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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Can't stand the taste of Vivonex - help!


02-06-2013, 01:28 AM   #1
Bec
 
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Can't stand the taste of Vivonex - help!

Have just been given my first taste of the Vivonex mix and it is foul. I have been told that i will be on the elemental diet for 4-6 weeks to put on weight and heal my crohns and im more than happy to do what it takes. However i have just tried it literally 15 minutes ago and i nearly cried at the taste. Please help me out with any other recommendations etc.
02-06-2013, 02:14 AM   #2
tiloah
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Did you use a flavor packet? Are you able to try a different flavor packet? I don't believe you are allowed to use anything else to make it taste better...

I would suggest contacting your prescriber and seeing if they have any suggestions. Sorry I couldn't be more helpful. But hang in there. It will be tough but worth it. *hugs*
05-01-2013, 06:25 AM   #3
lizbeth
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Hello there,

I agree with the previous post that you should contact the person who prescribed and discuss alternatives. I don't think you will be able to continue the elemental diet if the taste is so bad to you. I imagine there must be suitable alternatives. Hope you get something sorted, good luck.
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05-01-2013, 10:16 AM   #4
barelyalive
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I just finished two weeks of Vivonex Plus. I found that if you just drink it down you get used to it, although still quite gross. I probably did not ingest enough, in order to stretch my supply over two weeks, therefore I lost 12 pounds over the 14 days. At times I felt quite ill. I ended up drinking some coffee each day and ate some 85% organic dark chocolate just so I could function at work. I do not know it this counteracted any success I may have had.

I have learned of another product by Abbott Labs - Vital HN, that people have described as better tasting and healthier as evidently Vivonex has some harmful ingredients...I am thinking of giving it a shot.

I read about Crohn's patients having success with VegaOne - I bought it and tried it yesterday - but ending up with signifficant bloating and hard to pass diarrhea....I have Crohn's in my Colon, I suppose the VegaOne would be more appropriate for those with Crohn's higher up in the GI tract. It does contain a lot of fiber.

Cant win as while on Vivonex and minimizing my poops to 0-2 a day, thought I would try to quit smoking - after 1.5 days I started bleeding again and started to smoke again.

I am now on my 3rd day of ingesting Wheat Grass Juice (HA, you think Vivnex tastes bad)...any thoughts on this????

Now that the vivonex is over I am implementing a blend of the SCD and FODMAP diets (eliminating everything that each eliminates).

In spite of the two week vivonex diet, I am still in pain and miserable. I am still taking lialda and canasa, but my affair with predisone is over for now as I found the side effects intolerable. My GI Doc is very steroid intensive and does not believe in alternative approaches so I am trying to find a path toward remission on my own.

I have been beyond miserable for over a year now and have even thought of ending it all. Being in constant pain and running to the bathroom 15+ times per day is no way to live.
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05-01-2013, 10:45 AM   #5
happy
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Hello Bec,
Welcome to the forum.
I used unflavoured VivonexPlus for four months and then again for two months. I found that I just gradually got used to the taste as it was necessary for me to drink it as I was so ill at the time. I drank mine chilled. I made the full day's batch the night before so it dissolved well, chilled it and then poured out small amounts throughout the day until it was done. It seemed to me that the smell was worse than the taste so mixing it the night before helped.Some people drink from a covered cup to decrease the smell as well. I was extremely ill at the time and the next step was TPN in hospital, so I was highly motivated to drink it. Good luck.
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05-06-2013, 07:52 AM   #6
barelyalive
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Happy...I recently did two weeks of Vivonex Plus, but cheated too much. I am about to start another round of elemental with Vital HN (as I read it tastes better).

May I ask if there were any supplements you took during your fast...ie vitamins, herbs etc. I was also wondering if in your opinion I could supplement with Wheatgrass Juice and VegaOne and or Glucerna Drinks and also mix in some L-glutamine powder without undermining my goals (remission of IBS and Crohn's in the large intestine).

Thanks for any advice you may lend.
05-06-2013, 11:02 AM   #7
happy
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Hello barelyalive,
These three resources have good info about EN: http://www.amazon.com/Crohns-Getting...beat+crohn%27s

Post #5 on the Enteral Nutrition Books & Useful Links page of the EN sub-forum in the Treatment forum.

http://crohns.org.uk/crohns_disease/...hould-i-choose

As to your specific questions about supplements that you wish to use during your trial of EN-I am sorry, but I have not tried any of them. I did supplement with additional liquid vitamins when I was on exclusive EN. I consulted with a dietician who looked at the breakdown of my formula to calculate what I was lacking. They were vitamins that could be added to TPN, so we were sure that they were only pure liquid vitamins with no other added substances.

The added foods/drinks from your last attempt are things that I could not tolerate until quite late in the process of my return to eating, so yes I think that you may have counteracted any possible success.

I would consult with a dietician to make sure that you are ingesting enough calories, so that you feel more energetic through the day.

If you really want to get to remission, I would suggest that other than the liquid vitamins, you use exclusively formula. It often takes more than two weeks, however. As well, you should know that the research is less positive for remission with EN when the disease is in the colon rather than the small intestine.

I know that it can seem like a daunting treatment at the beginning. However, if you do choose to try it, since it is so difficult, why not make sure you have the best chance of succeeding by using a good formula exclusively? Then you will know that you hace given it your best effort.

Good luck. May you have success with your chosen treatment path.
05-07-2013, 08:59 PM   #8
barelyalive
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Yes, realistically I will not achieve Crohn's remission, however I hope to improve my IBS symptoms and give my colon a rest. I am planning a probiotic assault and FODMAP diet after the two weeks to specifically address my colon problems. I am also planning to quit smoking and I am hoping quiting smoking while on an enteral diet will be not be as traumatic on my colon.

