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01-10-2012, 01:53 PM   #1
happy
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Elemental and Elimination Success

This post is all about the success!

I will summarize what my problems were before this treatment success, my previous attempts with this treatment, and some of the problems I had along the way in a later post.

I resumed a full liquid elemental diet (VivonexPlus) for two weeks in July 2011 after a relapse of my symptoms. I only consumed the formula and water. After the two weeks, I started eating following a full elimination diet. I used the book, Inflammatory Bowel Disease: The Essential Guide to Controlling Crohn's Disease, Colitis and other IBD's by Professor John Hunter and information on Dr. Hunter's website: http://www.crohns.org.uk to help me.

Basically, the premise of the treatment is that you consume the elemental liquid nutrition until remission is induced. (This is a very important step. Some people try to obtain remission just by following an elimination diet. I was unable to find any research that supported the idea that remission could be obtained or maintained with just an elimination diet.)The theory is that the elemental diet somehow alters the bowel flora so that the inflammatory process does not have the flora that it prefers to feed on. You maintain the remission by testing individual foods to see if they cause any symptoms. Bowel symptoms are assumed to be caused by the current food being tested altering the bowel bowel flora in a negative manner. Stopping the food and consuming the liquid elemental diet again until the symptoms have settled and eliminating the offending food from your diet while eating only foods that have been tested to be agreeable to your bowel is how remission is maintained on the elimination diet.

I resumed eating food in August 2011. I started eating food very slowly. The following is my progression of food testing: rice, chicken, well-cooked and peeled fruits and veggies--pears and carrots, soya milk, bananas, peas, potatoes, soya margarine, olive oil, egg whites, honey, stone fruits, white fish, rooibos tea, green tea (de-caf) and very small amounts of good quality chocolate with no dairy. It took me about 9 weeks to be able to eat all of these foods.

I have since added quinoa and amaranth, other fish and seafood, tofu, almond butter, orange juice, asparagus, herbs (cooked) some spices, sugar, brown rice syrup and molasses. I am currently retesting cornstarch (it is in so many foods that I want to be sure that I can't tolerate it.)

I cannot tolerate milk products of any kind, including in medications( I knew that I was lactose intolerant before but I have learned that whey and casein also bother me). It has taken me a long time to be able to tolerate very much fat. I still limit the number of fruits and veggies that I eat, but I am now able to tolerate some of them raw and the extra fibre of their skins. I still limit the amount of fibre I consume as well.

I have not tested any other grains, legumes, nuts or seeds, as yet. I plan to test more fruits and veggies first, before I branch out to grains and legumes.

I have researched food families to help me test foods that I was more likely to have success with. For example, I chose to test almond butter first because it is not a legume (like peanuts are) and because it is related to the Plum Family, which has foods that I tolerate.

I am feeling the best that I have in almost two years. I still need to build up my strength and endurance, but my energy levels are improving daily. It is easier for me to travel and go out with my family due to the variety of foods that I can now eat and also because I can count on feeling well, without digestive issues to hold me back.

If anyone has questions about this process and thinks that I might be able to help, please ask me for specific information. However, I am not interested in getting into a medication vs. diet debate.

May we all discover the foods that we can enjoy because we can tolerate them well!
01-10-2012, 03:14 PM   #2
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Thanks so much for posting happy. I will follow your journey with interest and all the while learning along the way.

Dusty. xxx
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01-10-2012, 04:21 PM   #3
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Congratulations!!

Were you supervised by a GI or nutritionist or did you find your own way?

Have you previously tried other medications or are you recently diagnosed.

Would be very interesting for you to keep us posted with how you're getting on!

Paul
01-10-2012, 04:26 PM   #4
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Hi happy I am pleased things are going so well for you and I admire your dedication to looking at things carefully and not rushing into trying anything and everything all at once. Please do keep us posted on how things go
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01-10-2012, 04:43 PM   #5
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Wow! What a great success story. And you have some diligence. I give you a lot of credit, but it certainly seems like it has paid off.

I hope you continue to feel so terrific!
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01-10-2012, 07:17 PM   #6
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Congratulations Happy!!! I'm so glad you're feeling well!!
01-12-2012, 01:50 PM   #7
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Thank you for your responses.

