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Craving for Food

C

colin84

Hello everyone

I am now into day 13 of the Modulen regime (no food eaten since Tuesday 24th February....)

I am really struggling today as I am craving food. I am on 40mg of Prednisolone which isn't helping. I feel so much better sicne starting the modulen - all crohns symptoms have gone but today I am desperate to eat!

Not really sure what I aim to achieve by posting on here but hoping if I type I may forget about food!

What I would give to have something different to Modulen today. Even soup would taste soooooooo good!. The thought of possibly another 6 weeks is not good! It is working so I know I must stick to it but boy am I finding it hard today!
 
DanM

DanM

Just think of all of that awful crap that is served in the school cafeteria. Would you actually want to eat that tasteless s**t??

Dan ;)
 
N

NatalieMT

I have been on Elemental E028 and Modulen since the 3rd week of January now I think, it gets easier once you get past the 2/3 week stage. The improvement in symptoms should hopefully help motivate you. I did find during the early stages I was watching a lot of cookery channels etc but really stay away from temptation if you can.

Unfortunately throughout the whole diet I have never been symptom free, some nights it was very bad, they even put my steroid dosage back up and thought about taking me back into hospital for better pain control and at the moment I'm stuck for food reintroduction because my body literally won't tolerate anything. Someone at work today commented on the fact they thought I was losing weight again.

Are you flavouring the Modulen with anything? I don't think I could drink it without but if not maybe you could ask your dietician for some of the flavour sachets, might just help make it that little bit more interesting and varied. I was told I could also use coffee syrups (I bought like Gingerbread, Cinnamon, Hazlenut and Vanilla online from a brand called Monin) and also milkshake syrups.
 
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C

colin84

Hi NatalieMT

Thanks for your post - well done on sticking to it since January! I have got over yesterdays craving which is good.

I am flavouring it with the nestle nutrition powder and also my dietician said I could add the Nestle Crusha mix to it which makes it very pallatable. I find drinking it slowly helps as when I gulped it down I had terrible diarrhea.

I have just contacted my dietican as I have lost a couple of KGs since starting to drink it and I am constantly hungry so I am wondering whether I am having enough. Waiting for her to call me back!

Hope your symptoms improve soon.
x
 
Kittee

Kittee

Wow! I've never heard of this stuff...

Does it really work to put people in remission? I was reading on their website that it has a 79% success rate!
 
ThatGuy2006

ThatGuy2006

Wow, I just read up on this stuff. It sounds pretty cool, but i read that it can be expensive and hard to get, is that true? A few weeks with no food sounds like pure torture right now considering 1) I'm trying to gain weight and 2) I'm on 35mg prednisone and weaning off but my appetite is still uncontrollable so I can understand your frustration with cravings colin84. Hell, I'm going crazy if I go two hours without food right now so I commend you and whoever else has done/is doing this! Best of luck to you!

P.S. Go with DanM's suggestion if you are having trouble lol
 
N

NatalieMT

They do use the Elemental diet as a first line treatment sometimes, instead of steroids, to help get people out of a flare and into remission yes. Although it doesn't work for everyone - I'm certainly not in remission.

The E028 cartons and the Modulen can be difficult to get hold of without having a dietician as it's a medically supervised diet. It is expensive aswell yes I hear, luckily where my parents live (Wales), so technically my home address, prescriptions are free so I didn't actually pay anything for the hundreds and hundreds of cartons I have received or the canisters of Modulen. Which is really fantastic.

Colin add ice aswell, when the drink is quite cold it's much nicer. You can also warm it up (warm not boil...) a little in the microwave. I did this with a chocolate flavoured one for that 'hot chocolate' type thing, it was a bit sickly but made me feel very full. I'm quite small though I only had 6 of the E028 cartons a day at most and sometimes I'd swap a couple of cartons for a couple of servings of Modulen. If you are losing weight though you definitely want to get that sorted.
 
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colin84

Yeah all the research shows how good it is. I live in England and qualify for free prescriptions due to my colostomy which is lucky. My flat has been taken over by the yellow cans!

Spoke to dietician today who is going to contact me tomorrow but think I need to drink more of it.

Agree Ice does help - although the taste really doesn't bother me and I actually quite like it!
 
