Elemental diet: how quickly does it start to help?

SarahD · Feb 20, 2012

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

littlemissh · Feb 21, 2012

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.

DanHerefordshire · Feb 21, 2012

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.

littlemissh · Feb 21, 2012

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!

DanHerefordshire · Feb 21, 2012

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.

littlemissh · Feb 21, 2012

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?

DanHerefordshire · Feb 21, 2012

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

SarahD · Mar 1, 2012

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!

littlemissh · Mar 1, 2012

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.

SarahD · Mar 1, 2012

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.

littlemissh · Mar 1, 2012

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?

SarahD · Mar 3, 2012

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

SarahC · Mar 7, 2012

1 week down!

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

DanHerefordshire · Mar 7, 2012

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.

SarahC · Mar 7, 2012

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/

DanHerefordshire · Mar 7, 2012

SarahC said:
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 :thumright:

And derren brown bet he was good

littlemissh · Mar 7, 2012

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!!

SarahC · Mar 7, 2012

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

)

DanHerefordshire · Mar 7, 2012

littlemissh said:
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

SarahC · Mar 7, 2012

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?

littlemissh · Mar 7, 2012

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.

DanHerefordshire · Mar 7, 2012

SarahC said:
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..:ysmile::ysmile:

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?

littlemissh · Mar 7, 2012

I am on 8.5 x elemental extra cartons- 250ml per carton but via a tube so no drinking required!

SarahD · Mar 7, 2012

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

littlemissh · Mar 7, 2012

Sarah D, my booklet for food reintroduction says that some abdo pain on food reintroduction is normal/expected.

SarahD · Mar 7, 2012

Thank you so much littlemissh, that's very good to know!

SarahD · Mar 7, 2012

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.

littlemissh · Mar 7, 2012

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?

SarahD · Mar 7, 2012

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.

SarahC · Mar 7, 2012

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

littlemissh · Mar 7, 2012

Sarah C,
Is your dietician aware you go to the gym 4 times a week as she needs to include that in her calculations for your calorie requirements. You may not be taking enough calories.

SarahC · Mar 7, 2012

Yeah I told her and she said she included this in her calculations! A week off from college now. Maybe my body needs rest. Can't be easy coming off medication and food and hoping to run in the same way I suppose! Think about the mountain of medications we've already been on!

SarahD · Mar 8, 2012

SarahC, did you completely come off your normal medication when you started the diet? I wasn't quite sure from what you said about the asking the drs to take you off your meds whether you had actually done this or not. If you have, the lack of energy could be to do with that maybe? What meds were you on and did your consultant agree to you stopping them? I've been taking my usual meds (Pentasa, 3g daily) all the way through being on the elemental diet - not sure if that's the same for everyone (Dan? littlemissh?).

littlemissh · Mar 8, 2012

I've continued on Pred and aza and also had humira added the same week as I started. Trying everything so stoping meds was not an option.
I hope to be able to start reducing Pred though in the next month or 2.

SarahC · Mar 8, 2012

Yes I'm currently off all medication. I was injecting Humira every two weeks and my IBD team are behind this decision. Hopefully it works. Feel like I've turned a corner today. Feeling great. Let's hope it lasts!

Tesscorm · Mar 8, 2012

Hi,

Just thought I'd jump in and offer my experience through my son...

He's 17 and was diagnosed in May. His crohns was in small bowel, TI, a bit of inflammation in his duodenum and his colon. His only treatment has been EN. He started with 6 weeks exclusive - he was allowed broths, clear fluids, jello, etc. Since then, has been on half the dose, 5 nights per week. He ingests the formula overnight through NG tube (he inserts each evening and removes in the morning). After the six weeks, he reintroduced all foods.

His formula is called Tolorex, during his initial six weeks he was taking in 3,000 calories per day. He was always slim (5'10", approx. 147 lbs) and then lost 20 lbs before diagnosis. He gained a bit of weight during the six week period (maybe??? 10-15 pounds) but really started to gain weight once he began to eat again. In total, within three months, he gained 30 lbs and stabilized there.

He's being treated by a large children's IBD clinic in Toronto and they seem to be fairly involved and proactive re EN. Initially, I was in regular contact with the dietitien and this was the reintro schedule of food (this was done while tapering down the dose of EN to his current 1/2 dosage):

3-5 days - reintroduce 'white' foods - white bread (any type), rice, pasta, rice krispies or plain cereal (very low fibre, no milk), plain muffins, broth. He was allowed small amounts of toppings - i.e. a LITTLE bit of butter, nutella, low fat cream cheese, strained tomato sauce.

