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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Liquid Diet Not Going So Well


10-07-2012, 08:11 AM   #1
RobjustRob
 
Join Date: Oct 2012
Liquid Diet Not Going So Well

Well, long story short I'm 15 diagnosed with Crohns and have been taking asacol and entocort for a few weeks. When it didn't seem to be working I talked to my doctor about starting a liquid diet and he loved that I wanted to do it and I ended up starting the diet the next day. I take Ensure plus 6 times a day and the only other things I can drink are water and tea.

So, now it's day 5(time flies when you're having fun) and I've been having some problems. First off, It seems like I flare up everyday in the morning since the day before starting the liquid diet. The flare ups just consist of me constantly going in the morning and include lots of stomach cramps/pains. The flare-ups then tend to die down by evening but the damage is already done. I end up missing school(I've missed 4 days of school by now) because of these flare-ups. I haven't been having the ideal diet before starting the liquid diet(I had pizza the day before starting) but I still am beginning to get worried. Is it normal or okay to still be experiencing these kinds of flare-ups while being on the liquid diet? The whole reason I did this was to get rid of all these flare ups and one of the things that was driving me to do the liquid diet was the thought of no flare-ups or stomach discomfort during it. So, its discouraging to have pains that are just as bad if not worse than before I started the diet.
10-07-2012, 09:52 AM   #2
Spooky1
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Hi Rob,

I too am on liquid feed. I have bland food also, but not much. mine is fed through a tube via a medical pump. Must say i can't digest the ensure either. I still have the big D earch day, but have had a lot of intestine removed.

I think you need to allow a little more time though, Rob. give it a go for six weeks perhaps. and good luck!
10-07-2012, 10:28 AM   #3
Tesscorm
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Hi Rob,

My son did the liquid diet for six weeks last year (and continues to use it as a maintenance treatment, 1/2 dose with a regular diet added back). He also did it through an NG (naso-gastric) tube and ingested the formula overnight with a pump.

I can't give you a very detailed explanation but I do know that there are different types of formulas - elemental, semi-elemental and polymeric. I believe the Ensure and Boost shakes are polymeric formulas. The elemental formulas are the most easily digested but, apparently, all taste too horrible to drink, hence the NG tubes. I don't know that any one type is more successful than the other at inducing remission but, perhaps an elemental formula, allows for more bowel rest thereby allowing more healing??? Your GI should be able to provide you with more info re the different types. It's certainly not an easy treatment, and if you're making the sacrifice to follow it, if there is a more beneficial way of doing it (ie elemental) perhaps it's worth considering.

Also, mylittlepenguin and kiny have posted some good info regarding the different types of formulas - perhaps you can try searching some of their posts.

Here is a link to an article that discussed En and has some info re different types of EN.

http://www.naspghan.org/user-assets/..._Control_of.29[1].pdf

And, just re the tube, my son found it very easy to learn to insert and remove. I honestly takes him just seconds to insert at night and even less time to remove in the morning. Let me know if you have any questions about it.

Also agree with Spooky... regardless of the type of formula, you may need to give it a bit more time.

Good luck!!!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
10-07-2012, 12:11 PM   #4
RobjustRob
 
Join Date: Oct 2012
Thanks for the responses! I think I'll wait a bit a few days and then see. I'm about to cut down on the entocort(going to only take 2 doses used to take 3), and stop taking any asacol. If I continue to feel like I have been, I might try the NG tube. I've seen it done before, and it seems a little scary.
10-08-2012, 12:37 AM   #5
happy
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RobjustRob,
Welcome to the forum--sorry you needed to join.

Regarding your meds--it will be hard to tell if the EN is working while you are changing them. The usual advice is to remain on meds while starting EN, then when you are sure that the EN is working and they have tested you for signs of remission you begin decreasing meds.

Do give it a few more days on this formula--and try others before giving up altogether if you don't feel that this one is working for you.

__________________
Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
10-08-2012, 01:23 AM   #6
Guest9283
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Join Date: May 2010
I would like to echo what has already been said about switching to an elemental formula. If you get it with your tube feeding pump then it is covered by insurance. This was literally the difference between the EN working, and not working. Ensure would not work for me. Pepteman 1.5 vanilla, or pivot 1.5 are both excellent choices that I relied on and off for years. The slower you drink it, the better the absorbsion rate will be. Also the cans are small, with tons of calories (375 for peptamen) which means that you can better the absorption rate even more by adding some water and mixing. It helps by reducing the osmolarity of the drink. Just a good 90ccc's per can is good enough. In the beginning it is normal for you to have diarrhea, while your body adjusts to the new diet. A liquid diet needs min of 6 weeks to take effect, but well worthy. If applied correctly results can be comparable to prednisone (no food). At least this is the case for me. Good luck!
10-08-2012, 08:42 AM   #7
Tesscorm
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Hi Rob,

Re the tube... I agree that it seems scary, even after watching my son do it for over a year, I would still be nervous to try . But, really, I am not exaggerating when I say it took him one or two tries with the nurse and he was doing it on his own. He did it slowly the first week or so. At the beginning, he would drink water while inserting the tube (sort of 'swallowing' the tube as he drank) and I would hold the glass and straw while he inserted the tube. But, within a couple of weeks, he was comfortable enough doing it on his own and now doesn't even use the water. It literally takes him 10 seconds to insert the tube.

Here's a link to a girl giving a demo to insert the NG tube. She does a great job at explaining everything, however, she is so detailed that it seems like it's a long process... as I said above, it truly takes my son only seconds.
http://www.youtube.com/watch?v=YJIFOCbPTjo

But, if you don't mind the flavours of the shakes, there is no medical benefit to using the tube over the drinking the shakes... I'm just hoping to make you a bit less scared of the tube so that you have another option. I think the biggest pros for the tube is that you can skip the 'taste' of the shakes if you don't like them and you don't have to worry about making sure you get the necessary amount every day; however, the con is that, since you get all your nutrition overnight, there is some hunger during the day (especially into the evening). My son was allowed clear broth, pop, freezies, jello, etc. to help fight the hunger but it only helped a bit.

As for the diarrhea, my son had diarrhea for the six weeks he was on exclusive EN. There were no other symptoms nor any urgency. This doesn't happen to everyone but our dietitien did say that some people react this way as 'what's going in is liquid, so what comes out will be liquid'. This went away as soon as he added food back in to his diet.

If you have any other question, please ask!!! Good luck!!!
10-08-2012, 11:34 AM   #8
happy
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Rob,
This is a resource that one of our members recently posted about nutrition and IBD. There is a lot of info about EN (liquid diets): https://docs.google.com/viewer?a=v&q...5afV_UKg&pli=1
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