Progress update with enteral nutrition

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 4/18/2008 11:58 AM (GMT -7)   
Just thought I'd share my progress and a few observations. Last January I was diagnosed with Crohn's and decided to try enteral nutrition (EN) as a way to remission. I have been recovering from a drug-induced liver injury due to oral contraceptives, so I want to avoid medications if possible.
Overall, I would recommend EN to anyone--either alone, or in combination with your current medications--to try and achieve remission or lessen symptoms. I saw a change within days, before I was even on it exclusively. You should be able to tell fairly quickly if it will help you or not. I doubt it is necessary to stay on as long as I did.
My story...
The past months have been hellish so it's hard to say how much of the cramping I feel is stress-related...after being hospitalized last May I developed "spastic colon," a.k.a. IBS. I never had typical Crohn's symptoms, mainly high fevers, abdominal pain, and my inflammatory markers were up. In December my CRP was 19 (normal <1) and ESR was 58 (normal <21). I have inflammation at the terminal ileum and it's narrowed. In January I was having crampy pain every day, worse after eating.
What I did...
I transitioned to EN by replacing one meal a day with Nutren 1.5, over a little more than a week. I stayed on EN exclusively for 8 weeks, and had a blood test done every four weeks.
What happened...
I felt less cramping as soon as I switched to EN. After transitioning and being on EN exclusively for a few days, I had a blood test in February and my CRP was 0.7, ESR was 38. After the first few days I plateaued and did not feel near-normal until about five weeks later. Blood test in March at 4 weeks: CRP 0.6, ESR 21; blood test in April: CRP 0.5, ESR 20. I have not had another fever since December.
According to my doctor this could be remission. He's not sure if it's the diet or just spontaneous, but either way he's VERY suprised that I am surviving without Entocort and Imuran--he wanted me on both starting in January.
That's the good news!
The slightly bad news is that while I was on EN, two of my liver enzymes started to creep upwards (ALT and AST) and are slightly above normal. My ALP was high in the past due to the contraceptives and that has remained low. Can't be certain till I get off the diet, but I think that the high fat content of the Nutren is causing the ALT/AST elevation--maybe mild fatty liver. Hopefully that's all, nothing more serious. If so this is disappointing because I tried EN specifically to avoid more liver trouble.
Starting over a week ago I reduced the Nutren 1.5 to about two cans a day and am eating food again. I plan to stick with that at least through my next blood test in May. I picked up the book "The IBD Remission Diet" and am following the reintroduction plan given there. I also added supplements: a probiotic in the morning, omega-3 from fish and flax oil, vitamin E, folic acid, and a psyllium fiber before bed. So far the adjustment back to food is going OK.
My goal is to follow the SCD. I've used the last eight weeks on EN to collect cookbooks and test a few recipes on my husband. Spaghetti squash was a hit. I have read the Maker's Diet and am adopting that insofar as buying natural/organic foods. I also liked the book "The 150 Healthiest Foods on Earth" by Jonny Bowden--it tells you the merits of foods and which fruits/veggies to always buy organic. Right now I'm reading "The Inflammation-Free Diet Plan," sounded relevant to Crohn's.
Also trying resistance exercises to gain some (muscle) weight. I'm too thin everyone tells me.
A few comments...
Living without food was not difficult as long as I felt bad. I became hungry on a schedule and ate four times daily. I still cooked for my husband every day and "ate out" at restaurants with friends. But as soon as my symptoms were mostly gone, it was a more of a struggle.
Monitor your weight closely on EN. While a nutritionist told me I would be OK with 1200 calories, I lost weight, so I ended up doing at least 1500 calories a day.
I had to travel often, so I got a note from my doctor saying I needed the Nutren 1.5 four times daily. I was able to bring a few cans through security several times after showing the note to TSA agents.
Nausea was a problem in the beginning. I found that diluting the formula with water and drinking it slowly helped.
If you are considering EN, don't use a formula with fiber. I tried this first after a nutritionist recommended it. Bad idea--it tastes awful, made me constipated at first, and caused more nausea.
There are a number of formulas available. If, like me, your normal diet is low in fat, try a formula that is also relatively low in fat. Once I finish the Nutren I plan on switching to something else.

Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 4/18/2008 5:01 PM (GMT -7)   
Your story is amazing! I just want to say congrats to you for taking the bull by the horns, so to speak! I hope you have continued success!
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.

