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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » My Story: Success and Struggles with Elemental Diet and LOFFLEX


12-29-2015, 02:37 AM   #1
pepfido
 
Join Date: May 2015
Location: RED DEER, Alberta
My Story: Success and Struggles with Elemental Diet and LOFFLEX

Hi all,

I am a 21 yr old from Alberta, Canada, I have been "officially" dealing with Crohn's now for the past year. This is my first post after viewing and learning from here for a few months here now, I am very grateful for this informative and supportive community!

I'm finally deciding to write today to share with you about my success but also struggles to hopefully gain some advice/encouragement for not only myself but others who may be in my boat.

After I heard about my CD diagnosis I wanted to explore all my options to hopefully find a natural alternative to having to take a purely drug based therapy. As a young person, a lot of the potential side effects really scare me off.
I discovered an article on the LOFFLEX approach by Dr. Hunter online and was very attracted to the success that others have had in the past. I decided I owed it to myself to give it my best try before I pursued other conventional methods.

I started last summer with two weeks on EN (E028 Splash)... and that mostly cleared up all my symptoms within days. After those weeks I did the basic LOFFLEX followed by the reintroduction stages with quite a bit of success. (only a few major reactions) Before the diet my Calprotectin was quite high at over 3,000. After a couple months it dropped to around 400!

I was doing very well until things started to become very stressed with too much on my plate with school and work, and as a stress-coping mechanism and in part to busyness, my vigilance started to slip. Especially with the holidays and such I am now starting to experience a lot more symptoms and having been loosing some weight.

At this point I'm feeling quite down about it all. As a lot of it is on my own actions it does weight quite a bit and sort of makes me question my ability to make this work long term, even though I see the massive potential.

So I thought I would post my story to see if there was anyone who maybe had a similar experience or is maybe further down the road with diet therapy and could share some insight/encouragement. (I'm wondering if anyone has had more success with a partial elemental diet on a more long term basis) Also hope this can maybe encourage someone considering starting, as it truly is an amazing therapy.

Many thanks in advance for reading this and responding.

Happy New Year!

Dan
12-30-2015, 02:55 AM   #2
Lady Organic
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Hi Dan and welcome. thanks for sharing your story.

I have once tried Modulen IBD and Vivonex. I though E028 splash was for kids? Did you order it form your pharmacy with your doctor's prescription?

You are lucky EEN and LOFFLEX diet work for you very well. Im currently on another diet, more strict and still have to take strong meds. So you are currently under no pharma treatment and with regular fallow up with GI dr?

I would really encourage you to keep going with the diet. It is definately worth it. Crohn's can sometimes cause serious complications and the best way to prevent these is to keep in full remission. playing yo-yo with diet / treatment and disease is not a good management of crohn's and is risky; not worth it. wishing you well.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-17-2016, 12:38 PM   #3
Spooky1
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Join Date: Sep 2011
Location: South Northants, United Kingdom

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Hi, Dan, and welcome,
How's it going. I personally come off my very limited diet (plus 028Extra) for a few days over Christmas, but that's it really. I get severe reactions to all sorts of foods. So I just live with liquid feed and bland fish, boiled/baked potato and a tad of home made sauerkraut for the probiotics.

All the best
Diane
01-17-2016, 07:21 PM   #4
pepfido
 
Join Date: May 2015
Location: RED DEER, Alberta
Thanks so much Lady Organic and Diane... I'm sorry for the late reply.. Last few weeks have been a blur!

First off thanks for your support and suggestions, means a lot.

I though E028 splash was for kids? Did you order it form your pharmacy with your doctor's prescription?
Yes it is intended for kids, but my dietician (who worked with Prof. Hunter) was able to figure out the amount required to take based upon my needs, as they are similar formula wise to the regular E028. Being in Canada, I can't get the regular E028 without importing from the UK I believe, so thankfully I can get these splash from Nutricia in Canada. I tried long and hard to order it locally or get it under prescription, but to no luck. I would hope to maybe find another formula some day that was a little more natural but for now this works.

So you are currently under no pharma treatment and with regular fallow up with GI dr?
Yes you're right. No pharma treatment as of yet, but my GI oversee's my treatment with the diet (as well as a ND).

Thanks for your encouragement to be vigilant. It's something I really want to do, so I think I just need to set some parameters and live within those so it becomes less of a burden (i.e. these are the meals that I can eat, or quick meal options, acceptable dining out choices, etc. vs. a laundry list of avoids that can sometimes be overwhelming)...

How's it going. I personally come off my very limited diet (plus 028Extra) for a few days over Christmas, but that's it really. I get severe reactions to all sorts of foods. So I just live with liquid feed and bland fish, boiled/baked potato and a tad of home made sauerkraut for the probiotics.
Thanks Diane, I'm doing a bit better now that my stress is starting to get under control and I'm being more vigilant to the LOFFLEX and partial elemental. Your diet plan sounds very good, I have felt the best when I have done similar!

In the next couple weeks I hope to go for a short stint of sole elemental to bring the inflammation back under control so I'll update then..

Thanks again
Dan
04-03-2017, 09:17 PM   #5
Lady Organic
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Hi Pepfido!

how are you? Im thinking about giving a try to Elemental splash E028 if I flare when I finish prednisone in a few weeks.
(This is so silly, I just compared with the Elemental 028 from the UK (adult version) and its almost the same thing!) I cant believe I tried elemental Vivonex instead which was so horribly disgusting!!! I then tried it for arthritis onset 4 years ago, which was finally not managed by it. (study showed it helped and put RA in remission)
I tried also Modulen IBD which was not elemental for better taste and it failed for CD, two years ago. I tried it only two days, but symptoms continued to worsened so I could not wait any longer for taking prednisone: I was way too sick. I dont want to wait last minute now and would try elemental diet when symptoms are starting and mild.
Just checked with my pharmacy and Elemental Splash is available. The pharmacist tolf me my dr could ask for a special permission for treatment (exception medication) so the insurances could pay it. Did you have to pay for it or your insurances paid it?
What was your favorite flavor among the 3? Do you still take these?
Are you on a specific diet thats working for you right now or on meds?
hope to get of your news, thx!
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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » My Story: Success and Struggles with Elemental Diet and LOFFLEX
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