Next 3-5 days - low fat proteins - any type but I stuck mainly with chicken, fish, eggs.

Next 3-5 days - fruits and veggies - soft fruits/veggies, no skins, no membranes (skin around orange 'segments')

Next 3 - 5 days - low fat dairy - milk, cheese, etc.

And then all else as tolerated.

His only permanent restrictions are no seeds (sesame, sunflower, tomato, etc.), no popcorn, no nuts (nutella or peanut butter okay, just not pieces of nuts).

Where the range of time is 3-5 days, I usually stuck with 4-5 days (I didn't want to rush it...)

Hope some of this info, reintro diet?, is useful.. It's a tough treatment! I admire all who have been able to stick with it!!

Good luck!

DanHerefordshire · Mar 8, 2012

Its good to keep these drinks on repeat perscription if you can when back eating normal and feeling well 1-2 drinks a day will keep remision and let the body absorb plenty or nutriants and minrals it otherwise would not get..

Tesscorm · Mar 8, 2012

Whenever my son does end his current treatment, I'm hoping he will supplement his diet with one or two drinks! Totally agree that it can only help in maintaining remission and ensuring that nutrients are absorbed.

SarahC · Mar 9, 2012

There really are so many ways of reintroducing foods! So confused as to which way to go, but i like the sound of your son's reintroduction method Tesscorm! Fingers crossed white bread isn't my trigger food! D:

Tesscorm · Mar 9, 2012

You might also want to look up posts by Happy. She has had success with EN and followed a much slower reintro of foods. She has quite a bit of knowledge on EN and has posted quite a bit of info re reintro diets.

Good luck!

littlemissh · Mar 9, 2012

Tesscorms reintroduction diet is pretty much what I was told.

SarahD · Mar 10, 2012

My reintroduction diet is very different to the one Tesscorms posted. I'm following the LOFFLEX diet which means no diary and no wheat among other restrictions, for about 2 weeks. After that each new food has to be tested for 4 days to see whether you react to it. I guess this approach is more thorough but takes a lot longer and is more restricted. If you want more details on what is/isn't allowed on the LOFFLEX diet then just let me know.

SarahC · Mar 11, 2012

I've researched the LOFFLEX diet which is what I was initially going to start after my six weeks of the EN. The low residue diet however also seems like a good idea. Will have to discuss them with my dietitian!

Mom2oneboy · Mar 12, 2012

Tess, is Stephen staying in remission without any meds??

JamesNeve · Jun 22, 2012

I've been on the elemental diet for four days, and my symptoms, which are mostly diarrhoea, have gotten a lot worse. Diarrhoea doesn't seem like a terribly uncommon side-effect of the elemental diet, so I think I'm going to have to wait for the tests next week to tell me whether it's working or not.

My doctor is basically the only doctor who knows anything about Crohn's in the rural town of Tottori, so I'm hoping he knows what he's doing. He took some persuading to put me on the elemental diet instead of giving me prednizone, and I'm hoping to persuade him (with Dr Hunter's book's help) that lofflex is the next stage (he wants to give me more Humira, even though it's already failed to work once...)

@ SarahD: interesting to hear that you're from Cambridge too. I lived there until I moved out to Japan in August, and will probably return there eventually. Let me know if the dietician you're seeing does a good job! I much prefer the diet treatments to the idea of drugs.

SarahC · Jun 22, 2012

Hope it works out for you James.
It's tough going but worth it if it means being medication free!
How long do you have to stay on it for?

JamesNeve · Jun 22, 2012

Thanks, SarahC! Best of luck with yours, too - I hope it works out for you. I was only diagnosed six months ago, so it sounds like you've had a much longer experience with it all than I have. Would be fantastic to be able to control it all without medication.

I'm on it for a tentative three weeks, although the plan seems to be to play it by ear, and go back onto food once the inflammation has cleared. How much longer have you got left now? Have you had much relief so far?

SarahD · Jun 22, 2012

Hi James,

Elemental give me D too and it wasn't one of my symptoms before hand. It didn't go away until I started to re-introduce food. Do you have other symptoms usually, and if so do you feel they've improved at all? It's hard but don't give up hope yet. It took me a good 3 weeks to feel any real improvement, and even after 4 weeks I wasn't completely improved. The best advice I can give from my own experience with elemental & LOFFLEX is not to rush things. I was initially on elemental for 4 weeks, and even though I was still regularly getting cramps I then started LOFFLEX on my dietitians advice. I thought it was too soon but I was desparate to eat, but I eneded up having big flare and had to spend another 4 weeks on elemental. So what I'm trying to say is listen to your body and don't rush onto LOFFLEX if you don't feel ready.

