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02-20-2012, 11:37 AM   #1
SarahD
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Elemental diet: how quickly does it start to help?

Hi there,

I'm new to this forum but have been reading several peoples posts over the last few weeks and have found the wealth of knowledge and experience here to be very helpful.

I was originally diagnosed with UC at the age of 13, but have recently been told that I actually have Crohns. The main symptom I get is lower right abdominal pain, over my ileum. I've been in a bad flare since July last year and started an elemental diet 13 days a go to try and give my gut a bit of rest. I was hoping the pain might have reduced by now, but unfortunately it hasn't. I just wondered what others experience with elemental diet was with regards to how soon things started to settle down and how quickly your abdominal pain went away? I'm really hoping that I just need to give the diet a bit more time. My dietician told me I'd need to be on the elemental diet for 2 weeks before going on the LOFFLEX diet for another 2 weeks, but not sure I'm ready to move on to that stage yet. I see the dietician again tomorrow so will know more then, but it would be really nice to know how others have responded to the elemental diet.

Thanks,

Sarah
02-21-2012, 02:24 PM   #2
littlemissh
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I have been advised that if it works it works quickly (improvement within couple of weeks) but I have been advised that it is elemental only for 6-8 weeks then phased food introduction following the 6 stages of food introduction.
I have noted some improvement in diarrhoea and put some weight on - which is remarkable for me...and great.
Have you noted any benefits? The studies/guidance say really only induces remission in upper gi/small bowel and not that good with colitis.
Standard liquid diets work in colitis by giving bowel rest and geting through strictures but it doesn't have to be elemental in this case.
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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.
02-21-2012, 02:46 PM   #3
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yep this usually works very fast within a week to two weeks should be in remission.. after six to eight weeks introduce food again some people then get a good few months remission from doing this... however doctors prefer to put children on it and treat adults with steroids.
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Diagnosed 2002, crohns of the dudoneum, ele--"mental" diet six months of my life
omeprazole predesoline.. resection surgery X1 balloon dilation x2
still keep bouncing back!!
02-21-2012, 03:26 PM   #4
littlemissh
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Hi dan, another with duodenal crohn's- has your duodenal crohn's been under reasonable control- if so how. I am on Pred and omeprazole 80 mg, aza and still new duodenal ulcers . Hoping humira will help. Not many on the forum have it (gastroduodenal disease) and wonder what's worked for the few that have it!
02-21-2012, 04:34 PM   #5
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Hi littlemissh iv had crohns in my dudenal aprox four year had one large ulcer now gone and have a stricture in it iv had two ballon dilations for this and a couple of courses of pred... apparently its very rare in the dudoneum and surgery can carry complications some years after due to bypass being the only option.. however i rarely get trouble with mine touch wood and when i do the hospital act fast with meds and ballon dilation

How does your treat you have you got a stricture in it e.t.c.
02-21-2012, 04:43 PM   #6
littlemissh
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My crohns started august 09 but duodenal etc since june this year.
I've so far had 4 duodenal ulcers, one large gastric and multiple small gastric erosions. Unfortunately they bleed a lot and one duodenal one perforated in November. They are not settling do far with meds even pred and 80 mg omeprazole-so now started humira. I have an nj tube to bypass the ulcers and let them setttle and just started on humira and been on elemental 2 weeks.

Elemental diet seems to be making my small bowel crohns better but the upper abdo pain from duodenum and stomach no better yet. There was talk of partial gastrectomy but really hope humira means I can avoid this.
What dose of Pred and ppi works for you, did elemental work for your upper GI crohns?
02-21-2012, 05:08 PM   #7
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it sounds like what they are doing for you now with a nj tube is a very good idea i really really think that will give your ulcers a good chance of healing have they given you a time line of how long you have to do that and how long you have already been on it.

