My son has Crohns and diagnosed Sept. 2011. He is on Remicade without a lot of response and may have to come off it soon. He is at risk of having his total colon removed. His Doctors want him to drink 6 ensure plus a day and no food for 2 months to help his gut heal. He is 17 years old and not happy with this plan. We are going to Cleveland Clinic next week for a second opinion. Not because of the gut diet but because of the colon removal possibility. Anyone been on ensure for this long? He has already lost 20 lbs and is very thin.
Mom of son with Crohns
- Thread starter chbolias
- Start date
Help Support Crohn's Disease Forum:
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- Dec 4, 2011
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Welcome to the forum. My son was dx last fall at age 10. We do not have experience with EN but a lot of others have with success
Here is a link under the parents of kids with ibd to get you started.
http://www.crohnsforum.com/showthread.php?t=36345
You may also want to post in the parents of kids forum
Hope things get better for your son soon
Here is a link under the parents of kids with ibd to get you started.
http://www.crohnsforum.com/showthread.php?t=36345
You may also want to post in the parents of kids forum
Hope things get better for your son soon
- Joined
- Apr 28, 2012
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- 6,166
Hi and welcome,
My little farm girl is 3 1/2 years old and STILL undiagnosed.
To answer you question about Ensure, which is a form of EN (Eternal Nutrition) is yes and longer.
My girl still does supplemental EN for breakfast and dinner. EN is a great way to make sure that she gets extra vitamins and calories. It helps mantain their weight. Most have to do it also to give their GI track time to rest and heal it's self.
Please feel free to stop by the parents forum. Their are parents with kids his age and older. They have faced the SAME tough decisions you are facing.
Farmwife
My little farm girl is 3 1/2 years old and STILL undiagnosed.
To answer you question about Ensure, which is a form of EN (Eternal Nutrition) is yes and longer.
My girl still does supplemental EN for breakfast and dinner. EN is a great way to make sure that she gets extra vitamins and calories. It helps mantain their weight. Most have to do it also to give their GI track time to rest and heal it's self.
Please feel free to stop by the parents forum. Their are parents with kids his age and older. They have faced the SAME tough decisions you are facing.
Farmwife
- Joined
- Jun 14, 2011
- Messages
- 6,449
Welcome to the forum! 
But, I am sorry to hear that your son is going through a rough time and hasn't responded to remicade.
My son, Stephen, was diagnosed in May 2011, just before turning 17. His treatment has been Enternal Nutrition (EN). If your son agrees to try EN, it can be a fantastic treatment option - success rate at inducing remission is comparable to steroids, has anti-inflammatory properties, provides all necessary nutrition will still allowing bowel rest and has NO side effects! My son responded very well to his initial treatment (6 weeks of formula only, no food except clear fluids) and has continued EN as his maintenance (1/2 dose, 5 nights/wk, plus all foods added back).
You can ingest the formula either through naso-gastric tube or orally. My son uses an NG tube - very quickly inserts tube (10 seconds at most), ingests the formula overnight. He had lost approx. 25 lbs before diagnosis and regained that plus more on EN.
I've attached a link to a thread entitled Kids on EN (includes some history on my son with more detail) - http://www.crohnsforum.com/showthread.php?t=36345
You'll also find info on EN on the Enteral Nutrition subforum, under Treatment - http://www.crohnsforum.com/forumdisplay.php?f=161
While this may be the 'exception', I have a friend whose daughter also has crohns, was quite sick last summer, in the hospital for weeks and was also facing surgery; to prepare her for surgery and help regain some weight and strength, she was put on EN for six weeks. The intent was never to avoid surgery as it seemed unavoidable... but, after the six weeks, she healed enough that she did avoid surgery, instead beginning remicade and has since been in remission.
I defintely do feel EN would be worth trying, if your son is able. But, no question, to avoid food for two months is certainly a challenging treatment.
One note, while I'm not 100% certain of this, I'm not sure that Ensure (in the U.S., the UK has a different Ensure formula) is a 'true' EN formula. It may provide the nutritional benefits but perhaps not the anti-inflammatory properties, etc. My son is on Tolerex (but it is not drinkable) and I believe Peptamin and Modulen (drinkable) are specifically formulated for EN (there are others, just aren't coming to mind now...). Perhaps ask your son's GI and/or look through the subforum here for more info. If your son is going to make the effort and sacrifice, it would be a shame that he doesn't get the full benefit of the treatment simply because of the choice of formula.