@PaulPhoenix-- I chose this treatment regime myself, but I consulted a dietician and a hospital pharmacist for advice regarding additional liquid vitamins during this process. The medications that I have tried before are antibiotics--Flagyl and Cipro. I was diagnosed Sept. 2010; my symptoms started in Mar/April 2010.
01-12-2012, 02:09 PM   #8
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This is a summary of the entire process of following the liquid enteral nutrition.

I started a liquid diet of Ensure only in Dec. 2010 for three weeks. I found that I could not tolerate the Ensure as it worsened the symptoms of gas, bloating and diarrhea. I now know that all flavours of Ensure have milk ingredients (which I don't tolerate) and I suspect that the corn syrup is also something that I don't tolerate. I moved on to VivonexPlus (unflavoured) after researching what formula was made for IBD-type problems and was the least likely to have ingredients that I might be intolerant to.

I started the VivonexPlus formula only in late Dec. 2010. I continued on the formula until the end of April 2011. I did try several times to start eating again during that time, however my symptoms would soon return each time, so I would resume taking the enteral nutrition. My symptoms seemed to gone by the end of April and I had 'clean' scopes then so I began eating again following the LOFFLEX diet--low fat, low fibre, partial elimination diet.

I did well for about six weeks and them my symptoms starting coming back again. I decided to resume taking the enteral nutrition again at the end of July 2011 and then to eat following the more difficult full elimination diet once my symptoms were gone again. I described this process at the beginning of this post.
01-12-2012, 03:22 PM   #9
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It takes a while for the effects of the EN to work.

When I started the Ensure in Dec. 2010, I had already been quite ill the previous three months and had lost 25-30 pounds (however, I was overweight before I became ill). I lost another 10 pounds on the enteral nutrition before my weight loss slowed at the end of Jan. 2011. So it took 2 months for the EN to affect my weight.

When I relapsed in June/July 2011, I lost another 15 pounds before my weight stabilized again on the EN, after only two weeks this time. I have lost 55 pounds total and I am maintaining a healthy weight now while eating an only food diet--no EN.

Because of how ill I was before I started the EN, and because it took awhile for the EN to help, I developed some other complications. I developed blind spots (cotton wool) in both of my eyes in Feb. 2011. The opthamologist thinks that they were caused from severe malnutrition. He said that there is a lag time from how severely ill a person is to when problems show up in the blood work, but that the blood vessels in the eyes are very sensitive to changes in the body and will show symptoms first. The blind spots were due to anemia. I am very fortunate that they resolved by the end of April 2011 (while I was on the EN!). Because of some other problems that I am having unrelated to the IBD, I had a brain scan done in Nov. 2011. I have several lesions in my frontal lobe that may also be due to the malnutrition from then. (It explains why I was having such trouble with my memory, thinking and concentrating then--these things are getting better all the time.) The brain lesions will take longer to resolve, if at all. This will be rechecked in April 2012.

The EN can cause constipation both when starting it and when stopping it. Because I was trying to follow either the LOFFLEX or full elimination diet after the EN diet, I didn't want to consume something that might help the constipation but that would interfere with the diet. So, I used Lax-A-Day, which contains only PEG 3350, occasionally. Despite this, because of severe constipation when I resumed eating, I needed to dis-impact myself more than once. (Don't ask, please!) People might think this would be a relief from diarrhea--trust me, it is not.

EN is very expensive. Nine days worth of formula for me was $340.00 or about $38.00 a day. (This was a discounted price from my pharmacy). I wouldn't spend that much feeding myself for a day at home, so it definitely was an extra expense for me. (My drug plan limit is $500.00 per year.) Most children and adults would consume more than I did, so the cost would be more. However, I would be paying for the medications myself as well.

If others choose EN followed by the LOFFLEX or Full Elimination diet as their treatment, please know that the benefits are worth it, but like any other treatment there are challenges along the way.
01-12-2012, 06:11 PM   #10
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My symptoms started Mar/April 2010. Prior to this I had diagnosed myself with lactose intolerance and Irritable Bowel Syndrome. Up until the summer of 2009, I managed well by avoiding dairy products and understanding that sometimes I would have cramping, loose stools and bloating during very stressful times in my life.

