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Crohn's Disease
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Posted 1/11/2010 7:37 PM (GMT 0)
My 20 year old son with Crohns diagnosed 3 and 1/2 years ago is now beginning an enteral diet. He wants to know if there is anything besides the liquid protein drinks that he might be allowed to consume such as diet sodas any juices, etc. Anyone familiar enough with this diet, which he plans on being on for a month or two to rest his gut to give comments or suggestions. Thank you in advance.
Posted 1/11/2010 7:51 PM (GMT 0)
Writer? She is an expert!!!

My son did it on two different occasions with great success! He found that he did better on what Writer told me was a semi-elemental formula, designed specifically for Crohn's. The Ensure/Boost-type products he said did not "feel good" in his stomach. Your son may want to experiment with different formulas. I would steer clear of all diet products, because of their effects on the gut. Also, any drink high in sugar.

Writer, are clear juices and broths okay?

Best wishes to your son, bowlies!
Posted 1/11/2010 8:20 PM (GMT 0)
My 10 year old son has used formulas as treatment both thru feeding tube and orally.  It does help reduce inflammation during flare ups and puts some weight on because the nutrients are more easily digested than regular diet.  I would stay away from anything else because the whole point is to give the GI tract a necessary vacation from overworking to digest regular foods.  It is best to just give the system a rest and time to heal.  We are going to do another treatment of formula to try to avoid Remicade because he has no typical symptoms, only clinical results (lab work, MRIs, barium xrays, etc) indicating inflamation that wont go away with current meds.  Just got insurance to OK remicade if need it.  Hoping they with cover formula feeds as treatment in lieu of cost of remicade.  Even a 90% food intake of formula can be expensive.
Posted 1/11/2010 9:26 PM (GMT 0)
I think it depends on why you're on the diet. If you're going elemental because of being underweight, then a bit of occasional juice etc *might* be ok. If you're doing it to rest the gut, then my understanding is that it's best to stick to enteral feed alone.

You also need to remember that the feeds have been formulated for exclusive feeding, so if you go adding juices etc, you might disrupt his nutrition and even overload him on some vitamins, which can be harmful.

That is my opinion, but I think it would be best if you waited for Writer to come, as she really is our resident expert :-).

Ivy.

ps. While you're waiting, you might like to look at the "nutrition" link in my sig.
Posted 1/11/2010 10:41 PM (GMT 0)
I dont know if enteral is the same as modulen which is also a liquid diet for Crohns but with that I was allowed squashes, fruit juices with no bits .
I didnt seem to have a problem with most juices but i layed off orange juice as it might have been abit too acidic and apple juice might be too much for the gut too.
Posted 1/12/2010 3:32 AM (GMT 0)
The ideal is nothing but the formula. But doctors often allow sugarless gum, lollipops, and hard sucking candies, and occasionally tea or coffee (no milk). That said, some people seem to be lucky and respond really well to enteral nutrition and manage to add a little bit of other liquids without problems, but others need to be very strict about it to reach remission. Just luck of the draw, I guess.

PS: Michelle, regarding Modulen, yes, it's one brand of enteral nutrition.

PPS: How nice to be called a resident expert! :)
Posted 1/12/2010 4:38 AM (GMT 0)
Thanks everybody. My son who is a freshman in college has not been in remission for the 31/2 years he has had Crohns. He started out treatment on steroids and moved to Remicade and Imuran within 8 months. That worked well for about a year at which time he required a larger dose and treatments closer together to get by. When the Remicade was no longer working he was switched to Humira and Methotrexate. It too worked for a while and has also stopped being effective. The docs are trying to get Cimzia approved for him and I have been pushing the enteral nutrition as an attempt to get him into remission at least to give these other drugs the best chance. The docs are supportive of this as well. He being a 20 year old was not excited about this proposition but after reading about people's successes and understanding that his options are limited he has agreed to do this for 6 weeks. I am just looking for more ways to support him through this from a distance. He is returning to school next week and anything I can do to be supportive and tips you might have to help him get through this would be welcomed. Thanks for your help.
Posted 1/13/2010 12:03 AM (GMT 0)
One good thing is that if enteral nutrition is going to work, it usually takes effect very quickly. He could be feeling quite a bit better within as little as a week of getting started, and the improvement usually makes it much easier to stick with treatment. Also, you do get used to it, drinking your meal just starts to feel normal. It can be a timesaver, too—no time spent hunting for a place to eat or fixing meals, so more time for fun stuff which, if you are lucky, you will be feeling much better to enjoy.
Posted 1/13/2010 12:14 AM (GMT 0)
Is this something that the doctor has to prescribe for you or is it something that you can do on your own?
Posted 1/13/2010 12:18 AM (GMT 0)
It depends where you are in the world. In the US, most enteral nutrition products are medical foods, meaning that they are designed for use under medical supervision but can be obtained without a prescription. However, you can often get insurance coverage if your doctor will write a prescription indicating that this is a medically necessary treatment for you.
Posted 6/14/2011 2:47 PM (GMT 0)
Hello everyone! I'm starting my daughter (6 y/o, Ulcerative Colitis) on an enteral diet today. I wanted to use absorb plus by Jini Patel (has anyone used this before), but waited too long and now it's either the Elecare provided by her doctor or remicade. I'm still going to order Absorb Plus, but was wondering if anyone had any experience with Elecare.
thanks!
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