Hey Conker,
I was on Elemental 028 Extra from Xmas 06 til June 07. Tried Feb 14th 07 to eat and again 25th March (my birthday) 07 to eat (which I managed for a week). Both times ended up with abdo pain so bad I was doubled over.
In the end I managed to eat in June 07. The gastro dietitian worked out a very specific eating plan for me based on my food intolerances which have been proven to either trigger my asthma, skin or gut or all three. Most folk only do 2-8wks on these kind of drinks and the research shows up to 80% go into remission with their crohns. I chose it as a treatment instead of steroids or antibiotics long term initially.
Started out with very bland food. Can remember eating a breast of chicken and some mashed potato as a first meal that June. Was drooling just looking at it. However having not eaten for such a long time it was a very weird sensation actually having food in my mouth again and I actually got jaw ache from chewing! LOL There is a specific diet called LOFFLEX that is used post these drinks - you can google it - to help reintroduce food that is least likely to cause problems and the research is good for this too.
Also became full VERY fast. Had to stay on the drinks for several weeks until I was eating enough. Then it was discovered that if you have been on elemental (dont know if the same applies to modulen) that you should stay on the drinks for a year as a supplement to your diet to ensure you are getting all the minerals and vits you need in case your gut mucosa flares again with food and you dont absorb so well again as a result. Does that make sense?
Now I keep elemental at home at all times. It has been agreed with my gastro dietitian and gastro consultant that I go onto my elemental drinks any time my gut flares for a minimum of a month. I am happy to do this as I "feel safe" and much better when on them. My asthma/allergy consultant told me the best he ever saw me health wise was when I was on the elemental for those 6/7 mths and if he had his way I would be on them for life. I told him to set the example and I would follow suit!!
Modulen works a different way to elemental and I think there is also caesin (sp?) in it too (could be wrong).
I, like you, was told similar things but at the end of the day it comes down to how much you want improvement in your quality of life doesnt it? I went through phases - sometimes each day, sometimes for over a week - where I would almost obsess about a specific food etc. Became obsessed with food programmes yet found when food was put in front of me I didnt want it. Caught myself watching folk eat around me too.
Thing is conker - as hard as this sounds - there is only you who can decide whether to continue or not. My dietitian told me once that the whole dietitian team decided to do elemental for a week so they could understand what their patients go through. They all had given in by the end of the first day!!
My comment to her was that the reason they all gave in was because they didnt have crohns and a c*ap quality of life and desperate for things to change! She agreed but also said they are amazed at how patients cope.
It is tough conker there is no doubt about it. The only thing you can do is take it hour by hour if necessary. Perhaps look at other flavours? Maybe look at changing to elemental if you think its worth a go? Ask for a nasogastric tube through your nose down into your stomach so you dont have to drink it (which some folk find easier to cope with)?
If I can help in any way feel free to PM me or post here ok?
Thinking of you ((hugs))
P.S You will see my logo is Ele mental Leprechaun - I am irish, crackers and have elemental drinks as my safety net! LOL ;-)