Thanks
05-07-2013, 10:23 PM   #9
happy
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Hi barelyalive,
Since you are going to all the trouble of EN, I suggest that you try to find a Non-dairy source for your probiotic, since dairy is often an intolerance for those with IBD and IBS.
Good luck.
05-17-2013, 09:55 AM   #10
Spooky1
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Hi Bec and Barely,

I'm on Vital Vanilla, I have it through a tube. have tasted it mind and yuk! but I used to put some liquid feeds into lolly making cups and pop them in the freezer. I think these were E028 Extra. You might want to try this. Coffee is a complete no no for me! Chocolate is also dairy. You prob want to try and avoid caffeine, says me ha ha, and also the norty stuff, chocolate, yum. if you feel you need to eat something probably non fruit sweets are ok, perhaps like clear mints, or perhaps just a tiny bit of boiled potato and salmon. However, I would follow the advice of your GI to try and help better the symptoms.

if all else fails with the taste, ask GI if an NG tube is poss.
Good luck both.
05-17-2013, 10:49 AM   #11
barelyalive
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I actually think the Vital HN Vanilla is delicious - compared to Vivonex and absolutely tolerable. What I find, however, it does not fill me up as well as the Vivonex (or perhaps the Vivonex grossed me out to the degree I had no appetite).

Oddly I have had bleeding the last two days and passed a huge blood clot this morning - this never happened under Vivonex and I am still smoking - what gives???

My goal to 1) get IBS into remission and then 2) Colonic Crohn's into remission. I do not believe treating the Crohn's before the IBS will yield any benefits long turn. I am sooo sick of being in pain and captive to the bathroom I will try anything.

I have read so much and there is so much info that conflicts.
05-17-2013, 11:01 AM   #12
happy
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barelyalive,
Hi sorry to hear things are not going well for you. I just thought that you might wish to know that VitalHN contains dairy. Many people with IBD are sensitive to dairy. I was not able to get into remission until I went on VivonexPlus, a non-dairy, gluten-free formula. It also took several months of consuming the formula for me to achieve remission.

Some people try the prednisone with the formula for a short while and then wean off the prednisone while still on exclusive formula;perhaps this would get things started faster for you? I hear you on the side effects though. They are not fun.

Hope things turn around soon.
05-18-2013, 04:09 AM   #13
Spooky1
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Hang on, dairy??? I just changed to this in the past 3 months, can't say its working either. Neither did perative, which I agree, barely, is thicker than vital. omg, must have words with dietician because the sweetner in Vital is causing me acne! Funny, she knows I can't really do dairy.
05-18-2013, 10:45 AM   #14
happy
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Hi Spooky1,
Sorry to be the one to tell you, but yes the "whey" ingredient is made from dairy: http://abbottnutrition.com/brands/products/vital-hn

Many of the liquid nutritional drinks and formulas contain dairy for the protein content. I recommend calling the manufacturer yourself whenever starting a new formula/drink to be sure that it does not contain anything that you may be sensitive to.

Last edited by happy; 05-19-2013 at 04:50 PM. Reason: autocorrect gremlins
05-18-2013, 06:34 PM   #15
hawkeye
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I was on Vital HN back when I was first diagnosed (1991) and I mixed Strawberry Quick syrup with it - my GI did not have an issue with this
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05-19-2013, 06:35 AM   #16
barelyalive
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I was on Vital HN back when I was first diagnosed (1991) and I mixed Strawberry Quick syrup with it - my GI did not have an issue with this
I believe this is a very individual specific scenario, I for one am lactose intollerant, an dairy has proven to throw me into a flare. Additionally I need a protocol with no sugar or carbs in order to attempt to cure SIBO and IBS.

I am at my wits end as I suffer froim Barretts Esophogas, Hiatal Hernia, IBS and Crohn's/Ulcerative Colitis. It seems like a solution for one negatively impacts another. I am also a CPAP user and have been told the CPAP exacerbates IBS....cant stop CPAP - do not want to go back to the days of irritability and raging temper.

Life $ux, and then you die.
05-19-2013, 01:19 PM   #17
Spooky1
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I think it was David, one of the administrators, who mentioned that SIBO happens more frequently in those on liquid diets. I too could do without any carbs at all, but can't tolerate fats, veg or anything other than salmon and potatoes with nothing added. this along with water isn't too bad. Mind, it doesn't impress the docs, GI's and dieticians.

Life does suck, believe me, i'm 50 and have suffered since childhood. but for any younger person I do want you to know that they diagnose it earlier these days and they have more option of getting in there faster with meds that are very different to when I was young. So please don't be upset and make assumptions that you are going to be just like myself and Barely, and believe me, we too need your support because at least you know what were going through. Sometimes our closest friends and family have no idea quite how it is. This forum provides a lifeline for many of us.

Best wishes to all stuck on liquid diets that don't always work for us, and lets hope for some cure soon.
02-06-2014, 11:27 AM   #18
tommoylan
 
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Can anyone give me a source for flavor packets for either Peptamin or Vivonex. My SO with CD ends up mixing it with fruit juice to make the taste tolerable, yet is in enough of a flare that that seems unwise. Yet, I have scoured the internet and found no packets available. Would a drop or two of vanilla extract or some other flavoring accomplish this?
02-06-2014, 12:20 PM   #19
happy
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Hi tommoylan,
Try asking in the Parents of Children with IBD section under Enteral Nutrition http://www.crohnsforum.com/showthrea...576#post694576
I personally had my formula plain. You could phone or email the manufacturer for some suggestions: http://www.nestlehealthscience.us/info/contact-us
Good luck.
02-06-2014, 04:19 PM   #20
Spooky1
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I like the sound of adding a few vanilla drops, wish I had that idea with bland module when I first had to drink it.
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