I have high doses of pred now and then and i feel like that is going to cause me gastric erossions i make sure i fill my stomach right up before i take them im sure its the pred that caused me my last large ulcer in the dudoneum... and i too have found it bleed a lot mine would usually settle after three days and come back every two to three weeks
and bleed

Elemental diet did me wounders no side effects and my insides really healed up like brand new i could eat absaloutly any food i liked for a good two years after. evan when im doing well i always have one elemental drink every morning i find this keeps my vitamin levels up stomach setteled and higher energy

i am worried though it will lose its effectiveness if i have to do it again like most crohns meds do

What hospital is looking after you? and what treatment has been your favorite so far for your problems
03-01-2012, 01:20 PM   #8
SarahD
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Just a quick update in case anyone is interested.

I've been on the elemental diet for 23 days now and I think in the last 2-3 days I've started to see a little bit of an improvement in my pain. I can't say it's gone completely - far from it - but the abdominal pain seems to be getting less frequent and a little less intense. I'm hoping this is the effect of the diet rather than the natural course of the Crohns, time will tell!
03-01-2012, 03:11 PM   #9
littlemissh
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Sarah, that's good news. I hope you continue to improve.

. I have been on for 3 weeks now. I would also say that there has been an improvement . It hasn't put me in remission , in fact I've just got back from the ed where had to stay overnight for another 3 unit blood transfusion etc.
But I have fewer bm's than before and have actually put on 0.5kg per week on average which is very exciting - I've nearly reached a BMI of 16!!
The dietician and gastro think this is due to the elemental absorbing better as my other feed though liquid and more calories didn't help with weight or reducing bm's.
Hopefully now the humira will get going and the 2 treatments together will give further improvement.
03-01-2012, 03:40 PM   #10
SarahD
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Glad to hear that you've had an improvement too littlemissh 1.5kg weight gain in 3 weeks is excellent, how many units of the elemental 028 have you been taking each day? I've been on 8 units (a mixture of cartons and powder) and my weight has actually stayed almost exactly constant for the time I've been on it. Fingers crossed we both continue to see improvements.
03-01-2012, 04:13 PM   #11
littlemissh
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My dietician advised 4.5 cartons each twelve hours. It's the most that will fit in the container for the pump. So 9 cartons per day. This was calculated for my weight of 42kg/height 168cm.
She said although less calories than my previous feed ( nutrison) as it is totally broken down absorption should be better. It seems to be right as I had virtually no weight gain in 2 months of 2400 calorie/day of nutrison.

Are you underweight , my dietician says that the more underweight the quicker the initial weight gain. Are you wanting to put a lot of weight on?
03-03-2012, 08:06 AM   #12
SarahD
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I'm a little bit underweight, my BMI is just over 18 (weight 48kg, height 163cm). It makes sense that the more underweight you are the quicker you gain the weight. I've also found that the elemental drinks run through me quite quickly no matter how slowly I drink them, so I don't think I'm absorbing as much as I could be. It's quite hard trying to drink 8 cartons over a period of 15 or so hours, I guess having the pump helps because you can receive the drinks whilst you're asleep too.

I spoke to my dietitian yesterday and all being well this weekend I can try introducing some food off the LOFFLEX diet on Monday, which threw me off a bit as I thought I'd have to wait until my symptoms had gone completely. I have some plain rice cakes at the ready and I don't think anyone has been this excited about rice cakes before
03-07-2012, 04:55 AM   #13
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Hi anyone on this thread!
I'm on the elemental diet over a week now. Probably one of the most difficult things I've had to do! :L people don't stress enough how difficult it is! I wasn't in a bad flare when I started so I haven't experienced relief for want of a better word!
Woke up this morning with stomach pain. Wonder if it's working? I have Large bowel, small bowel and peri/anal Crohn's disease. I was diagnosed when I was 10 and now 11 years on after many bouts of medication, would love to be able to control my Crohn's alone!
Anyone else feeling tired on the elemental diet? Very little energy the past week. Any feedback would be great
Sarah C
03-07-2012, 05:11 AM   #14
DanHerefordshire
 
 
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crohns in genral can make you feel very tired.. this is also a normal to feel tired when doing a liquid diet make sure you drink all your drinks.

