Hi Vickyoddsocks,
I have been on elemental since Xmas 06. Tried the LOFFLEX Feb 07 and failed after a week. Back on full elemental 2 weeks, then did really strict food intro of ONE food every 4TH day and lasted 2 weeks. Back on full elemental again. Since Xmas 06 until July 07 I had ONE day without ANY elemental. When trying to reintroduce I have reduced but not quit elemental and still use it now every day.
My gastro team and dietitian think I will need to remain on a combo of food and elemental to manage effectively. One of the problems with elemental is you may not get all your protein requirements met and it can compound your exhaustion.
What you say about ending up in pain and having D are VERY familiar. It wasnt until I was admitted in May for 2.5wks that they realised I had IBS on top of the Crohns and the antispasmodics combined with tweaking the elemental and food seem to be helping me. They would come and stand at the foot of my bed and say "why are you not improving faster? one day you run 10-12 times the next 2 the next 7 the next 5". It turned out with the IBS and new stricture discovery in my ileum my gut was speeding up in some areas and holding things up in others if that makes sense?
The LOFFLEX is workable and I am on it now about a month in total and feeling better overall. It is such a pleasure to eat again but sometimes I look at food and think how weird it feels to eat again too!! You get so used to mixing up a drink or grabbing a carton and no effort to "make or cook" without doing the dishes after too!!
The joys of obsessing about what you fancy to eat I found short lived if I actually put it in front of me, thinking I would give in and just have it. It seemed once faced with it I just couldnt eat it - partly because I didnt want the consequences, partly that I would let myself down after all my hard work to help heal my gut and especially as I had nothing but elemental for 8 wks straight off rather than the planned 2-3 with my GI cons just asking me to do another 1-2wks each time he saw me. I also felt there was no point me going and asking for help if I wasnt prepared to do 50% of the work. By the time I worked through all those thoughts I didnt want the food any more. Probably bored myself to sleep so I forgot about it!!
On a more practical note I would tend to drink room temp water rather than cold as it could trigger spasms when my gut was so sensitive. It also helped to deal with any hunger pangs. Also found I got jaw ache from chewing when I started eating again so take it slowly! There were also days I worked on a new recipe book based on favourite recipes and new ones with ingredients I knew I would eventually be able to use and some with foods I knew I had to retest. It gave me something to look forward to and also meant I wouldnt get bored with more limited choices. Folk sometimes see LOFFLEX as so restrictive they forget that there are still something like 16 other flours you can try that arent wheat, gluten based for instance.
Feel free to PM me anytime. It is a daily battle but its also a winable one too Vicky. You will get there. Hope my ramblings have helped a bit. Sorry it was a bit long winded!
Thinking of you.
Jan