Do you have a dietitian to help you through all this? Prof Hunter's book is a great help too. My dietitian in Cambridge is ok, she helped develop the LOFFLEX diet with prof Hunter so she's very knowledegable about the diet. She has promised to call me a few times between appointments to see how I'm doing and then hasn't, but apart from that she's been ok. I think Addenbrookes is one of the best places to be for IBDer's (atleast in the UK).

Just post if you have any questions or just need support etc...elemental is hard work and really tough going mentally as well as physically, just know you're not alone!

Sarah

JamesNeve · Jun 22, 2012

I get pain and fatigue during flare-ups, and those don't seem to be present, but they come and go as a part of how the disease works for me anyway (and haven't been present very much since my inpatient stay ended a few weeks ago). It's encouraging to hear that other people have also experienced D on the elemental diet, though - I guess that isn't a sign that it isn't working after all.

Sadly, I'm not sure if there are any English-speaking dieticians employed in Tottori, and I'm pretty sure there are none who know about Crohn's. The incidence rate in Japan is, I think, 2 in 100,000, which makes it hard to get help here. But I'm hoping a combination of my doctor and Prof Hunter's book will get me through the food re-introduction. How has the re-introduction process been for you? Has it gone fairly smoothly?

Addenbrookes does seem like a very good place for Crohn's. I had my colonoscopy done there at Christmas, and everyone seemed very knowledgable. The sensible thing would probably be to go back there to be treated, but I'm rather attached to my job in Japan, and I wouldn't be able to get it back if I left, so I'll be sticking it out a bit longer.

Thanks for your help!

Tesscorm · Jun 23, 2012

Hi James,

Re the D, my son did six weeks of exclusive EN. D has been one of his symptoms at diagnosis and the D continued (5-6 times per day) throughout the exclusive (formula only) period. His dietitian had warned that this is common, as she explained 'what's going in is liquid, so...'. However, all of my son's other symptoms disappeared fairly quickly and, there wasn't a problem with 'urgency'.

As soon as he reintroduced food, the D went away.

And, just FYI, you said you would be on it for 3 weeks - my understanding is that the EN must be exclusive for a longer time period approx. 6 weeks (sorry

...). Three weeks may not be enough time to bring the inflammation under control???

Good luck!!!

SarahD · Jun 23, 2012

Hi James,

It does sound like you'll need to wait for the tests then to see if you're responding. I think D is one of the more common side effects. For me I went from 1-2 BM's a day to 5-10 a day once I'd started elemental.

When I asked about you seeing a dietitian I was thinking that CD is quite rare in Asia - it must be really tough finding a doctor with the knowledge to treat you. Any chance you could travel back to the UK just to see a consultant & dietitian (combined with a holiday to sunny Cambridge? lol) or would it be too expensive? I guess the flight would be quite long too?

I wouldn't say my reintroduction has been smooth at all. The first time I was on LOFFLEX I was struggling quite a bit with symptoms the whole time (4 weeks) and ended up in a massive flare which came on very quickly. After another 4 weeks on elemental I started LOFFLEX again and have still had a lot of ups and downs. I've been on LOFFLEX for about 6 weeks this time, though was told it would only be two weeks initially. I did react to a few of the LOFFLEX 'safe' foods, but then everyone is different. I'm just about to start testing non-LOFFLEX foods next week which is a big milestone for me

Compared to how I was just before I started down the dietary route I'd say I'm 95% better and can function normally again, but I do still get some pain on a daily basis. It has been hard work, but I feel it's been worth it so far. I think Hunters book does make this all sound a lot easier than it is and he doesn't really discuss what happens if things don't quite go to plan....I guess that's one of the reasons it's useful to have a good dietitian. They will also check that your diet is adequate in terms of nutrients so that you can eat more of a particular food type or introduce supplements to fill any gaps. All that being said, I don't think you should be discouraged that you don't have a dietitian, I guess it's not impossible to do this on your own but it is really important for your doctor to ensure your diet is nutritionally adequate. Best of luck!