Regular Member

Date Joined Feb 2006
Total Posts : 31
   Posted 4/18/2008 5:53 PM (GMT -7)   
Thank you for sharing this!!  It sounds like you are drinking your fluid diet rather than feeding through a tube, is that correct?
I have wanted to try this as an alternative to Prednisone when my GI wanted me to start steroids, but she said it wouldn't be effective for me since my Crohn's is mainly in the terminal ileum and colon.  Does that sound accurate to you?  Is your inflammation mainly in the small intestine? 
Good luck!
Diagnosed with Crohn's disease 11/05
SCD since 12/05
Asacol 12 x 400mg per day
fish oil, green tea extract, bee propolis, coconut oil, ginger

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 4/18/2008 7:46 PM (GMT -7)   

Congratulations! It's frustrating the liver tests aren't totally normal, but getting both of the inflammatory markers down to normal is great. Enjoy your return to regular food.

If you need to do another round (hopefully not for a long time!), three lower-fat formulas you could consider are Vivonex T.E.N. (elemental formula with 10% fat), Vital HN (semi-elemental formula with 9.5% fat), and Ensure (polymeric formula with 21.6% fat) (note that Ensure Plus has a higher fat content).

Butterfat (love that name!),

It works best for small intestinal disease (ileal or elsewhere), and least well for Crohn's colitis (Crohn's in the large intestine only). Ileocolonic disease falls somewhere in between, and often responds quite well. Only way to know is to try it and see.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 4/18/2008 9:03 PM (GMT -7)   
Thanks, E-Mom. Right now I'm crossing my fingers for a long-lasting remission.

Butterfat-- I did drink the formula, so I bought the vanilla flavor. The taste is somewhat like soy milk. You can buy flavoring packets but the ingredients are all artificial, so I decided not to use them. It's not great, but you get used to it.

And thanks to you too, Writer-- you have been very helpful. I am hoping my ALT/AST start to go down once I am eating more normal food. I think switching from my usual high fiber/low fat diet to the Nutren may have been a shock to my system...I'm hoping that's all it is. Since Ensure is lower fat, I'll switch to Ensure when this case of Nutren is finished. If my liver enzymes start to normalize I want to keep on doing at least 500 calories a day from EN for another two or three months to help keep my weight up. There's not as much evidence that partial EN will help maintain remission, so I doubt I will stay on it for too long.

I also was in touch with University of Chicago again. I sent them my CT scan from December and the radiologists said my liver size is now within normal limits for a person my age. Good news, considering that I had "massive hepatomegaly" last May!

New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/19/2008 2:43 PM (GMT -7)   
Hey Illini - I am also in Champaign. Do you see a GI doc in Champaign or Chicago?
Diagnosed with Crohn's Disease in 1999.
Bowel resection in 2003.
Have taken Asacol, Pentasa, Prednasone, Entocort, Remicade, 6MP (and probably forgetting something!)

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 4/19/2008 3:51 PM (GMT -7)   
Both, kind of.
Since my problems started with my liver, my GI doc is the hepatologist at Carle Clinic. 
I have also seen a hepatologist at University of Chicago. Hopefully in May or June I will go back for a consultation with an IBD specialist. My understanding is Chicago takes the top-down approach to IBD treatment, so I don't expect to keep them as my GI doc, but we'll see.
Being a student I also have access to McKinley Health Center. I see my primary and have bloodwork done there monthly...It's "free," or I should say, included in the fee I pay. That has been very helpful.

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 4/20/2008 4:53 PM (GMT -7)   
wow i am in champaign too.been on scd for 5+ years now(not so strict anymore). I gave up on Carle years ago.

Mike W
Regular Member

Date Joined Aug 2006
Total Posts : 89
   Posted 4/20/2008 7:14 PM (GMT -7)   
Aoccc, so the SCD diet has helped you then?
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 4/20/2008 9:46 PM (GMT -7)   
Illini -

I use liquid diets when I start to flare too but I mostly make my own smoothies w/ slim fast powder, protein powder, a bananna, yogurt, soy milk, etc. I like the fresher taste than something out of a can. Would you be able to incorporate some home made smoothies into your diet or did your doc want you on a prescribed liquid?

26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 4/21/2008 12:07 PM (GMT -7)   
My doc didn't give any input regarding the diet, other than he didn't think it would work. He gave me a few options, namely entocort & imuran, entocort only, or "do nothing." He considered the diet to be in the last category.

I liked the idea of using the cans since I know I'm getting the nutrition I need, it was important to me since I'd be on the diet so long. But home-made smoothies are a good idea, and I think I'll start doing that once it gets warmer!

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 4/21/2008 2:12 PM (GMT -7)   
yeah my doc didn't seem too interested in the diet until i came in with all my weight back and some real color in my skin again :)
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, January 24, 2018 2:58 AM (GMT -7)
There are a total of 2,920,897 posts in 320,490 threads.
View Active Threads

Who's Online
This forum has 159509 registered members. Please welcome our newest member, TranDng79.
284 Guest(s), 2 Registered Member(s) are currently online.  Details
winglets, florbar