with the juice....... she also suggested Carnation Instant Breakfast with soy milk - but again, same with the nausea (although yummy)....

I then tried the flax seed in the Ensure - but my lower intestines got very swollen and sore (not gas - just feel swollen) - (nausea about the same) ... so my lastest endevor was the protein powder in just bullioin cube broth - (I cant even drink the liquid low fat chicken broth, it tastes great but then I'm up all night sick - but can usually tolerate the boullion broth with no problem - of course it has no nutritional value) - the buillion is easier to tolerate.... going down was fine (just minimal nausea at first, and gained 5 lbs in two weeks - which was awesome) - but, lower intestions starting getting very very sore, and swollen - and just to test, stopped the powder and after a couple of days I'm back to normal pain and swelling is gone....... also tried a pro-biotic for a couple of days - felt my my guts were going to explode!

I know it takes your intestines a long time to adjust to any change - but this is getting scary because a permanent "J" tube (not "G" tube) (complete with IV is my last choice cause of infection, complicaitons, etc... I already have so many other health issues).... I know the protein powder helps me gain - the kind I was drinking - Beneprotein - I'm looking at the can - dont see ingredients other then Whey Protein Isolate (then it says Milk - could this be part of the problem) and also listed as ingredient soy lecthin)... I will give them (Novartis) a call tommorow and ask about the maltodextrin...

I really appreciate your help - who ever thought trying to eat and gain would be work?????? (I dont have an eating disorder and in fact LOVED to eat before I got the autonomic symtoms) - this is driving me nuts!!!!!!!!!!!!!!

Thanks for any help

Last edited by BEGLET; 01-07-2007 at 12:27 PM.
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Old 01-08-2007, 01:20 AM #13
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Default Hi Kathy

How did you go with Novartis? It seems that certain things work for you, but after a week or so you get a bad reaction. Have you thought about rotating things around. Say on Monday have the Carnation,. Tuesday the Ensure, Wednesday the broth and so on...?

It just seems that having the same thing day after day is causing your nausea and intenstinal pain after about a week.

I know there are all sorts of things available in Australia but I don't know if it's basiaclly the same stuff. I am finding it difficult to comprehend that the nutritionist hasn't been abale to come up with something for you, and you are having to go through this.

Can you ask your doctor if you can be directed to other patients with gastroparesis so you can get some opinions & information from them?

When I go see the SF specialist over here, the waiting room is packed. She is the only one who does autonomic testing. I often wonder why can't we register somewhere where we can get in touch with each other to discuss like issues. I mean I can't be the only person who has autoimmune PN in the whole of Sydney. Yet there is no way for us to come together to communicate, even if it's only by email.

I want to offer more, but am unable to because i don't know alot about nutrition. Have you thought of talking to another nutritionist for more information?
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Old 01-08-2007, 09:24 AM #14
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Arrow Kmeb,

I am getting an impression that you still have lower bowel problems.

Cramping there, causes nausea. I have a complex severe GI congenital defect.
Let me share this with you. The feelings preceding an obstruction are silent, until ischemia starts to develop and then pain starts. There is really little
feeling in the intestines, otherwise. But you can feel cramping and distention from gas.

Feelings of "going to explode" suggest to me, GAS. And since you do not
consume fiber, which would help absorb gas produced by bacteria in the bowel,
your colon is not functioning properly.

The majority of whey products are lactose free. This is because the manufacturing process does not pick up the lactose portion.
example: http://www.qfac.com/whey_protein.html
Lactase enzyme is available in drops to add to any food/drink dairy based. And there is a Lactaid milk, which is very good (I use it).

I am starting to think that you may need l-glutamine supplementation. This amino acid is necessary for the normal maintenance of the lining of the GI tract. Please read this:
http://findarticles.com/p/articles/m...20/ai_20801957
The author is James LaValle...who co-wrote Drug Induced Nutrient Depletions textbook.
and this: http://en.wikipedia.org/wiki/Glutamine

I think you have multiple problems, and this makes your task much harder to
accomplish. Gastroparesis nerve damage, and nasty bacteria in the bowel!

Some whey protein products have extra l-glutamine added.
this is an example:
http://www.nowfoods.com/?action=itemdetail&item_id=3105

I am also worried that you are not getting enough potassium. This is a critical electrolyte.

Commercial bouillon contains hydrogenated fats, high sodium, and monosodium glutamate..which is an inorganic form of glutamate hard to tolerate.

And you need to consider that anything going into a J-tube will end up in the problematic colon anyway.