JamesNeve · Jun 23, 2012

@ Tesscorm: Thanks for your post. It does sound like the D is just something I'll have to put up with, although I'm glad to hear that other people have had the same issue, and it doesn't mean that I'm intolerant of the elemental feed or anything.

About the time, the dietician in England who I was in e-mail contact with for a little while (before she realised that her insurance didn't actually allow her to treat me in Japan...) said that for my level of Crohn's (which was described as 'mild' by the consultant) 3 weeks would be enough. So I'm hoping that's right? Although judging by SarahD's account, perhaps the NHS is always stingy with its elemental feed.

@ SarahD: Yeah, the doctor I'm seeing now in Japan is the fourth doctor I've tried this year. It doesn't help that the system in Japan is that they get paid based on the number of patients they see, so doctors here will often tell you they can treat you even when they have no idea just to get more patient visits. Flying back to England is sadly too expensive to see someone just once or twice (I've already done it once this year for the colonoscopy). £1000 return and about twenty four hours of travelling each way Tottori to Cambridge.

It sounds like you've had a tough time with it, although I'm glad to hear that it sounds like you're seeing some success at last. As you say, it'll probably be pretty difficult to know what to do if things don't all go by the book without a dietician. I'm really hoping that I don't react to any of the LOFFLEX foods. I'd like to say, "This is the last plan. If it's too difficult to getthe elemental->LOFFLEX diet to work with the doctor I'm seeing now, I'm coming home again". But since late March when I flared, I've had nine or ten 'last plan before I come back to England', involving six doctors and a dietician across two countries... so I'll see!

Tesscorm · Jun 23, 2012

There is another member who has quite a bit of experience with EN and reintroducing food, and I believe she did it without much assistance from a dietitian. If you search for posts by happy I'm sure you'll find lots of info.

Sadiesweeet · Aug 4, 2012

hi, i've been recently diagnosed and put on the elemental diet as my doctor doesn't want to use steroids on me as i'm only young. I'm quite enjoying the juice drinks and i have no pain or bloating what so ever but my diarrhoea is continuing! It seems i don'e need to do to the toilet as often but when i do it is small amounts of watery diarrhoea. Anyone have any ideas if the drinks are still working?

SarahD · Aug 4, 2012

Hi Sadiesweeet, I had terrible D whilst I was just on elemental, it wasn't a symptom of my Crohns before hand so it was all caused by the elemental. I got given an information sheet before I started the diet and it said to expect diarrhoea. It doesn't automatically mean that the diet isn't working, particularly if other symptoms have improved. It may be worth mentioning to your dietitian, if only to put your mind at ease.

Sarah

Sadiesweeet · Aug 4, 2012

Thanks for the re-assurance Sarah! When you think that only liquid is going in, you would assume that would come out, but yeah i will tell my doctor to see what he says. Any tips on cravings on the diet? Because i am in no pain and feel relatively normal food is driving me mad. And i still have 3-4 weeks left!

Sadie

SarahD · Aug 4, 2012

Hi Sadie,

How long are you on elemental for in total? If you're feeling well would they let you reintroduce food earlier than planned?

The cravings are horrible, I found it pretty difficult in the first couple of weeks. It does get much easier as time goes on though...I found it helpful to give myself little non-food treats - I know it doesn't really stop the cravings - but I found it helpful to replace the pleasure I'd get from food with something else. I really like baths so I treated myself to a few things from Lush, treated myself to some new nail varnish etc. They were just small things but I was saving money on food so figured I could afford to spend it on something else I could enjoy

I also tried to stay away from strong smelling foods, I didn't mind being around other people eating but if the food had a strong odour it made it really hard. I guess it's a case of finding something that works for you really. Eating is such an ingrained and natural behaviour that it's incredibly difficult not to have food.

Good luck,

Sarah

rob101 · Aug 4, 2012

Hi Sadie, When I was on the elemental diet I would drink more water when I was hungry and try to avoid being with other people when they were eating which was easy at the time as i had just had a resection and was in bed a lot.I also had a lot of diarrhea while on the diet which only stopped when I was put on Colestid sachets twice a day and stopped immediately.
Hope the diet goes well for you . Its really seemed to help me and if i have any signs of a flare I go back on it for a week and touch wood seems to do the trick.

Sadiesweeet · Aug 5, 2012

Hi Sarah- thanks for the great advice again. I'm hoping the doctor is going to say that when I see him in a weeks time. He wants me to get another CT scan before he introduces me to new foods and if that is okay then he'll go ahead. It's very hard getting a scan where I live though as its so busy and priority goes to accident and emergency patients.

