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shel4444

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Reply with quote  #1 

When you're in a cycle (currently in coalescence - 5 months and counting) what do you eat or try to eat? I have taken the path of least resistance with liquids -- mostly drinks and broth-based soup. I'm so tired of this routine! But if I attempt anything else it makes the throwing up worse, which brings on worse pain and a migraine. I can't drink Ensure, have pudding or ice cream. Anything milky makes my stomach really burn. Suggestions?

 

Shell


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ginny

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Reply with quote  #2 

Although I have no answer, I think this is a great question.  I would suggest emailing one of the CVSA Principal Medical Advisors for suggestions.  I do not remember this being discussed before on the message board but it is a topic that needs addressing. 

 

 


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ginny CVSA Moderator
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JASerino

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Reply with quote  #3 

Good question.  When I was in coalescence I was tube-fed.  Anything I put in my mouth made me vomit.  ~Joely


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klconner

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Reply with quote  #4 

TRY is the operative word.  I would do the liquids, which got real old real fast.  Lots of frozen gatoraide.  If I attempted anything solid it was the good ole brat diet (bananas, rice, applesauce and toast.)  Basically, I started eating not by taste but by what I knew would come up easy.  I have used PPN for lipid and vitamin and fluid replacement.  That really is a good question.

kate


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ginny

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Reply with quote  #5 

I asked Dr. Fleisher the question about what to eat during coalescence.  He kindly answered:

 

 As for what to eat during coalescence, that can be a very difficult problem. The typical patient whose episodes have become fully or nearly fully coalescent  have their nausea stirred-up by eating or drinking almost anything.     I've seen some serious weight losses (50 - 80 lbs over a year's time) in patients who suffer persistent coalescence of episodes. Liquids are usually better tolerated than solids. Low fat or non-fat foods or drinks are usually better tolerated than fatty or greasy, "heavy" foods or drinks. Tart or very spicy foods may also give trouble.
     Doctors have been slow to recognize the existence or importance of coalescent patterns of symptoms; many tend to think of CVS as invariably intermittent, with symptom-free intervals between episodes. Clinical experience has taught  me that (other than kidney failure and death from neglected dehydration) the worst complication of CVS is coalescence. That's what causes CVS patients to loose their jobs, their homes, their educational goals and even the integrity of their families sometimes. 
 


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ginny CVSA Moderator
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mahler1987

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Reply with quote  #6 

I was  going to reply similarily.  I listen to what my body is telling me.  If my gut is extremely I stick to fluids.. then progess up to tea bullion and very light soups.  Once I get thru that is things like apple sauce, pasta.  If my body is craving it and its reasonable I try it. Fatty greasy food will set me back.  When I get to actually having a day or so to start recovering, I will crave pasta and tacos.

 

Pattie


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trice

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Reply with quote  #7 

My doctor suggested that I eat some type of bread and lean protein such as toast with peanut butter, turkey wrap, etc. She said that the bread soaks up the acid in my stomach (and I always crave bread anyways) and my body needs the protein. I'm only able to try this though if I'm not vomiting.

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typatricksmom

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Reply with quote  #8 
What is your doctor saying? This is just awful... Have you lost a lot of weight? I know that when Ty is like this, when he is well, even if it is just for a few hours he will want to eat, and eat, and eat, as if he had not eaten in a month. One night he ate 4 or 5 packages of Ramen noodles, and he is 8. Ramen noodles are always a staple of his during his cycles, especially when he is coalsecing, but his longest has only been 3 weeks, nothing to what you are enduring. We did have a GI tell us once that Ramen was good, something to do with the carbs. Also, in previous posts there has been talk of the corn starch drinks. Does anyone use that? This has to do with cornstarch provides ongoing carb support. According to many of the medical advisors, they tend to support high carb, rather than high protein during these times. You must be exhausted....

Ginny, that was wonderful of you to ask a medical advisor for a response.

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Linda
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VyeVacious

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Reply with quote  #9 
I tend to stick to fluids too... Staminade or a mineral supplement drink to keep my electrolytes up.
Watered down apple juice or weak cordial seems to be working a little for me, I've been vomiting everything for the last 6 days. Today is day seven... Started very early this morning before 6am and Im vomiting every hour or so.
I have been having cravings, so if they dint tend to go away I give in, because nothing I have tried has stayed down for long this week... but I do drink plenty of fluids with whatever I eat as this makes it easier on the way back up... Small portions are a good idea, and I try to eat slowly... hard when your really really hungry! LOL

Fruit water ice blocks aren't bad either, I tend to crave sweet stuff when I'm really ill... water on its own seems to be something that is hard to stomach... whatever I drink I make sure its with ice, the colder the better.
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Doc

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Reply with quote  #10 

It depends on how long my episode lasts.

The 5 day episodes, I have to have broth first, then maybe noodle soup, then maybe noodles, then maybe strawberries, yougurt, pudding, bananas. Once I get past the gradual thing I will all the sudden be starving to death and craving things like pizza, burritos, etc... I usually eat them if I want, in large quantities most of the time, and usually do fine.

If they can stop my episode at the ER within a few hours of vomiting I can usually go straight to ramen noodles after about 12-24 hours. Then I quickly progress to cravings of pizza and burritos.

I let my "gut" instict tell me on everything. If I am craving it and it feels like it will go down, I go for it. If I still even think that I might vomit again, I won't put anything but gatorade/water in my mouth.

Regardless, I must have mass quantities of Gatorade Rain Lime at all times through the episode and after. (Pretty much every day). We spend a ton of money on Gatorade when I am sick. I drink almost constantly so that I can throw up liquid rather than nothing. If I couldn't do that I think I really would die.

Doc


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marli

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Reply with quote  #11 
Ramen noodles are one of the first semi-solids that we try.  I do take some of the seasonings out.  When I open the paper lid, I shake out the powder and dehydrated corn, or whatever and then add the water and just do the noodles with the liquid.  It has just enough seasoning to have taste but it's mild enough.
We also do home made slushy.  Anything that you like, freeze  until right before it solidifies and mush it around.  It feels like you're eating something but it's essentially just liquid.....


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marli
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IRISHRD

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Reply with quote  #12 

I suck on pedilite pops though they seem to be really salty.  Then at the demand of my hubby he makes me eat baby food.  Other than the texture (I can understand why babies spit their food out) it seems to stay down.  I for some reason crave milk just before and during an episode.  I know it is not good for me at the time (curdling) but the cravings are unbelievable.


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Gretchen L. Carlson
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trice

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Reply with quote  #13 

I totally understand where you understand where you are coming from. I've tried the baby food thing too- the meat and vegetables blends are the only ones I can stand the texture of. The cravings can get so bad that I just have to eat that certain thing even if I know it's going to make me sick later.

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IRISHRD

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Reply with quote  #14 
When coming out of an episode I usually have to stick to ensure and small pieces of ice.  I also keep Gatorade and pedialite pops on hand.  (Though the pedialite pops seem really salty to me.)  My husband has gone to the point of buying baby food.  Some of it is ok but the texture is really bad. 

When I feel it coming on I usually just stop eating.  Which usually worries everyone around me, which in turn worries me and the vomit begins.

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Gretchen L. Carlson
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IRISHRD

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Reply with quote  #15 

oops posted that twice.


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Gretchen L. Carlson
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