I started to have more loose stool during the summer of 2009, for no apparent reason. Then over a weekend in Mar/Apr 2010, I developed acute symptoms of diarrhea, RLQ pain, bloating, blood and mucus, mild swelling in my ankles and shins, a mild fever and night sweating. However, nobody else in my family became ill (not that I was wishing it on them!). Soon a cycle started of me feeling better for a few weeks followed by a return of the symptoms. I would lose some weight, then gain most of it back, then lose it again when the symptoms returned. Then I started getting pain and pressure in my pelvis at night with nighttime bowel movements.

In Sept. 2010 a colonoscopy showed "twenty to thirty ulcers" in my terminal ileum. I was diagnosed with IBD--possible Crohn's. The pathology report came back normal--with an explanation from my doctor stating that, because of the skip lesions, it is hard to biopsy the diseased places. A small bowel follow-through showed the same lesions. An ultrasound said "not crohn's"--I was then diagnosed with Ulcerative Colitis despite not having any disease in my colon. I was offered Asacol initially, but chose not to take it as I was unsure of my diagnosis. I was not offered prednisone, but I would not have taken it due to previous experience with it for asthma. I agreed to take Flagyl and Cipro instead, in the belief that the sudden onset of my symptoms could have been precipitated by an infection. However, the antibiotics didn't help.

By December I seemed to be on my own. I had been referred to a GI specialist, but I was told to expect a wait of six months for an appointment. While I researched my options I tried a low residue diet, which did slow the diarrhea, but did not help the other symptoms. Through my research I realized that, in some places, EN is used for IBD to induce remission. I decided that while I was waiting for for assessment and treatment, EN was something that I could try because I was desperate by then to find a way to get nutrition in my body as I was tolerating only 400-600 calories of food daily. I think that because I was overweight to begin with, my doctor did not realize the urgency of my situation and I believe that if I had not done EN on my own, I would have ended up in the hospital, likely on TPN, in January 2011.

I have had many experiences with side effects from medications and I have had one type of cancer and a prophylactic treatment for another type that is common in my family, so I knew that no matter what type of IBD it was, I needed to find a treatment that had fewer risks than some of the meds, if possible.

As you can see from the rest of my post, it was not a simple nor an easy journey with EN and diet. However, I am glad that I gave it my best effort and stuck with it. I started this thread so that other people would have more information about the success and difficulty with EN followed by diet, especially if their health professionals are not familiar with it as a treatment option.

I am grateful to be eating food and I am surprised at how well I can eat and how creative I can be with the limited diet that I still have. I am becoming well, with normal bowel habits, and improving energy and activity levels.

May we all become well on our chosen treatment paths.

Thanks for reading and posting.
01-13-2012, 02:46 PM   #11
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Thanks for your story! You've certainly earned your remission. I've read in the same book that Crohns's can burn itself out after a number of years of elimination. Hopefully this is true.

I'm hoping to emulate your success and, this evening, just got off the phone with a dietician at our hospital who's ordering me some samples of Elemental 28 so I can choose the most palatable flavour. It was tough to get my GI and nurse to agree to me even trying it. They felt I would just become sick again after completing the diet. It's weird. Almost like there's some big conspiracy going on?!?! Anyway, I wanted to try it before going on to biologicals or more steroids.

Thanks again for sharing.
01-13-2012, 03:23 PM   #12
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Hi PaulPhoenix,
Any chance that you could make a trip to Addenbrooke's Hospital in Cambridge or at least call their dietary department? That is the hospital where the research was done that Dr. Hunter talks about in his book. One of the forum member's here (who is no longer active) got her treatment with EN and the full elimination diet there. After she moved away from the area she still made the trek to that hospital to get their advice on any problems that she was having. She was closely monitored and adjustments were made quickly by phone.

I wish you great success on your journey with Elemental Nutrition and the elimination diet.
01-15-2012, 01:14 PM   #13
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Happy: i may well have to get them to help. I'll see how far the hospital dieticians will go with me. Exciting times though. I need to decide whether to stop my immunomodulator (Aza) too. Ah well. Things always feel better when you have options...
01-15-2012, 03:04 PM   #14
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PaulPhoenix,
I don't have experience with the medications, but all the research that I have read states that you can remain on the meds with the EN. Once you are firmly in remission, then you can decide whether to stop your meds and carry-on with full EN and then either the LOFFLEX or full elimination diet, or continue with partial EN with a regular diet.

