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Elemental?

Oh yeah all my cartons arrived today, how exciting for me. Dietician thinks this is the best thing for me right now. They wanted a feeding tube but I insisted I will drink it. I take nutrition seriously but not necessarily my weight, being very small I am fine with really, but they're not happy with my BMI. I have the Elemental 028 ready made cartons in Grapefruit, Summer Fruits and Orange/Pineapple. I am yet to sample. Anyone want to give me any prior warnings ha ha?

Any advice really appreciated this is very new to me, this whole thing. I've just come out of 10 days of being in hospital, I went very quickly downhill got admitted, ended up with about 9 drips in me and on the emergency theatre list. Gastro pretty much definitely thinks it's Crohn's after colonoscopy and CT scan and emotionally I'm all over the place. I expected this diagnosis but actually getting it well that's suddenly a different matter. They want me to return in 4 weeks for an ultrasound (CT scan showed cysts...) and then 2 weeks after that again for a repeat colonoscopy with biopsies and endoscopy. I have started a lot of new medications in the mean time and I guess I'm still adjusting. Long road ahead, support from the experienced required.

Thanks all. Xxx
 

My Butt Hurts

Squeals-a-lot!
Hi Natalie - I don't have any experience with this, but I believe it did wonders for Soupdragon when she was on them. (If she doesn't pop on this thread I'm sure she wouldn't mind you PMing her. She is VERY helpful). I just wanted to say good luck with the elemental drinks - let us know how you do on them!
 

mikeyarmo

Co-Founder
I have being sent from the hospital on a Boost/Ensure diet, but not what you have. I think my uncle had to take that though.. he found it better when it was really cold and when he drank it with a straw. I hope that what you are taking is what he took and that this is helpful.
 
not any experience with the elemental diet yet, but im interested in how it goes! the idea has been tossed around for me in a few doc visits.

good luck!
 

soupdragon69

ele mental leprechaun
Yep am the ele mental leprechaun - irish and use elemental as and when I need to now. Did from Xmas 06 to July 07 on elemental drinks so ask away LOL

As MBH says will help you where I can ok?

Here in the UK ALOT of research has been done into nutritional support for Crohns patients and my hospital were involved in the original trials and found that 80% go into remission with 2-4wks of elemental. The next problem is keeping us there!

I liked the orange and pineapple, and grapefruit cartons but managed to sicken myself with the latter and dont think I will ever look ANY type of grapefruit in the face again ;-) Cartons stone cold from the fridge are best although I had a work colleague who could only drink them at room temp YUCK! You can also freeze the cartons and have them like a sorbet if you get a bit fed up.

You can also get it in sachets (100g) that you make up with cold water. Out of them I love the orange, citrus and there is an unflavoured one that you get tiny flavour sachets for which I love the lemon and lime.

You need to build up gradually to the required amount per day Natalie or it can contribute to diahorrea because of the shifting in fluid levels in your body and needing to drink more fluids (water) to compensate. Also sip it over a period of about half an hour dont gulp it down as it settles better and is absorbed better.

Have you been told what you can drink apart from the elemental? Some places allow decafe coffee and tea whereas mine was strictly as per the manufacturer which is hot and cold mineral water only. Let me know.

I tended to use the sachets at home mostly and then at work the cartons as it saves valuable break time. I keep a drawerful of sachets at home and have them on repeat prescription with my GP now so I can use them any time I feel unable to eat enough.

ELEMENTAL IS SPECIFICALLY DESIGNED FOR CROHNS PATIENTS UNLIKE ENSURE OR ANY OTHER SUPPLEMENT!

It originally was designed for astronauts to be absorbed in the first metre of the small bowel so they got all the nutrition they needed without passing alot of waste from the other end!

The website for the company, that is very good too as they have updated it recently is www.shs-nutrition.com to help you get your head round things.

It is very useful if you have alot of support from those that either have been through elemental themselves or dietitians.

I found the first 4 days the roughest in general and once I got past that felt so much better. I am under several consultants and some have said that the best they have ever seen me was on elemental and they would rather I was on it for life!