Kittee

Kittee

Appears this is discontinued here in the states, but the Elemental diet is possible to do. Anyone have any tips on that?
 
soupdragon69

soupdragon69

ele mental leprechaun
Yep I did only Elemental 028 for 6mths from Xmas 06 (when diagnosed) through to Summer 07. You need to introduce it slowly and drink it over at least 30mins (as Colin found out when drinking his modulin too fast it can cause diahorrea due to the shift in fluids in the gut) but elemental is designed to be absorbed in the first metre of your small bowel so you get the nutrition you need AND your gut gets a rest.

They recommend you drink nothing other than hot or cold mineral water and make the powdered sachets up with it too. Although you cant have the elemental hot or even warmed up so only drinking plain hot water is not necessarily appetising but it was better than stone cold drinks all the time! Was tough through the winter but I just took it one day at a time and if needed hourly.

Originally I was supposed to be on it 2-4wks max and it kept being extended by 2wks by my GI. I tried to eat on Valantines day (as agreed) but within a few days was doubled over in pain. We went back to pure elemental until the end of March and I tried eating again and failed a week later. In the end I went into hospital that June and they worked out a really strict regime food wise (moreso than their LOFFLEX diet) and I managed to start eating again.

What kept me going each time was I would look back and see how far I had come (even if it was only a couple of days) and think about all the hard work to date and undoing it after having struggled that far and how disappointed in myself I would be.

Does that make sense? Its the main thing that kept me going because as every crohns sufferer knows you just want to be better.

My asthma and allergy consultant told me last Autumn if he had his way he would keep me on Elemental as its the best he has ever seen me!

I keep elemental at home and my GP has it on my repeat prescriptions so if I feel the need to start it OR know I havent eaten enough for a couple of days then I have it to hand. I was last on it Oct-Dec 08.

Its why I chose my logo for here as the "Ele mental leprechaun" lol I am irish, crackers and a regular on the elemental!

If I can help anyone just ask!
 
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beth

and drink it over at least 30mins (as Colin found out when drinking his modulin too fast it can cause diahorrea due to the shift in fluids in the gut)

I wonder if that's my trouble; I tend to down a carton in 10minutes. Whilst my guts have settled a bit, I've not got diarrhea, they aren't entirely normal either. :(
 
C

colin84

Beth.

Take Soupdragons advice. Last Tuesday was a bad day as I have a colostomy and the diarrhea was awful. I was gulping the stuff down and paying the consequence! Now I sip it over 45-60min period and the diarrhea has gone and I now have formed stools!

Again take soupdragons advice and take a day at a time and look back at how far you have come. Today is day 15 for me since food and I cannot believe I have come this far. I am a keen cook and love food so thought it would be impossible but I feel so much better for being on it

With regards to getting it in the states - not sure - perhaps search the internet and try and get it sent from overseas?
 
Kittee

Kittee

I would try to order it but it's 300USD a container.

I was hoping to have my DR. prescribe it so I could use my insurance to cover the fee. =(

The Elemental diet...is it like a watery liquid or more like a shake?
 
B

beth

It's... watery liquid, heavily flavoured. Needs to be chilled, as if you let it warm up it takes like sugary puke.
 
Kittee

Kittee

Hmm not sure I'd want to do that if I could help it.

I'm thinking about sticking to my Boost routine for now I suppose.

Booster, chicken noodle soup, puddings, soft stuff. etc.
 
B

beth

Well, well. Thanks Colin and Soupdragon. If I sip the Elemental in 30mins I still feel crap and guts aren't happy. If I take one sip, put the carton back in the fridge, do something for 20mins and then go back take another single sip... repeat. I get farts and little solids out the other end! Result.
So thats what I've been doing for the last two days.

Any quicker than that and I recon my guts start spasming or something and push the liquid through quickly and thus defeating the object.

When reporting what was happening and how I felt to my dietitician she told me to drink more of the stuff. She said to have 8 - 10 a day. I'm now managing 5. Which makes me think quality is the key, not quantity.
 
N

NatalieMT

Beth, I'm the same my dietitician wanted me to drink 9 cartons a day, the most I drank was 6 but I usually averaged 4 or 5 and I was okay with that. I agree it's more quality than quantity in some cases, obviously you want to look out for yourself and your nutrition but not at the cost of making yourself feel physically worse. I just felt too full and had bad nausea when I tried to drink a lot of the cartons and in the end it wasn't worth it. The Modulen gave me worse nausea however, drink that quick and you really know about it ha ha.

Congratulations on day 18 now Colin - doing well and feeling the benefits!
 