If you don't think that the meds are causing problems for you, it might be a good idea to just change one thing at a time--if you stop your meds suddenly, you might go into a flare that takes awhile to settle down, so you might think that the EN is not working and get discouraged.

However you choose to use the EN, I hope that it is a successful treatment choice for you. Please continue to post, so we know how you are doing.
02-06-2012, 06:26 AM   #15
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Hi,

Firstly congratulations and thanks for sharing. Very interesting story and further affirmation of the value of the Prof. Hunter/Addenbrookes approach. Unfortunately I do not live in England but I have had some real success in following a low residue diet.

Basically I realised that every time I had a "purge" before a colonoscopy (with 3 days very low residue diet beforehand) I was better after the Colonoscopy for a while. So last time I stuck to the low residue diet afterwards and only slowly reintroduced specific foods. Most of the foods you have reintroduced (excepting peas) are on my diet too. I also drink a lot of fruit juices to replace the whole fruit I used to eat and also tons of porridge, manuka honey and vitamin supplements.

I can maintain remission with Pentasa daily and - only when necessary - a five day low dose course of Prednisone (they wanted me to take Pred low dose permanently but I refused). Never more than once per month and preferably not at all.

I am convinced that diet is a key to maintaining remission.

The big question is has anybody found that secondary symptoms (arthritis etc) improve also as a consequence of the Addenbrookes regime? These are ther ones still bugging me and causing me to resort to occasional Pred.?
02-06-2012, 12:40 PM   #16
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Paul Cronk,
I am glad to hear that you are managing to keep most of your symptoms under control with your treatment regime. Congratulations!

As for your question about the secondary symptoms--I have no information for you about this. I don't have any EIM (Extra-Intestinal Manifestations). The problem that I developed with my eyes was related to malnutrition, not inflammation--so, I'm sorry but that is a question that I have not researched.

You could ask people on the EIM sub-forum page on this forum site or start a new thread on the EN thread under the Treatment sub-forum to get some response.

May you have continued success with your health.
04-07-2012, 08:46 PM   #17
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Hi happy. I am considering beginning th EN diet. I was wondering what you thought about making my own nutritional supplements with fresh juices and protein supplements..? I am going to try to find the book by Dr. Hunter, but in the meantime, I need something now and am afraid of the highly processed nature of the drinks like boost, ensure, etc... I was curious if you had an opinion on the matter. I recently posted my story in the specified forum if you are interested in it.
Thank you so much for your post, I was beginning to think I was one of the only ones not wanting to take medications first. I hope all is still well for you
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04-12-2012, 12:19 PM   #18
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calmcolon11,
about the delay in responding. I went looking for a resource for you and then never got back to posting...

First, let me say that it is very important that you are followed by a doctor/nutritionist while on a liquid diet. It is very easy to develop nutritional deficiencies while on a specialized diet.

Second, from your thread in the 'Your Story' forum, I wasn't sure if you were on any meds now. If you are, I would continue taking them while starting the EN. Then later, if you get to remission, you and your doctor can decide if you can go off of them.

Third, I agree with what David said in his post on your thread. IBD can be silently wreaking havoc if left untreated. Be sure to be very responsible with any new treatment that you decide to try, just as you would be if it were a prescribed medication.

Now on to the specifics of your question. Although I did start with the commercial prepared drinks like Ensure, I was also concerned about their ingredients. I also was kind of desperate, so a trial of those drinks bought me some time. Some people do very well on them; however, due to the milk ingredients, they bothered me. These drinks are a good place to start, though, and relatively inexpensive.

