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03-23-2015, 05:30 AM   #1
littleshoes
 
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Join Date: Mar 2015
Location: madrid, Spain
EN not working?

Hello, I am currently at the end of week two of EN, using Elemental 028 and following Professor Hunter's protocol (on my own though as I live in Spain and no doctor wanted to help me try the EN approach).
Anyway, this is my 13th day and I still have painful bowel movements (especially in the mornings) and rectal bleeding.
Does this mean EN isn't working for me? It's very frustrating because I had so much hope put on it and I've spent most of my savings on the Elemental 028 feed...
Thanks for listening!
03-25-2015, 01:46 AM   #2
24601
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Join Date: Dec 2013
Location: London, UK
So sorry to hear that you're not feeling any better yet. I know Exclusive EN can often bring improvements quickly so I understand your hopes and frustrations.

Have you experienced any benefit from it in terms of reduction of symptoms yet?

It might be that the pain and bleeding you are experiencing would require more healing before those symptoms go away and the timescale for mucosal healing is longer than 2 weeks so you won't see all the benefits yet.

Are you doing it exclusively? And when you say Professor Hunter's protocol can you describe it a bit more?

Also I wondered are your doctors cooperating at all? Did you have any blood tests done before starting the EN? And if you did and had elevated inflammatory markers would your doctors repeat them so you can see if there is some improvement with the EN?
03-25-2015, 08:35 AM   #3
my little penguin
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EEN tends to take longer than steriods to induce remisson ( at least in kids)
Tagging Happy as she has used it before
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03-29-2015, 05:01 PM   #4
ncman
 
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Hi littleshoes, I wondered how you were getting on?
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
03-30-2015, 05:56 AM   #5
littleshoes
 
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Thank you so much for your responses, you are all very kind

@ 24601: Sadly no doctors were willing to cooperate with me at all so I decided to do EN by myself following the advice given in the book written by Professor Hunter ("Inflammatory Bowel Disease: The essential guide to controlling Crohn's Disease, Colitis and Other IBDs"). I have stuck to it exclusively for over two weeks, not a single bite of food in all that time. I have noticed some improvement, especially as far as bloating goes although I think my bowels would need at least two more weeks of EN to start healing. I can't afford much more of it (300 each week!) so I have started an Elimination diet based on both SCD and LOFFLEX. We'll see how that goes (up until now it has gotten rid of the 7-10 times a day diarrhea so I guess that's a good start!

@ my little penguin: thanks for the info about "happy". I have read a lot of her threads and it has helped a lot!

@ ncman:
hello! I am doing better thanks! I began eating a few days ago, still taking EN as well to get all the nutrients I need as I'm following an elimination diet and, at first, all I can eat is boiled chicken (so I need the extra EN nutrients to keep going). I have introduced boiled carrots with success, honey with not a positive outcome (irritated my stomach) and rabbit (tolerated it well)... Today I'll try cooked pears (scared about fructose though)... Hopefully I'll be able to create my list of "safe" foods with time and discard the aggravating ones, that's the goal anyway...

Oh, if anyone needs info or help on EN please feel free to contact me and I will share my experience and help the best way I can
03-30-2015, 07:48 AM   #6
24601
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Join Date: Dec 2013
Location: London, UK
Hi littleshoes,

I'm glad you're doing better! So sorry to hear that no doctors would help at all with this approach! Seems so completely crazy when there are studies showing that it helps the majority of patients.

Wishing you lots of luck with the elimination diet
05-04-2015, 01:53 PM   #7
Octobergirl
 
Join Date: Oct 2011
Location: Illinois

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Hi littleshoes. I was wondering how your elimination diet is going? I did EEN for 6 weeks and it worked but then I flared right away when I added foods back. I'm on EEN again, but it doesn't seem to be working now. I was wondering if doing the elimination diet when you're not technically in remission can still help you figure out what foods to eat. Do you feel any better since adding foods back in?
05-05-2015, 05:42 AM   #8
littleshoes
 
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Join Date: Mar 2015
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Hi Octobergirl!

I am sorry the elimination diet threw you back into a flare. It is so easy to flare, isn't it? Which diet are you following? Hunter's LOFFLEX? I follow SCD because LOFFLEX never really worked for me...

I think a very strict elimination diet can definitely help you figure out which foods don't agree with you, even if you are flaring, BUT it must be done so slowly it gets a bit frustrating. Like, four days on boiled chicken plus one new food ONLY, and I mean literally. Then you move on to the next food and repeat the process for a couple days... Sounds easy but is actually very hard. I managed to stick to that intro pattern for a few days but started to feel so weak that had to introduce more things at one. That is when everything got complicated, I could not tell which food was the culprit when symptoms kicked in... EN did help me settle things down although I must say it didn't induce complete remission. I did begin the elimination diet whilst still having diarrhea and abdominal discomfort....

Currently I am on SCD as I said and trying my best to stick 100% to safe foods but can't always do so due to the extreme weakness it brings along... This disease is tricky and difficult to treat but I am sure it can be done, using dietary treatment, as long as we are very committed to it.

My best advice is: do not rush into testing new foods until you are completely sure that the one you are currently testing is ok for you or things will get messy. Also, if you find LOFFLEX doesn't help, I'd suggest giving SCD a try. The book "Breaking the Vicious Cycle" gives you all the info you need plus there are tons of websites dedicated exclusively to this diet like pecanbread.com or scdlyfestyle.com

Best of luck to you! I'm here if you have more questions
05-12-2015, 11:07 AM   #9
Octobergirl
 
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Hi Littleshoes,

Sorry for the late reply. I was out of town for a while.

Yes, I originally tried the LOFFLEX after my first round of EEN, and I flared right away on that. I don't know why the elemental stopped working after the first round. But I completely know what you mean about how hard it is to the elimination diet. I went back on a couple weeks of EEN after the LOFFLEX didn't work, and then I tried the elimination but was like you, I had no energy.

I'm also on SCD right now. I've tried it in the past without much success and did it for 2 years, but I'm trying it again. When you do SCD, are you also adding back in one food at a time? When I did in the past, I wasn't that careful about adding back in one food at a time, because I was hungry and fatigued. I don't know if I need to treat SCD more like an elimination diet and that will be more successful.

Thanks for all your support and tips. I'm also on meds too, so I'm hoping that the combination can get me healthy again. Please keep us posted on your situation. I hope you can get to remission soon.
05-21-2015, 10:40 AM   #10
Spooky1
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I'm on E028Extra and I still have loads of gas and bloating. I also have my very bland diet which didn't cause bloating and gas whilst on Vital 1.5 which is another liquid food.
I so understand the cost, but at least I get mine free here in the UK.
You have done well with the elimination diet, but it can take a long while for the damaged intestine to heal really. I sympathise with you over this. Must say that breaking the vicious cycle didn't help me at all, I needed to cut food for a long while. So liquid foods do help give me the nutrition I need.
Hope you're doing well.
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