My Enteral Nutriton (Ensure fast) experience

Very best of luck and hope this puts you in remission

Gumby, I can't do steroids because I have osteopenia. My mother has crohn's and has been on steroids for many years and her spine is crushing, poor lady. I also failed azathioprine, so it's the liquid diet, methotrexate or the big guns. I chose the EEN because it's pretty clear that there is a cancer syndrome in the family, and I don't want to suppress my immune system unless I have to. I'm doing the Ensure diet because there is a chance it will put my crohn's into remission. This is my idea, not my doctors, but I have an appointment with him in a few weeks to get his opinion if this is working or safe to continue for the long term.

Dave, thanks so much for the encouragement, I appreciate and need it.

BRelaxed, yes the ingredients are questionable, yet I seem to tolerate Ensure even though my diet is normally quite restricted because I have problems with many foods. The milk and soy protein could be a problem for some, plus the sugar and carrageenan are something that would usually be best avoided. Somehow the theory is that the ingredients promote the growth of healthy bacteria, at the expense of the bad ones, plus the low residue formula gives the guts a rest. There is a product called Absorb Plus that is supposed to have better ingredients, but I can't afford that one. Another one is called Orgain, and has much better stuff in it, but too costly for me as well. Boost has corn syrup and that won't work for me, but may for others. Ensure Plus, despite it's sugar and the like has put crohn's patients into remission when taken with just water in clinical trials. Worth a try.

When you see your GI, ask how much of your intestine is inflamed and strictured.(unless you already know) My whole diseased area was only 17 cm, so even though I didn't really have a choice, surgery was a good option for me. My second opinion was with Dr. Rubin at University of Chicago. He is having me on no meds until disease re-occurs, which may not be for 5-10 years if I'm lucky. If the Ensure doesn't work, or doesn't work once you go back to food, it's something for you to consider, I think. I failed azathioprine too, and Pentasa did nothing to slow the Crohn's. With your history of cancer it is something to consider. If you can buy 10 yrs of being med free (no guarantees there for sure) then it may be worth it. The important thing if you go that route is extremely close monitoring so you know for sure that the Crohn's is not back. At the very least, I'm hoping to buy some remission time while they come up with new and better treatments. My mom died of lung cancer, but she was a smoker. I don't have a strong cancer history otherwise. I would go on biologics if I needed them, but it does make sense to me to wait while I'm disease free. Just some thoughts for you to consider. I am so glad the Ensure seems to be working for now!

Thanks. I think a small bowel follow through test would tell you how much stricturing you have. MRI would probably work as well.

Hi big betty, best of luck, hope all the inflammation subsides.

I have regular CT's for the small bowel, and the doctor mentions each time that I have a long stricture. They mention it in the report, but more than once I asked the GI doctor how long is it, he says the report doesn't say, just says it's long, so if the SBFT gives a person that information, may be better than a CT? However, if they find another small bowel problem on the SBFT, then they may still send you for a CT scan, especially if it's something that requires surgery.

First post! I've been here for awhile reading and learning from everyone. I'm really interested in finding out if the Ensure diet puts you in remission big betty! I hope it works for you. I'm in a similar predicament only I have had Crohn's for 15 years and it has mainly affected my colon. I've had a few flares in the rectal area and small intestines, but almost always it's in the colon. This go round it's in the 1st 35cm and my symptoms have been so different. I have psuedopolyps, inflammation, ulceration and cobbling. I had to discontinue Humira due to neurological side effects, mainly drug induced Lupus. The dr. doesn't want to try any other biologics at the moment. Pred is only slightly helping this time. Delzicol doesn't seem to be doing anything. The Rowasa, Canasa and 6MP helped for a couple of weeks, but now things have taken a turn for the worse. Since my Crohn's is designated at the moment to the last part of my colon, would a Ensure diet even be something that would help that far down? I will be following this thread and wish you the best with your experiment!!

Thanks big betty! The next med on the list to try is Entyvio. The dr says it's a different biologic than Humira / Remicade. Honestly, I'm really wanting to avoid the biologics if possible. I've thought about doing EN for awhile. I usually feel better the less I eat. Obivously with the massive ulcers at the end of my colon, less bulk in my diet would probably help out and maybe allow my colon to heal quicker. Even if it won't work for me, it could give me hope for a little while and that's always a good thing. Good luck and I hope you have continued sucess!!

Hi Big Betty,

I'm subscribing to your post because I'm doing enteral nutrition myself, and you're inspiration to me. Are you hungry at all on this? I'm incredibly hungry and don't have a lot of energy, and I'm not sure if I just need to adjust to it or not. I've been on it for a week and a half.