How long have you got to do it for?

six weeks is the best amount of time to do it for to let your bowell fully repair time goes very fast if you can stick at it for six weeks the benifits and rewards after will be well worth it.
03-07-2012, 09:52 AM   #15
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I've been told six weeks, although for my sanity, I keep telling myself four weeks!
I've been writing a blog about my day to day feelings on starting it and hope that i'll be able to stick to it and blog about reintroducing foods too.
Hopefully if anyone is thinking of going on the elemental diet, they might find it useful or a few of you might in this thread
http://ibdelemental.blogspot.com/
03-07-2012, 10:10 AM   #16
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I've been told six weeks, although for my sanity, I keep telling myself four weeks!
I've been writing a blog about my day to day feelings on starting it and hope that i'll be able to stick to it and blog about reintroducing foods too.
Hopefully if anyone is thinking of going on the elemental diet, they might find it useful or a few of you might in this thread
http://ibdelemental.blogspot.com/


You will have great results from six weeks will be well well worth it...
If your finding your still hungry and tired try and drink more drinks your doctor should give you more no problem

I read your blog your a very talented writer especially for an 11 year old you have explained your feelings well and put good humor into it... i thought sombody wrote that who was a lot older... hopefully you will keep up the good bloging

And derren brown bet he was good
03-07-2012, 10:23 AM   #17
littlemissh
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I've been told 6-8 weeks, I'm now 4 weeks in and my dietician is contacting me next week to discuss next steps, though due to problems with my Crohn's I may be going onto TPN.
Whether I will be able to start taking food orally if this happens I am not sure. Still hoping that I can avoid TPN though as the infection risks are a bit scary.

I have found the major benefit for me has been an improvement in weight. I agree with Dan, it is difficult to tell apart the tiredness from Crohn's and any new treatment.
It sounds a bit strange but I find smelling nice foods helps me as its almost like eating them without the chewing bit.

Good luck Sarah...I think I should change my name to Sarah to be on this thread!!
03-07-2012, 10:43 AM   #18
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Just to clear up any confusion, I'm actually 21 but I hope the blog is useful! On ensure plus, 6 drinks a day. What about you guys?
(Derren Brown was amazing btw )
03-07-2012, 11:03 AM   #19
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I've been told 6-8 weeks, I'm now 4 weeks in and my dietician is contacting me next week to discuss next steps, though due to problems with my Crohn's I may be going onto TPN.
Whether I will be able to start taking food orally if this happens I am not sure. Still hoping that I can avoid TPN though as the infection risks are a bit scary.

I have found the major benefit for me has been an improvement in weight. I agree with Dan, it is difficult to tell apart the tiredness from Crohn's and any new treatment.
It sounds a bit strange but I find smelling nice foods helps me as its almost like eating them without the chewing bit.

Good luck Sarah...I think I should change my name to Sarah to be on this thread!!





Make sure your dietitian is communicating well with your surgeon my dieatitian told me to start eating again after six weeks... it didnt feel right so i called my surgeons secutary when i got home and she called me back the following day and said my dietitian is well out of order the surgeon has to do a colonoscopy and endoscopy before i eat again... i almost had to start the 8 weeks again from the dietitians mistake.... you may have a more organised team than me though.. and your dietitian may actually talk to your surgeon
03-07-2012, 11:12 AM   #20
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To be honest my dietitian seemed a little...clueless??
She gave me a very odd system she couldn't explain in how to reintroduce food. She didn't know how to explain it herself really, so my plan was to follow dr. John hunters guide on how to reintroduce food, with Lofflex for two weeks and then start reintroducing food. I don't have a surgeon, luckily enough I've never had to go under the knife as of yet, but she hasn't booked me back in to see her, merely telling me to ring her if I have anything I need to ask...
I'm guessing this isn't how most dietitians would operate!
What foods have people reintroduced first?
03-07-2012, 11:22 AM   #21
littlemissh
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Sarah-Last time on a liquid only diet (not elemental that time)I got a little booklet which had the various stages of food reintroduction in it. It is produced by the IBD dietietic team. It seems odd that you have no follow up with your dietician. Is she an IBD dietician. I have telephone follow up with my dietician or she comes to see me when I am on the ward.

Dan- she is following me up after my gastro appt. She often then speaks with my gastro and sees what my clinic weight is and rings me. The IBD dieticians always attend the regular IBD team meetings as well. She hasn't mentioned food reintroduction as yet, though did say that a higher calorie feed may be combined.