Point is we have to be able to eat at some point and its not til you do elemental you realise how "sociable" eating and making food is! It was really weird because I became almost obsessed with food programmes on TV and recipe books too yet I wasnt that bothered about actually EATING it LOL

If you think I can help in any way - yes as MBH says do PM me. Will do whatever I can to support you Natalie ok?

Thinking of you honey. One step at a time!

((hugs))
 
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Thanks everyone, especially soupdragon, your experience and knowledge is very useful indeed! I put the cartons in the fridge last night and had one this morning, it was summer fruits. It so hard to describe the taste, it does taste pre-digested and like the flavouring is trying to make up for that. Texture is odd, almost milky but just plain weird. Not as bad as I thought it was going to be though I will admit. made me feel really quite full too. The freezer idea is a good one too. Maybe I'll pop one in see how it goes.

My dietician did say that this is often a first line treatment along with steroids to control a flare up and calm it, she told me to look at it as part of my medical treatment as opposed to a diet. I guess in that light it's easier for me to want to do it and stick with it. She's away until Friday but it seems like she will always be on the end of the phone if I need anything, she even said I could leave messages whilst she was away and she'd get back to me. Can't ask for more than that I suppose, which is nice.

They have also ordered me something I think they said was called 'modulin' I'm really not sure. I think that must be the sachets you make up because the flavourings were also mentioned there. I took a look at the website but couldn't find anything under that name. I'd like to try it though when it comes in too, sounds like it'd make the whole thing a bit more interesting. Until Friday I'm just supposed to be having a trial, then on Monday I will start properly for 4-6 weeks I think they said. I'm only allowed to drink water along with it, no teas etc. Then after that they will gradually reintroduce things like potatoes for example and see what effect it has, then go onto something else. I'm trying to be upbeat and positive about it, because it's not forever.

The social side of it does suck a bit though, guess I won't be going out to dinner with anyone anytime soon ha ha. I'll have to try and compensate by doing things with friends that doesn't involve food. I know what you mean, I'm always watching the Sky food channels it's scary!

I will let everyone know how I go and if I do need anything thankyou soupdragon I know you're only a PM away which is comforting.
 
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soupdragon69

ele mental leprechaun
Hey Natalie,

Yes it is an odd taste isnt it? Your dietitian sounds great and thats EXACTLY what you need. She is right about looking at it from the medical treatment perspective and not from the food perspective.

I found I went through various emotions whilst on them as its very odd not eating BUT at the same time you almost have a feeling of being very "safe" because you start to feel so much better.

One of the things I did when on them totally Natalie was treat myself to things like some new clothes or books etc as I was saving a fortune on food LOL If you have a family you may not notice it as much I guess but do treat yourself from time to time. Even with a pamper session for instance.. and like you say finding other things to do with your friends. Although I will say that I just used to take my cartons or sachets anywhere and have my "drinkies" when they were eating.

Modulin is a different type of supplementary feed and not made by the same company that makes elemental 028. Sounds like she is creating a back up plan in case you dont like or cant cope with the elemental. It is broken down like elemental but in a different way from what I remember. It is used just like elemental as a complete replacement.

Elemental itself does come in sachets. Sometimes boxes of 10 sachets are a heck of alot easier to carry than a "block" of 18 cartons too!

The hardest thing at this time of year Natalie can be the fact that absolutely everything you have is stone cold except for any hot water you drink. BUT I found I felt so much better in myself I didnt care about that aspect so much and was able to work through it.

There is a diet plan for Crohns patients devised by the same research teams that tested the elemental 028. It is called the LOFFLEX diet. Means Low Fat, Fibre and exclusion diet - something along those lines.. Its based on specific foods they have found dont generally irritate crohns patients and are easy to digest. Then after so many weeks you start to re introduce other foods gradually. You can google it if interested.

As I said will help anyway I can via PM or thread so just shout ok?

Thinking of you.
 
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It's a totally indescribable taste, I made my family try some just so they know what it's going to be like. Again they said it wasn't as bad as they might have thought. I tried freezing a grapefruit one and eating it that way, took longer and was more 'satisfying' so to speak. Had fun getting the frozen block out of the carton though ha ha!

