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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental and lofflex diet?


07-01-2011, 02:54 AM   #1
kateg
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Location: hobart, Tasmania, Australia
elemental and lofflex diet?

hi!
Ive just joined this forum looking for some advice and friends who understand! I had symptoms for years, chronic diarreah, bloating etc and went arund many doctors looking for answers when i finally got into see a specialist and had lost nearly 20 kg i had a colonoscopy and was diagnosed with chrones in october 2010. I was furious when the specialist told me diet wouldnt make any difference, are you serious? I tried a short course of high dose prednisalone which wasnt successful. i cut out gluten and dairy which helped but not enough. Im really trying to stay off any drugs and am currently trying the lofflex diet after doing 3 weeks on elemental feeds, I already did tis once and was successful but got carried away when i felt so good and got slack with the diet, so i relapsed and had to start again. My main problem is where i live. Tasmania, Australia, where I cant find any health professionals to suport me on this treatment program, all I have is the book by proffesser john hunter. I would really love to hear from anyone who has tried the lofflex diet, I need support and motivation to keep going!
07-01-2011, 04:46 AM   #2
DustyKat
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Hi kate and

I'm glad you found your way here 'cause this is a fab place for support and info!

I can't help with your diet questions but if you put lofflex into the search you will find a number of threads that pop up about it. Unfortunately many here find that their docs discount diet having any role in treatment of Crohns. I personally don't believe that diet causes Crohns nor can it treat it effectively on it's own, however I do believe that it does play a part in alleviating symptoms during a flare and helps with a persons health and well being when in remission.

Diet is like many other things when it comes to Crohns, highly individual and a lot of trial and error. If you don't already it may be worthwhile keeping a food diary as well. I think the main thing is to keep an open mind and set yourself achievable goals, admit to yourself that if things aren't working it is time to move onto to something else.

Have a good browse though the Diet And Exercise forum and if you have any questions please don't hesitate to ask. I wish you all the luck in the world with your endeavours, welcome aboard!

Take care,
Dusty. xxx
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07-01-2011, 09:26 AM   #3
David
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Dusty gave you a ton of wonderful advice already that I can't add anything to. However, I did want to take a minute to welcome you to the forum I hope to see you around!

*hugs*
07-01-2011, 08:35 PM   #4
kateg
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Join Date: Jul 2011
Location: hobart, Tasmania, Australia
thanks to both of you, yeah i'm really pleased i finally decided to join this forum, seems like a nice caring place full of people in similar situations. Thanks for the advice, I am keeping a food diary and find it helps a lot. hope you are both going well x
03-20-2012, 07:03 AM   #5
Paul Cronk
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I was diagnosed about the same time. Like you I do not live in UK so cannot follow up directly with Prof Hunter. I did write to his office directly with questions but he has retired from the health service and the best I could do would be to fly to UK and consult with him privately at 260 per hour. No point in that because the diet will only work with complete support from dieticians on the same wavelength exactly.

So I am forced to consider diet as merely one of the important control mechanisms and I follow a diet based on this LOFFLEX diet, with some personal modifications. Together with drugs I think it helps to get you back in remission, but in my case not to stay there for long enough. For now I use short bursts say 10 days of Prednisone 10 to20mg to get into remission and diet/Pentasa to try to stay there. If this does not soon reduce the frequency of flares (currently about every month after coming off the Preds) then I will be forced to consider something else - probably Remicade because I have arthritic symptoms also which that drug would also address.

So to conclude my views: diet is vitally important but is only an element of treatment unless you are very close to Prof Hunter or someone similar. Pentasa is not usually a problem. Small and/or short doses of Prednisone can be very useful when you get to that "just give me something that will help me out of this flare" moment but have nasty side effects for longer and bigger doses. Remicade and/or other drugs should be considered if the above doesn't get you well.

This is my approach, everybody is different in their reaction to the disease and the drugs available, virtually all doctors have different views (including distressingly many who think diet is not useful) so there is a big big element of trial and error. Also, treatment for a 58 year old like me is more likely to include some drugs like steroids that would not be appropriate for a teenager starting out on a lifetime of this battle, because they will have more accumulated toxins and side effects.

My own doctor believes in a low fat, low residue diet but cautions to reintroduce some small amount of fats when you are well enough because you need them in some degree. Most other French doctors believe in drugs by the bucketful.

Good luck. Balance the desire not to take drugs with the need to control the disease before damage is done. Plus all the above could be complete bollox because I haven't cracked it yet and my flares are much too frequent! One day we may all be eating benign parasites to rebalance our immune systems but they haven't researched it well enough yet so let's not open that can of worms just yet.

Good luck
03-20-2012, 11:55 AM   #6
littlemissh
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Hi,
I am 5 weeks into an elemental diet and my GI and dietician want me to do at least another 8 weeks :-( I am also on humira, azathioprine and prednisolone but since I have gone onto elemental 028 extra I have actually put some weight on for the first time in many months.
They said really you should do at least 6 weeks elemental only before a staged reintroduction of food.
Though I miss food I am happy that for the first time in ages I am starting to feel better.
Good luck.
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
03-20-2012, 04:47 PM   #7
SarahD
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Hi kateg!

Welcome to the forum. I've been on the LOFFLEX diet for 2 weeks now, after 4 weeks on an elemental diet (elemental extra 028). My motivation is just starting to drop a little bit as I've been doing fairly well but wouldn't say that I'm in remission yet - but my symptoms are so much better now compared to how I was prior to going onto the elemental diet. So where are you with the diet right now - are you back on the elemental diet again or starting the LOFFLEX diet again?

I'm being treated at Addenbrookes under one of the dieticians that contributed to John Hunter's book, so I feel like I'm in good hands. I can imagine it must be really difficult to follow this kind of diet without the support of a dietician - I have pretty strong will power but I've only been able to stick to this diet because there's been someone there behind me telling me how to do it. It really is so hard when you have to check the ingredients of everything you eat and can't enjoy the food that everyone around you are eating. I guess I could do with some support and motivation too at the moment, maybe we can compare notes?
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