I hope your son begins to feel better and you get more options at the Cleveland Clinic.
And, as Farmwife mentioned, please drop by the Parents of Kids w/IBD forum - lots of very knowledgeable, friendly and supportive parents who understand your worries! :ghug:
But, I am sorry to hear that your son is going through a rough time and hasn't responded to remicade. My son, Stephen, was diagnosed in May 2011, just before turning 17. His treatment has been Enternal Nutrition (EN). If your son agrees to try EN, it can be a fantastic treatment option - success rate at inducing remission is comparable to steroids, has anti-inflammatory properties, provides all necessary nutrition will still allowing bowel rest and has NO side effects! My son responded very well to his initial treatment (6 weeks of formula only, no food except clear fluids) and has continued EN as his maintenance (1/2 dose, 5 nights/wk, plus all foods added back).
You can ingest the formula either through naso-gastric tube or orally. My son uses an NG tube - very quickly inserts tube (10 seconds at most), ingests the formula overnight. He had lost approx. 25 lbs before diagnosis and regained that plus more on EN.
I've attached a link to a thread entitled Kids on EN (includes some history on my son with more detail) - http://www.crohnsforum.com/showthread.php?t=36345
You'll also find info on EN on the Enteral Nutrition subforum, under Treatment - http://www.crohnsforum.com/forumdisplay.php?f=161
While this may be the 'exception', I have a friend whose daughter also has crohns, was quite sick last summer, in the hospital for weeks and was also facing surgery; to prepare her for surgery and help regain some weight and strength, she was put on EN for six weeks. The intent was never to avoid surgery as it seemed unavoidable... but, after the six weeks, she healed enough that she did avoid surgery, instead beginning remicade and has since been in remission.
I defintely do feel EN would be worth trying, if your son is able. But, no question, to avoid food for two months is certainly a challenging treatment.
One note, while I'm not 100% certain of this, I'm not sure that Ensure (in the U.S., the UK has a different Ensure formula) is a 'true' EN formula. It may provide the nutritional benefits but perhaps not the anti-inflammatory properties, etc. My son is on Tolerex (but it is not drinkable) and I believe Peptamin and Modulen (drinkable) are specifically formulated for EN (there are others, just aren't coming to mind now...). Perhaps ask your son's GI and/or look through the subforum here for more info. If your son is going to make the effort and sacrifice, it would be a shame that he doesn't get the full benefit of the treatment simply because of the choice of formula.
I hope your son begins to feel better and you get more options at the Cleveland Clinic.
And, as Farmwife mentioned, please drop by the Parents of Kids w/IBD forum - lots of very knowledgeable, friendly and supportive parents who understand your worries! :ghug:
David
Co-Founder
Hi there and welcome! You've already received some amazing advice and information and I don't have anything to add to that, but wanted to welcome you as well. Be sure to connect with the other parents in the Parent's of Kids with IBD forum, they're a wonderful bunch.
Hi chbolias, I too am a new member with a son fighting the Remicade/Crohns battle. I'm also ready for a second opinion, and am curious why you chose Cleveland Clinic? I'm trying to decide where to go and as wonderful as the Doctor Directory is on this forum, it doesn't have much in my area. You and your son will be in my prayers. Be sure and take care of yourself too :hug
mammabear
mammabear
DustyKat
Super Moderator
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Hi chbolias and :welcome:
So very sorry to hear about lad...:hug:
Tess has given you fab advice and as has already been said, you will find loads of folk here that have either been on EN themselves or have have/had their kiddoes and EN for for at least that length of time and longer.
Good luck with the appointment and let us know how you get on.
Dusty. xxx
So very sorry to hear about lad...:hug:
Tess has given you fab advice and as has already been said, you will find loads of folk here that have either been on EN themselves or have have/had their kiddoes and EN for for at least that length of time and longer.
Good luck with the appointment and let us know how you get on.
Dusty. xxx
- Joined
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The Cleveland Clinic is GREAT, you are in good hands. I live not too far from where you are going or went. My GI physician is on their Crohns Team. Is your son an athlete? Please have him check out my Facebook page below that is starting up, we are catering to athletes who have Bad Guts.