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beth

Interesting Natalie. I'm glad I'm not the only one to have trouble with it. I emailed my dietician yesterday and she said I can start gradually introducing the lofflex diet now! Hurrah. So I did. And double Hurrah for having a normal BM this morning! I still need to drink a few cartons tho to boost my vitamin/mineral counts tho.

[trying not to hijack Colin's thread]

Well done Colin. Sounds like you are doing really well. Stick with it matey!
 
N

NatalieMT

Yeah I got the LOFFLEX book, but I found it very confusing to be honest - there was more on the not allowed list! You have this to look forward to Colin! Mine came with a food and symptom diary also.

The Elemental never put me in full remission so reintroduction has been quite challenging. Most things seem disagreeable. I'm just trying to keep it plain whilst also having a few cartons as I go, like you say. Certain days I will have only cartons, if I feel it's going to be a particularly bad day for me symptom wise. I usually also only eat in the evenings, I don't feel safe eating in the daytime now when I'm out just incase.
 
B

beth

It's a low fibre and fat diet. So easy to digest, low bulk, very basic foods that seems to be tolerated by most Crohn's suffer's.

Excludes things like wheat/maize/oats, dairy, pulses, citrus fruit, pork, tomatoes, tea/coffee/alcohol. Includes things like rice, poultry/beef/fish, brocoli/cauliflower/sweet-peppers/root veg, herbal teas/ribena, jams without seeds.

It's okay, at least it's food. But you need to like rice! - which I do. You need to staick with that very basic set for a few weeks to make sure your guts are setttled and back to normal. Then you can add some other foods gradually.
 
C

colin84

I love rice so should be ok.

I am also a big meat eater whilst not really liking dairy so think I should be able to cope. What about sauces - I love chicken tonight sauces and rice - is that ok?
 
B

beth

Dont think so; the ones I just found the ingredients for have either onions, tomato, or cream in them.

Once stable on the limited diet you are allowed to test new stuff, so you may be able to re-introduce them sucessfully later.
 
M

Modulen87

Guest
Colin, How many Calories are in each scoop?
How many calories can you get in one day?
And.. How long will (1) Cannister last.
 
C

colin84

Um not sure. 3000ml of water and modulen a day is 3000calories

I have 500ml 6 times a day. I add 12 scoops of modulen to 500ml of water

I get through 1 and half cans a day so 600g
 
soupdragon69

soupdragon69

ele mental leprechaun
Guys were you not told by your team or dietitian to increase the elemental or modulin SLOWLY so you didnt have such a huge impact on the diahorrea aspect? Never mind what we have already talked about on the lines of drinking it slowly?

Colin LOFFLEX is Low Fat Low fibre Exclusion Diet.

You cant have any additives so I would think your Chicken Tonight sauces will be out. It is about basic easy to digest foods. Google it and see what you come up with.

As already said you are on it for 2-4wks then start to reintroduce other foods over something like a 4 days period for each one to see if you have any problems.

Research has found that food has a big impact on Crohns patients but not Ulcerative Colitis patients.

They have through research devised this book in conjunction with Crohns patients discussions and what foods dont/do irritate them the most.

Obviously everyone is different but it is useful as a basic starter and if you show problems with the basic plan then they can usually figure out what it is.

I remember my first "dinner" of plain chicken breast and mashed potato and I just drooled looking at it after months of elemental but at the same time I was a bit scared to eat again as I felt so safe on the drinks.

Takes a while to get used to eating, swallowing and chewing again. Hope when the time comes things go well for you.
 
C

colin84

Sorry was supposed to say that I was introduced onto Modulen slowly. I was in hospital at the time and feeling rough so not really sure how it started - I was like a Zombie. But please everyone drink it SLOWLY otherwise you will pay the consequences!!

I am seeing my consultant on Monday and have a long list of questions to ask him so will report back here on what he says. He is regarded as one of the best and is based at University College London so I'm hoping he can answer all my strange random questions!

I'll let you all know!
 
B

beth

I think the words from my dietician were "sip it dont gulp it down in one, and introduce it over 3 or 4 days". That's what I tried doing, but it still went through me. Same if I sip it over 1/2 hour. If I take a big sip or two sips every 1/2hour I still get the runs. But a single sip only each time does the trick. That to me is not slowly, that's geological time. And wont allow me to drink 8 cartons in a day.

I suspect I'm either not suited to it, or I have more inflamation further up my intestines.
 
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