If you search the forum, you will find people who 'mix' their own formula, or rely on some kind of protein shake, or who 'juice'. I think for a few days, or as a supplement, these types of drinks are fine. However, if you are looking for something because you don't feel that you can eat at all, or for a long-term solution that could possibly bring on remission and you don't want to use the Ensure-type products, then I would recommend using a prescribed elemental formula like Elemental 028, VivonexPlus or Modulen. These types of EN have been formulated in a way to make the nutrients very easy to absorb and have the proper balance of sugars (what carbs get broken down into), fats and proteins that are easier for the body to digest, plus most of the necessary vitamins and minerals. (You still may need to supplement with a liquid vitamins and minerals-that's why you need a health professional to help you.) Any of the research that I have read that discusses remission with liquid diets always use these prescribed forms of elemental nutrition. Unfortunately, they are very expensive so you might need to be on some type of health plan or assistance to get them.

If you still think that you want to make your own formula, the book, Beat Crohn's: Getting to Remission with Enteral Nutrition by Margaret A. Oppenheimer, has a chapter on preparing your own EN. The book is well-researched despite the cartoon cover.

with your treatment choice and may you soon be feeling better.

P.S. I am well-still having some fatigue issues. Fatigue was better and now worse again, just waiting for blood results for iron deficiency again. Thanks for asking.
04-12-2012, 09:48 PM   #19
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Thank you foryour thorough response. I can't handle the boost drinks, that it is for sure. I am currently trying a program called Ideal Protein. I am under observation of the doctor who recommended it and getting bloodwork tomorrow or the next day. I have been doing it for 3 days and feel MUCH better. I am able to eat with the help of some enzymes called "DGST". He also is making I rake calcium, magnesium, potassium, fish oil, and a multivitamin to make sure that I am not missing anything. The diet does have"pre-digested" type of protein in them that is easier for me to absorb. It is a low carb diet (no more than 40carbs a day). It was designed for weight loss, but i just add calories by eating and extra ideal protein food or an extra helping of meat and veggies. I am keeping a close eye on my BMs and writing down everything. I am hoping it continues and my follow-up colonoscopy will be much better than my last. We shall see. Thank you again
04-13-2012, 12:20 PM   #20
happy
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Well that is an interesting treatment program. Thanks for sharing it with us. Please do continue to let us know how it is working for you.

It is great to hear that you are being supervised medically and that you are feeling better. Long may it last!
05-07-2012, 04:12 PM   #21
happy
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I am food testing "greens" this week. Wish me luck. Anyone care to join me in eating cooked lettuce?
05-07-2012, 04:31 PM   #22
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Good luck happy!...

I will join you but I have unfair advantage!

Dusty. xxx
05-07-2012, 05:38 PM   #23
happy
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Thanks Dusty.
I also meant to post that I ate a real sandwich yesterday: 2 slices of fresh rice bread with sliced chicken, sliced tomato, non-dairy buttery spread and lettuce! Heaven! It tasted so yummy and I could actually bite into it. One gets tired of cooked rice, cooked quinoa, etc.

I am so fortunate to be eating so well--I have actually gained 5 pounds recently. I do not need to gain anymore!
05-07-2012, 09:50 PM   #24
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That's fantastic happy, good luck!

I'll pass on the cooked lettuce though, sorry
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05-07-2012, 10:24 PM   #25
happy
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Thanks David. Chicken with sprouted brown rice, cooked carrots, cilantro and cooked lettuce for dinner tonight. So far, no problems!
05-08-2012, 10:39 AM   #26
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Congrats Happy!!! Sounds like its going well! Hope it continues and continues!
05-08-2012, 12:52 PM   #27
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Happy, how long do you test a single new addition before you deem it safe?
05-08-2012, 03:41 PM   #28
happy
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Thanks, Tesscorm.

David, in the beginning I would test a new food for about four days, but I found that it was too soon and I was having too many symptoms. So then I went up to a week for a new food. I have not tested wheat yet, but I plan to give that about three weeks before I test anything else.

I have found the slower the better, and I have more success this way. I no longer need to resume formula after symptoms develop; I just go back to eating the foods prior to the new one. I also start with small amounts of a cooked, peeled, no bits, version of a new fruit or vegetable, before trying it raw. I still only eat small amounts of a few raw fruits and veggies.

Anyway, I rarely develop symptoms on new foods now!
08-19-2012, 03:34 AM   #29
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One year of remission! More later.
08-19-2012, 09:33 AM   #30
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That's amazing happy!



*sits staring at the computer waiting for "more"*
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