As for the treating yourself thing that's a really good idea, I find relaxing and taking my mind off things in a bath therapeutic so I might invest in some bath salts too.

I'm okay being around others eating as I do have quite strong will power but the problem came when I was able to go out again and see my friends. It was a friends birthday and everything was fine until someone ordered pizza and I just had to leave. Then I went to see my boyfriends band play and the street was full of burger vans and things. I honestly felt like I was going to crack so had to leave early. I think that's the worst thing, social interaction and feeling left out!

Sadiesweeet · Aug 5, 2012

Thanks for the advice Rob. I really need to just stick it out as I know people on here have had it a lot worse and I might if I don't try this treatment. Advice like that really helps thanks

SarahD · Aug 5, 2012

I can completely relate to that Sadie! Try not to give yourself a hard time about it if you have to leave because of food, I had to keep telling myself that other people still had to eat and I couldn't blame them for doing so but its still not nice when it seems everyone around you is eating and you can't join in. Even people who know you can't eat can be a little insensitive at times.

I hope you manage to get the scan soon and can start eating again. Will you be following a special diet as you reintroduce food?

Sarah

Sadiesweeet · Aug 5, 2012

Yeah I know, I try not to blame them but I admit I do resent them a bit. If eel awful on my boyfriend as he's bending over backwards not to eat in front of me but also trying to treat me like normal. It's hard for us both.

I will be making an appointment with the dietician to discuss food re-introduction soon. Ive read on here there are a series of stage which I think my doctor mentioned. I have no idea which foods in particular are 'bad' for me yet. I'd been only eating whole rain foods before diagnosis as advised by my doctor who thought I had IBS but most people say white grains are better for crohns which I will try.

crunch · Aug 24, 2012

@JamesNeve gather incidence of crohns in Japan is rising as omega 3 levels fall as population moves more towards a western diet and away from fish - not sure what that means for us non-fish fans. Was also told that there are some good crohns experts on the north island somewhere beginning with s but I don't remember the place, sorry.

I've just finished elemental and had all your problems with D - my biggest issue was the taste, found all flavours awful, but eventually found a way that works - chill in the fridge, always make the next batch up (if powders), have a special glass you don't use for anything else i.e. not attached to, and I had third of a pint every 45 mins during the day, but never got close to the 5 jugs a day!

just started on LOFFLEX and belly not happy to have food in it again, but we'll see. Biggest problem for me there is blandness and lack of sweet things, but try anything rather than more pills (aza and mercap made me iller than crohns) or prospect of future surgery.

crunch · Aug 24, 2012

oh and another way of knowing its working is if the d is rather on the green side!! bacteria dying apparently, if the intention is to reset the bowel flora as in LOFFLEX....

JamesNeve · Aug 24, 2012

@Crunch - sadly, the prefecture I was in, Tottori, is the lowest populated prefecture in Japan, and the people who live there are mostly old people who cling very rigidly to their traditions. I'm sure you're right in general though - the more progressive areas of Japan do have a much more westernised diet. Because Japan's so long and thin, moving around is pretty difficult, though - would have taken me eleven or twelve hours by train to get to the northern island...

Anyway, the treatments they were trying over there really weren't working (except Pred, but the side-effects were horrid even for the short time I was on it), and my contract ended in August, so I ended up coming back to England rather than recontracting as I'd been planning. Hopefully Addenbrookes will have more success (I imagine I'm being supervised by the same lady you were, SarahD). I've just started a second round of Elemental Diet a few days ago - not particularly looking forward to it, but so far the D is a lot more manageable with the Elemental 028 than it was with the Japanese version. The flavours are worse, though. I miss the coffee flavour...

Best of luck with yours, crunch. Do post if you're successful in finding a diet that'll let you manage Crohn's without pills - sounds almost too good to be true...

crunch · Aug 24, 2012

shame your contract ended, but perhaps your health will benefit...

lofflex supposedly has a 95% success rate IF you can get on the diet plan, I suspect the IF is because most people struggle with no caffeine, alcohol, chocolate, takeaway etc... think it will be hard to just test a single food stuff, even spag bol is pasta meat tomatoes and other things we all throw in - all have to be safe before even trying spag bol!

hey ho - give it a try :shifty:

Diver jude · Jul 10, 2015

Hi , I am due to start an elemental diet , after failing with drugs and severe reaction to infliximab. I have cd and a recto vsginal fistula and was diagnosed last December but as yet no relief from my symptoms , so my consultant hopes this may help. Any advice or stories from others would be appreciated as feeling rather lost and overwhelmed . Many thanks :sign0085::sign0085:

happy · Jul 10, 2015

Hi Diver jude,
Sorry to hear that you are having such a difficult time right now. What is the plan for your EN? Do you know what formula you will be taking and for how long? How will you be monitored to know if it is working? Feel free to ask me any questions about EN.