But to be sure I think I will check with my gastro on monday what he thinks. I would rather stay on it for longer than cause any deterioration at the moment.
03-07-2012, 11:22 AM   #22
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Just to clear up any confusion, I'm actually 21 but I hope the blog is useful! On ensure plus, 6 drinks a day. What about you guys?
(Derren Brown was amazing btw )
hahaha i feel well stupid i miss-read the 10-11 sorry....no wonder i thought your writing was really good..

i did elemental 028 powder sachets 8 a day= 12 pints worth of liquid drinks per day

i have no experiance with ensure they look qutie small though what ml size are they?
03-07-2012, 11:33 AM   #23
littlemissh
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I am on 8.5 x elemental extra cartons- 250ml per carton but via a tube so no drinking required!
03-07-2012, 01:40 PM   #24
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SarahC - good name choice

I started to feel the benefits of the liquid diet (8 cartons a day) after just a few days in terms of my energy levels, though I had been eating very little for a few weeks in the run up to starting the liquid diet and I think really my body was just shutting down - so the extra nutrition was very noticeable to me. I continued to feel pretty good energy-wise for the whole time I was on the liquid diet, which was just under 4 weeks.

I found food to be really tempting but you just have to think of the rewards if you can stick with it. I had some really weird food cravings too whilst on the drinks - for things that I don't really like usually. Very odd. By the third week I was still having cravings but the time seemed to be flying past so it wasn't quite so hard not being able to eat.

I didn't have any improvement in my pain until the 3rd week, so was starting to feel that the diet wasn't working. But then I had a few days where the pain was a tiny bit less frequent and it mostly kept improving from that point onwards (with a couple of bad days thrown in to make me doubt my progress again).

I started the LOFFLEX diet on Monday. I'm still having 4 cartons of elemental a day and then having small meals at breakfast, lunch and dinner. I've had a bit of pain since starting to eat again but I'm not sure whether this means I'm reacting to the food (so far all I've had is boiled rice, poached chicken breast and salted rice cakes) or just because I'm not used to having food in my gut anymore. I was told initially that I'd only need to be on the liquid diet for 2 weeks, but it sounds like 4-6 is more usual. I was also told I'd need to be on the LOFFLEX diet for 2 weeks before I can start testing new foods.

I'm happy to try and answer any questions you have. This is the first time I've gone down the diet route for my Crohns and I was starting to feel really discouraged by week 2 on the liquid diet as I wasn't seeing any improvements and my morale was a bit low from being deprived 'normal' food. I had a nice day out shopping with my mum and treated myself to a couple of new things which helped I think
03-07-2012, 01:57 PM   #25
littlemissh
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Sarah D, my booklet for food reintroduction says that some abdo pain on food reintroduction is normal/expected.
03-07-2012, 02:03 PM   #26
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Thank you so much littlemissh, that's very good to know!
03-07-2012, 02:06 PM   #27
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By the way littlemissh, I noticed that you're from P'boro (please correct me if I'm wrong - I was nosing at the map thread and saw you on there). Are you being treated at Addenbrookes? This is where I'm being seen, but I wasn't given that much information other than a list of good and bad foods and a list of recipes. I'm tempted to buy Dr Hunters book but wonder whether it's just going to repeat the information I've already been given.
03-07-2012, 02:50 PM   #28
littlemissh
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Hi,
I am mostly seen at my local hospital (where my IBD dietician is based) but also go to addenbrookes.
Could you ring the dietetic department and ask for a patient leaflet?
03-07-2012, 03:08 PM   #29
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I'll try that, thanks. I need to call my dietitian towards the end of the week anyway to get some blood test results so I can ask then.
03-07-2012, 03:18 PM   #30
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I have doctor hunters book! That's what inspired me to tell my doctors to take me off medication! Great lay out of what foods to introduce although if you're getting the info off the man himself I'm sure there's no need!
SarahD, great info there! I'm certainly going to try and stick it for at least four weeks! (: Let's hope my energy picks up. I'd be quite an active person, before going on the liquid diet, going to the gym 4 times a week at least but I'm tired all the time now. Fingers crossed that changes soon enough
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