I can relate to the safe feeling over not eating - I think I will feel encouraged by the thought that putting this drink into me isn't going to make me worse. Which is what I fear everytime I open the fridge. I just stare, I want something but the confusion over what to have is too much.

The modulin still isn't in so I can't comment on that as yet, my dietician was going to let me add flavourings to that, the milkshake type ones, so I don't know I might find that a bit more interesting. I'm not sure whether it's possible for me to do this diet using both types for example have 4 cartons of elemental and 2 servings of the modulin? My dietitician is away until tomorrow so I can't ask her any questions at the moment. She was going to leave me her mobile but forgot...

I will have a look at the LOFFLEX, thankyou. Anything that will help long term interests me. I'm so sick of feeling this way and being in this pain. Got another outpatient appointment in the mail today with gastro. 22nd January I presume to discuss progress and the repeat colonoscopy/endoscopy.
 
My dietition mntioned this when I was in hospital recently after my Ileostomy.
They checked all my bloods following the op and my weight and they decided not to proceed.

She did give me one to taste, but I'm rather sqeemish about new things and will only take it if I have to. So I didn't bother trying to taste it....!!!
 

soupdragon69

ele mental leprechaun
My dietitian told me that her whole team decided to try elemental so they would know what patients were going through being on it.

She lasted 2 days, most of the others gave up part way through the first! Not one of them was on elemental by day 3 LOL

I appreciated the fact that they TRIED. But pointed out to her that unless you are in the position we are in you just wouldnt stick to it. That feeling as you say of looking for food in the fridge etc and walking away because you are so worried or know you will pay if you eat it unique.

Would have like to have seen you wrestling with that frozen carton ;-) It was the Sister in charge of the gastro ward that gave me that tip!

Will be interested to hear what you think of the Modulin Natalie.

Your dietitian may or may not go for the LOFFLEX but at least it gives you some idea of a reasonable option out there specifically for Crohns patients that has had some success. I do have a LOFFLEX book (its pocket sized) so if you have any questions just shout ok?

How are you getting on with drinking enough water and any weakness or dizzyness? It can make you feel pretty drained the first few days but trust me you will pick up if you are! Meantime rest when you need to and pace yourself!

Dan,

What you dont try you dont know LOL I was warey of trying it but what helped was knowing it was going to be absorbed (its absorbed in the first metre of your small bowel) and help me get better and I was so desperate for that!

Also the fact that astronauts had tried it originally appealed to me - I was in good company! LOL
 
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I think I'll be able to do it, I have a lot of willpower when I want to. I think the thought of feeling better will also fuel me to want to go on. My Mum says she'll do the almost bribe thing where I'll be okay to spend some money on 'me time' as opposed to food. There is only 1 night when I think temptation will get in the way and that's this massive party I've been invited to and I don't know how I'm going to not drink. My dietitician will probably hate on me for this but I'm going to ask her should I not be able to stay away what would be the best/worst thing to drink and what the consequences would be.

Ah yeah the carton, I had to get scissors on it then it was in the microwave and everything!

Rang the dietiticians office today, still no Modulin. My dietitician was supposed to ring me back but didn't so I guess I'm going to hold off until Monday starting properly with the diet. It's slightly frustrating really. I would say I have a problem drinking enough water in general, I'll have to try harder with this. I guess if I don't have an option of another drink though water it will be. I have the weak/dizzy feeling a lot, but I've always put that down to not eating in the past and being depleted right now in pretty much every way.
 
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soupdragon69

ele mental leprechaun
Am sure the dietitian will get on to you next week Natalie. They have horrendous workloads.

I phoned mine last Monday to discover she is no longer part of the gastro team and they said they would get someone to ring me - it has yet to happen!

On the alcohol side of things keep in mind you have NO solid food to help absorb it so you would end up very drunk very fast is my thought!

It is also liable to "burn" your stomach because its empty AND also have a big impact on the rest of your gut too.