Spooky1 · Jul 11, 2015

Hi, Jude,
do you know whether you will be fed by tube, or will you start with the sweetened sip feeds? The sip feeds tend to dash straight through me, and because I have had a lot of intestine removed it's a case of liquid in, liquid out, which is a shame. But others have great success on it. It can take a little while to work, but look on the bright side, at least you know your body is receiving all the nutrition it needs from those liquid feeds. That's a good start.

Good luck, and as Happy says, ask any questions. We're here to help each other when no one we know can.

Diver jude · Jul 13, 2015

Thanks spooky and happy, been in hosp last few days , but home now , nurse is dropping of my feed to start tomorrow , modulen I think , been on sip drinks last few days . Going to try to manage drinking it ,rather than NG tube , the dietician said for 6 weeks . Wish me luck x

happy · Jul 13, 2015

Diver jude,
The people in the parents' thread have lots of tips about EN--many children are on Modulen--so they may have some advice for you. http://www.crohnsforum.com/showthread.php?p=694576#post694576

I haven't tried Modulen. With my formula--VivonexPlus--mixing it up in advance and chilling it, then drinking through a straw or through a covered cup (sippy cup) worked the best for me. I also had to dilute it by half, but still drink enough of it to get my caloric and nutritional needs. I also started gradually rather than all at once. I am not sure if you can chill or dilute Modulen.

This is another thread that discusses Modulen: http://www.crohnsforum.com/showthread.php?t=32162

:goodluck:

Diver jude · Jul 15, 2015

So day five with no solid food and day 2 of the modulen, have had moments of hunger but coped , my husband is diabetic so still cooking for him is important, however I've had no bowel movements since starting , just bleeding which I think is the fistula, very bloated , tired ,and bit dizzy, is this normal ?

Spooky1 · Jul 16, 2015

I find liquid causes a bloated tum. the tiredness and dizziness is also very common with Crohns. I also bleed from a fissure. Keep at it and please keep us informed.

happy · Jul 27, 2015

Diver jude- I hope that things are going better for you now. Sometimes you need to try different formulas because you may have a sensitivity to some of the ingredients--a milk protein or sugar is often a problem. Diluting the drinks can help and drinking lots of water throughout the day. If you are still having trouble with constipation, a small dose of Miralax won't interfere with the EEN. Some people have loose stools on the formula and others get constipated. Keep in contact with your health professionals so they can help you if things aren't improving.

Diver jude · Jul 27, 2015

Hi happy, a lot can happen in a week so thankyou so much for checking in on me. A week ago I was admitted to the hospital , with severe pr bleed and pain ,overnight I haemmoraged and had 3 unit blood transfusion. Taken to theatre next day , were they had a good view of my recto vaginal fistula which they think had caused the big bleed. I was told an ileostomy was a real likelihood before I went to sleep and on waking found that is what I'd ended up with. They have put a seton stitch in place, and hope the ileostomy may give the fistula a chance to heal, as this is the 2nd haemoorrage, first was back in February, and I've been advised it would be life threatening and unsafe to have left me. I'm now home and the elemental feed has been stopped and I now have to slowly build up a normal diet. I still can't quite believe what has happened and to say I'm scared and struggling with the changes is an understatement, but I'm just glad to be alive and won't let this beat me. Xxx

happy · Jul 27, 2015

Oh goodness--what a scare that must have been for you! Thank you for letting us know that you are out of danger now. You sure have been through a lot.

Take your time getting back to your usual activities--go at the pace of your healing.

I was just watching a very interesting presentation about partial EN--perhaps that would be a good approach for you: https://www.youtube.com/embed/6EbHUYy5ePg

May you soon be feeling well. :hug:

Spooky1 · Jul 28, 2015

thanks for the you tube link, Happy.
Diver, what a surprise for you. Hope all goes well.

happy · Jul 28, 2015

No problem Spooky1--Lady Organic posted it in the the parent's section in this thread: http://www.crohnsforum.com/showthread.php?p=879365#post879365

Elemental diet: how quickly does it start to help?

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