Have you tried simethicone? This helps one pass gas. It is available in a liquid form-- drops (intended for babies) but it can be used by adults. It may help with the gas/distention discomfort.

I don't know what else to suggest.
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Old 01-08-2007, 09:53 AM #15
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Default Aussie and Mrs.D.

I'm printing out your messages right now - thanks for the suggestions... As soon as the busines day starts out there I'm going to call Novartis and see about the powder - but I think your completely right about the small bowel problems Mrs D.... I have VERY good docs except for GI doc - and cannot find a motility speicialist...... the doc who diagnosed me with Gasptroparesis has moved out of state but even five years ago motility tests show very slow gastric empty times... and other docs have said after only listening to my intestines thats its obvious my problems are from lack to motility due to the neuropathy........ (the new GI doc I was just referred to wants me to start all over again with Gastric Empty Study, then barium swallow etc etc.. not the small bowel and other colon tests that should be done but I dont think he's familiiar with.... (but I have to work with him - he's best "buddies" with my GP - who is great) - so must tread very carefully because its taken years to find my neuro and GP - who welcome a complicated patient... (and they work together at their hopspital and are heads of their departments)

Will check out all the links and look into the suppllements mentioned... Also, I used to drink lactaid milk with my cereal before I got sick - maybe I could tolerate it - worth a try!

(and Mrs. D. - on the J tube - I agree - I do belong to a gastroparesis support group on line - and I know without testing first to see if my intestintes can tolerate the feedings that the tube will be just as bad -- BUT - again, the doctors get so bent if I suggest this to them....)

Aussie, also, what is SF?????

So, this group is truly a better help then them in this case..... I'm going to follow up on all of this and truly appreciate the hellp and suggestions......

(my goal is just one nausea free day - then we go from there!!!!!!!!!)

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Old 01-08-2007, 03:31 PM #16
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SF=small fibre
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Old 09-09-2008, 11:14 PM #17
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Default what about strained baby food diluted in chicken broth

Quote:
Originally Posted by kmeb View Post
Mrs D. -
sorry - its beneprotein - not benefiber! (and is made by Resouce)

Unforutnately - with gastropareiss there is damage done to vegas nerve - so stomach and intestines dont contract as necessary to push thru food - and there are ony a few medications on the market that will help with this (reglan - domperidone - propulsid) - all have bad side affects/and or are contraindicated for those with heart issues (I also have heart rythm problems and advancing cardiomyopathy - I'm hoping from the autonomic issues too - although the docs are again telling me to get tested for cardiac amyloid based on tests done a couple week ago that show priogression of cardiomypathy from a year ago)....

Fat is very diffiuclt to digest - as is fiber - thus gastroparesis goes against the norm we are taught (fresh fruits, veggies, etc. those are totally off limits) some peoplw with the disease can tolerate fish or no skin chicken - but depends on severity.... we know I need a little fat - but again - as little as possible.... (digestive enzymes dont help)

Unfortunatey - a G tube wont work because my stomch doesnt push food thru - so best case senario is J tube - and last step TPN (straight into veins) which carries even more deadly side affects - again - this is probaby for life as I've declined over 6 years - not improved.... (the Ensure actually has kept me alive again with normal blood work for 6 years - but the nausea is becoming so debiliting its hard to think straight)

I will try maybe even smaller amounts of the "powder" with different liquids as you suggested - maybe the old guts just need time to adjust? (also, appreciagte info on liquid flax oil - can you recommend where I could get on-line to try some and a good brand - I know this is your area!)

Neuropathy has much farther reaching consequences if it starts to affects other nerves I'm finding - and its scary!

FROM KASOBIE, in a medical field. This is a long time after your comments, but what about strained baby foods which could be further liquified with chicken or beef broth as tolerated? That way you have a wide range of choices.
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Old 09-11-2008, 12:17 AM #18
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Default Gaining Weight

Thanks for strained baby food suggestion - I'm actually seeing my GI doc tomorrow after a recent weight loss of 9 more lbs (very bad thing) - I moved to a more hadicapped accessible place in the past month - but it took a real physcial toll - and my doc is going to be very upset about the loss as I am too - but I couldnt help it - the physical stress was so hard on me I just lost and lost (I'm starving all the time but the gut just cant handle it) - now I'm about settled and am going to work on gaining however I can.... also been computerless (yes, again for those of you who know my luck with puters) so timing of your e is perfect - just got back on line.....

Heres to gaining weight!
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