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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Did you lose your desire for other food after starting Enteral Nutrition?


08-07-2014, 09:17 PM   #1
Pilgrim
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Did you lose your desire for other food after starting Enteral Nutrition?

Our daughter is allowed a few things besides the EN, we just found out. I thought she would be really excited, and she was, but when we gave her some jell-o she took one bite and didn't want it. The same with the diluted juice. She said it smelled and tasted wonderful but after a few sips she couldn't drink it.

She has been 100% EN for almost two weeks, all by mouth for now.

Anyone have a hard time drinking water? She doesn't seem to want much in the way of fluids besides the Boost or equivalent.

I guess those are two questions. I'd take anecdotes about either.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
08-07-2014, 11:42 PM   #2
emmaaaargh
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I wasn't allowed anything - even boiled sweets or gum - with my EN, but I found that after a while I didn't really want to eat any real food because I was full from the EN. It was odd because it definitely made it easier to be around family or friends who were eating food, and I wondered whether I SHOULD be wanting any of it (especially since I hated the EN so hard in the beginning) but I didn't! It was odd.

I didn't want much water either if I recall correctly. It was okay, though, because I was drinking more E028 than I would water - and it had a good amount of water in it anyway. I think I figured that I'd just knock the eating AND the drinking out in one with the EN.

I hope your daughter does well on the EN!
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: waiting to start Humira!

08-08-2014, 07:04 AM   #3
Pilgrim
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Thanks Emma, I really appreciate your help!
08-15-2014, 01:59 PM   #4
Spooky1
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It's actually amazing how we forget what things taste like. I always have a break around xmas but my eyes are bigger than my stomach. I expect to pay a hefty price for a time afterwards. So long as she's showing a few signs of improvement then that's good. Mind it's early days so far.

Good luck with it.
08-17-2014, 12:20 PM   #5
gemling
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I've started with EEN today. Having such a tough time resisting snacks and things. I am hoping that it will get easier in the next week or so and I won't want other foods as much.
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Diagnosed May 2014
Jul 2014 Blockage caused by flare up
Sept 2014 Finished 3 Weeks of EEN. Started LOFFLEX diet
Mid-Sept 2014 Another blockage
Oct 2014 Started Infliximab


Current Medications:
Infliximab Infusions (Remicade), Loading doses
Azathioprine (100mg)
Pentasa (4g)
Supplements:
Adcal-D3 (1g)
Ferrous Fumarate (420mg)
Multivitamin
08-17-2014, 07:35 PM   #6
my little penguin
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It could be what makes her feel good .
DS was older . He was allowed gum ,small amounts of pure sugar and crushed ice.
I made cotton candy , pure sugar shapes ( cookies trees etc)
DS could care less it's just not the same as real food so that may be why.
Once we reintroduced food after 9 weeks , he had trouble chewing meat at first but otherwise was fine.
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08-17-2014, 07:41 PM   #7
Pilgrim
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gemling, I think I have read that it's much more difficult for adults to keep with the EEN program. I really admire you for trying to do it. I hope that you make it through the cravings and you feel better soon. Sometimes I look at my kid and think of how hard it would be for me to just to stop drinking coffee for 6 weeks let alone give up every taste but the EN. But if it gets you well, then it's the thing to do.
08-17-2014, 07:47 PM   #8
Pilgrim
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MLP, you are a good mom to make the special treats with sugar. Hannah can have a diet popsicle every day, she doesn't always want one so unless she brings it up we just stick with the formula, vitamin D gummies are her reward for mealtimes, and she can have a small amount of diluted apple juice which gets her iron down.
08-18-2014, 03:07 AM   #9
gemling
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gemling, I think I have read that it's much more difficult for adults to keep with the EEN program. I really admire you for trying to do it. I hope that you make it through the cravings and you feel better soon. Sometimes I look at my kid and think of how hard it would be for me to just to stop drinking coffee for 6 weeks let alone give up every taste but the EN. But if it gets you well, then it's the thing to do.
Yes, only on day 2 and it's already been pretty tough. I am allowed herbal decaff tea with no milk and no sugar added squash (cordial) in addition. I also have my hubby and a little one to look after which may make it more difficult too. But I'm determined to stick to it.
08-18-2014, 02:36 PM   #10
Spooky1
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Gemling, it does get easier! Could you make iced lollies out of squash cordial? Do you have a liquid feed that you can also turn into iced lollies or are you attached to a feed pump.

Good luck with it.
Cotton Candy MLP?
08-19-2014, 03:47 AM   #11
gemling
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Gemling, it does get easier! Could you make iced lollies out of squash cordial? Do you have a liquid feed that you can also turn into iced lollies or are you attached to a feed pump.

Good luck with it.
Cotton Candy MLP?
Ooh, that's a good idea Spooky. And yes, I could turn the liquid drinks into iced lollies as I have been given bottles to drink and not a pump. I will have to pick up a few ice lolly moulds this weekend. Thanks for the ideas! Which I could have cotton candy. I love cotton candy.
08-19-2014, 08:17 AM   #12
Spooky1
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I'm still after the knowledge of what cotton candy is exactly, lol. sounds as though I could be entitled to some.
08-19-2014, 04:46 PM   #13
gemling
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Cotton candy is what American's call Candy Floss.
08-19-2014, 05:35 PM   #14
kiny
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When I was on EEN, yes, after a few months your desire for real food goes away. You're not stimulated by the taste of real food anymore, and you stop longing for food. If you reintroduce food it comes back though. The hardest part of EEN is at the beginning, since you still long for food, but after a while it's easy, you forget how other things taste and the desire to eat it disappears.

Depends on the EN, but on modulen or 028, you can stay on that for years without problems, as long as you tolerate it. I stayed on 028 for about a year and a half. I never ate real food in that period.

I did at some time add orange juice, but I stopped doing that.

I do recommend a straw though, if you drink that stuff, I learned that after a few days, it's extremely sticky and sugary stuff, and it help protect your teeth. I have a whole canister with straws.
08-19-2014, 06:16 PM   #15
my little penguin
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Cotton candy or candy floss ( just plain sugar or dumdum lollipops ) put in a cotton candy machine - it doesn't make much - our Gi was ok since EGID kids get dum dums as well as small amounts of pure sugar.
If you freeze the formula for Popsicles be sure not to count that towards your daily intake since nutrition is no longer there once it's frozen .
Now that DS is en ( food plus formula ) we add maple syrup / honey or choc syrup to change the flavor a bit

Glad she is doing well
08-20-2014, 09:48 AM   #16
Spooky1
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I could fancy getting a candy floss maker now, lol
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