I had one night out (before being diagnosed) where I had the worst diahorrea of my life due to having ONE pint whilst out with friends. Thankfully I dont really like the taste of alcohol so its not a problem for me to stay away when out. I also tend to drive when I go out so if I dont feel too good I can leave with no fuss.

Also if you are already weak and dizzy then alcohol will compound that.

At least if you ask her you will have her own thoughts. Those are mine as you know ;-)

One thing you will find though is as you progress and get settled onto the elemental your energy should pick up and you will start to feel better in "yourself" if that makes sense.

Hang in there Natalie. You know where to find me honey.

((hugs))
 
I can imagine she will call at somepoint during next week yeah, she seems to not have a lot to do though ha ha. She visited me atleast 4/5 times during my 10 days inpatient. Maybe that's a normal amount though I'm not sure, but given my history (eating disorders...) maybe it was also caution. Like I've mentioned elsewhere they did get a psych referral on me again whilst I was inpatient also. I think they think I'll cheat calorie wise with the elemental and skip some or something. Or I'll go back into exercise hypermode.

I'm not really a heavy drinker, I'd be happy just having one drink. That'd satisfy me enough to see me through the night. I was thinking a single vodka, in still mineral water with a little Crusha milkshake flavouring to help the taste would possibly be the least harmful thing. Wouldn't want anything fizzy or really sugar filled, things like that have set off the burning feeling before down my throat. G&T was alright though! I will consult her over it still, not looking forward to bringing it up. I know really I should be strong enough to just say no on one night but I'm scared it won't happen.

Will update when I know more about what's going on and when I'm properly starting this. Soon I hope!
 

soupdragon69

ele mental leprechaun
Hang in there Natalie, things WILL improve.

I read your comments on the other thread about the psyche referral. Remember each and every one of us has "demons" we live and cope and face each day.

Its harder with food because unlike anything else we could give up and just go away from we need food to survive.

I have another friend who has lived with anorexia most of her life and now recognises that alot of her eating issues come from the fact that she was actually either allergic or intolerant of a food and she has Crohns, Coeliac, IBS AND down in her lactose on top of it all.

She is working hard at things and has taken the view of "replenishing" her body with vital lost nutrients so she can achieve goals like sitting up in a chair and standing and walking again. She works with her "counsellor" to view it also as building muscle again to achieve her goals and fights each day to overcome her fears of gaining fat and feeling fat.

So yes I understand where you are coming from. ...

Vodka is pure alcohol Natalie and watered down or not really isnt the greatest thing to drink thinking of your stomach lining and gut trying to recover and heal. But yes go ahead and talk to your dietitian - that is what she is there for, to help you figure things out and progress in a way that suits YOU!

Funny isnt it how you can be so strong with food and yet feel weak over the one drink isnt it? Just shows how different things affect us individually doesnt it?

You know where I am.. thinking of you.. ((hugs))
 
Spoke to dietitician a couple of times today, she said she's still trying to get this Modulin rep to send samples etc and will try and chase him up ha ha! Have decided to do a mix of both cartons (more convinient when out) and the Modulin regardless, just for variety. So I believe the prescription for the Elemental cartons was sent to my GP today and they all should be there for me to pick up later in the week. However I'll be starting tomorrow because they have some leftover cartons in storage at their office that I can have to tide me over until then.

Will be starting with 6 cartons daily, maybe building up from there. She did say 8/9 cartons but I said there was no way mentally I could tolerate the thought of that amount. That'd be almost 2000 calories and maybe it's sad when I say this but I maybe haven't had a day where I've had 2000 and had them all stay in me for about 6 years. I mean I feel fat now too and my clothes hang off me and my BMI is less than 18. Can only drink water for the first week, see how it goes then maybe the next week I can add in herbal teas. Looking at being on Elemental purely for minimum 3 weeks before reintroduction of food.