How long do you plan on doing it? Also, I hope this isn't a TMI question, but are you stools green? Mine are not, but I've read that if they turn greenish, that means the enteral nutrition is working. I did TPN not too long ago, and my stools were greenish, but on this they are not, so I'm wondering if I'm doing something wrong. Anyways, please keep us posted. I hope this helps you and gets you to remission.

I have a mixed diet as need 4000 calories a day to just maintain my weight as have had some much bowel removed and the small amount of small intestine that is left is not very good quality. I have 2 ensure plus drinks for breakfast, currently having the yogurt drink style ones, and then have a fortisip compact (much smaller size but same calories as ensure) mid morning and mid afternoon. Rest of day eat normal food and also use maxijul powder in all drinks as it's an easy way of adding calories without bulk, or as my husband calls it my 'fat powder'.

The main problem I always found when I was put solely on ensure for months at a time, years ago before my first surgery, is the actual act of chewing things. Seems so odd to drink and not chew. You could also look at the range of desserts that are available as well it you want to have some variety, they're not bad, similar to blancmange texture. Just wish they did something savoury for those of us who don't have a sweet tooth.

Think def need a sense of humour, seeing as I'm 6'3 and weigh at present 11st you can understand why he calls it my 'fat powder' as the hope is I'll put some weight on. I went down to 9 1/2 st last autumn before they took me in to remove the stricture and had to have TPN for 6 wks until I was well enough to cope with the 6 hours of surgery.

I've recovered from the surgery but new complication is they've discovered I have parathyroid disease, oddly enough normal thyroid is fine. They think because of the lack of obsorbtion in my bowel it made the parathyroid go into overdrive and it is now stuck there. Only cure is surgery but NHS has cost guidelines so am waiting to see surgeon. Main problem is one symptom is loss of appetite so have already lost 7 kilos since leaving hospital so now GI team are saying will have to go on TPN if it isn't solved.

Apart from that and abscess where the central line was removed (think idiot who took it out has left part of it in by mistake) I'm okay and going back to work tomorrow.

Good luck with the ensure diet.

Hi big betty,

Thanks for the response and encouragement! Great for you that you're almost up to 4 weeks. You have a great attitude about it. After today I'll have finished 2 weeks. My gut feels better but unfortunately my IBD-related arthritis is now coming back, so I don't know if this means this won't be working for me. I have Crohn's colitis though, and I know that it's not as effective for Crohn's colitis as it is for other disease locations. However it has helped some people with Crohn's colitis, so I figure it's worth a shot. I'm on meds now too, but I was hoping to avoid getting on prednisone again since I was on it so much last year.

Are you getting any blood work done to see if this is helping? Although, I know some people's blood work doesn't match their symptoms. MY CRP directly corresponds to how bad I'm flaring, so I'm going to see if maybe my GI will let me do another CRP when I see him the end of the week to see if I've gotten worse. I am really hoping maybe this will turn around quickly. Do you have any extra intestinal symptoms related to your Crohn's? I'm wondering which symptoms go away first the bowel or extra intestinal ones.

Anyways, thanks for sharing your experience. You're inspiration to me and I'm sure many others who ready your journey!

Thanks, Big Betty. :) I am actually on Azathioprine right now, and I just found out yesterday that even though I was in the therapeutic level a few months ago when I got tested, I'm not anymore. So I'm actually kind of relieved and hoping that once I get back up the therapeutic levels that I'll go back into remission. So I'm not relying solely on enteral nutrition to keep or get me in remission. I'm just hoping it can give the medicine a boost until it really kicks in again.

Have you read the book "Beat Crohn's: Getting to Remission with Enteral Nutrition by Margaret Oppenheimer"? I bought it right after I started. It's a pretty good, easy read. She has some case studies in there of some people with Crohn's who had extra intestinal symptoms that did go away with enteral nutrition, but I don't think any of those cases involved Crohn's colitis. I'm giving it a shot anyway. Maybe you have it at your library and you can check it out. I found it motivating and pretty realistic. She doesn't make it seem like it will help everyone but shows that it can work really well.

Yes, that would be hard to know how well it's working for you since your CRP and Sed rate don't really correspond with your disease. I think it's very worthy of your trying it though especially with your family history. In the Beat Crohn's book, it did say that if you don't respond to one formula you may respond to another, as in if you don't respond to the versions with the whole protein, you may respond to the elemental formula with just the amino acids. (You may already know all this.) I bought some free amino acids to try though, and they were so disgusting that I don't think I could go that route unless I had an NG tube. Are you on any meds right now, if you don't mind may asking?

Anyways, please keep us all posted. You're doing great and have a great attitude. I know one of the reasons most doctors don't prescribe it is because they think it can be too hard to stick with, but you're showing everyone that it can be done.