Yeah it's weird with the drink thing, because I've never been a food person it's easy for me to not want to eat, say no/pass on food. But because drinking is a more social thing for me I feel that's what I will miss out on, even though I hardly go out. I'll just have to see how it goes on that one, when it comes down to it I might feel like I don't want a drink but I won't know until the situation arises I suppose. It's more difficult however when you know those around you are going out to drink and stuff, maybe slightly more pressure to join in and get carried away.
 
Ended up in the hospital again yesterday, discharged myself in the end because my gastro never showed up to see me and I didn't fancy staying the night. Just decided to take me and my pain home. They'd given me stat doses of morphine whilst waiting for the gastro to come for continuity of care and because they have told me to avoid opiods as they slow the bowel, it could eventually rupture.

First 'official' day of Elemental today, have cheated ever so slightly ate a few small crackers this morning which I feel quite bad about to be honest! Have had 3 cartons so far, one of each flavour, another 3 to go I guess. I feel very very tired and just miserable, don't think it's the diet more just me, but not hungry at all. Have decided against the Modulin - definitely not a drink I can stomach, lumpy, the flavouring made it curdle, I couldn't even finish the one serving I made up!

Dietitician did also say today I could drink tea, hoorah. But with my soy milk, which is perfect. I did ask her about alcohol and she said 'not advisable' which I expected but she did also add she couldn't stop me and didn't know how much it'd effect the treatment results.
 

soupdragon69

ele mental leprechaun
Why crackers Natalie?? What good are they doing you? I know it is very hard to NOT eat at all but keep in mind your elemental is providing you with ALL the nutrition you need and you get maximum benefit from it for your body to recover and repair!

As I said to you earlier alcohol in ANY format is not a good idea whilst on elemental and it isnt good for the lining of your gut either but its totally up to you as your dietitian has said..

Sorry you ended up in hospital again but if you go its wise to stay and get the treatment you originally went for. Keep in mind that your consultant may have had to deal with someone in worse position than you and may have turned up after you left or planned to go see you the next morning...

Anyway, you are home and hopefully picking up a little. Take it one day at a time.

Thinking of you..
 
I just think it was the action of actually chewing on something that I was missing. Not food itself. Won't be cheating at all tomorrow though or from now on because it's not worth it and not what I should be doing. I did make up the Modulin in a blender today though and it worked much much better, so I might supplement a little with that too if I fancy a glass now and again, it was more like a milkshake this time, than the utter disgustingness that it previously was.

The hospital were happy to keep me in, they did all their bloods and stuff but being on a ward makes me feel very unsettled and I don't sleep well. I thought I'd just be better off at home. On a brighter note getting an ultrasound and seeing my gastro in clinic tomorrow.

I really don't know what happened with him not showing. They caught him after he finished meetings at 1.30pm and he said he had a list until 5pm and he'd come then. At about 5.45pm one of the registrars went looking for him and was told he'd just finished scoping but that no one knew where he'd got to. He wasn't answering on any of his numbers, so there wasn't a lot anyone could do. I was still at the hospital until 7pm or so and they did say to me then that he wouldn't be coming and they assumed he'd left for the night. It was frustrating at the time but I'm alright with it now. These things can't be helped I suppose!
 
Well, will have been doing the Elemental thing for a whole week on Wednesday and I have to say it's been a lot easier than I originally thought it would. After the first day, temptation to have anything other than the drinks was gone. I'm having the 028 cartons and the Modulin and the variety is okay really, because there are quite a few syrups my dietitician said I could flavour the Modulin with so I have chocolate, banana, strawberry, hazlenut and vanilla so far, with gingerbread and cinnamon on the way! Makes for a happy-ish me.

I feel like I have more energy at the moment which is nice, I still get very tired don't get me wrong but this afternoon I took a bus to town with my sister and was walking a good couple of hours whilst out and about. Which I might not have done in previous weeks. Still in a lot of pain and taking Tramadol (along with my host of other medication!) but the dietitician rang today and said perhaps after week 2 the pain should be easier. Went for TPMT blood test today aswell, hope to start azathioprine so fingers crossed I have the enzyme and can get going with that too.

If anyone asked me right now if I was glad I decided to start on the Elemental though, then yes I am because I can see positives already and am hoping that continues.
 
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