Missing food!

[sarahjane]

I am 18 years old and I was diagnosed with Crohn's disease in 2005,
since then I've had a LOT of NG Tube's fitted for 8 weeks at a time using Modulin feed, no food at all but now I use Ensure Plus which taste a lot better and doesn't require me to have a tube.

Over the past few years I have had flair-ups about twice a year and the only way to treat them is by going on liquid diet's to give my stomach a rest! I've been on Azathioprine and Steroids in the past but neither have helped to put my crohns in remission and I had awful side-effects to the Azathioprine. Today I've started on a liquid diet and have my A2 exams next week, awful timing, but already I'm craving food :frown:

Does anyone have any advice of how to keep my mind off food? I'm so tempted to just go and make a piece of toast! :chef: :sign0085:

 

[Terriernut]

All I know is that its HELL. And you have my utmost sympathy. I will say after a time the physical cravings subside, as you probably know, but the mental cravings are another thing altogether!

Stay away from humans and all food if at all possible. Easier said than done, but thank goodness xmas is over!

 

[Angrybird]

Hello Sarahjane and welcome to the forum. I think you have done incredibly well to keep going on and off these liquid diets, they are no fun I have been on the Modulen milkshakes that you mix up yourself and for the first few days I was obsessed with food, I craved cheese, cheese and more cheese!! It is sad to say though that after a few days I became so 'full' of liquid that I just lost interest in food and even the milkshakes, I was supposed to go from having 8 a day to 10 due the weight I was losing but I struggled to down 5 or 6. Are the steroids and Aza the only meds they have ever given you and which steroids did they try? I am curious as there still a fair few of other meds they could try to get and keep you in remission, so I am wondering they they resort to the liquid diets and nothing else. I assume at some point they did the whole elemental diet thing to find out trigger foods and this just didn't work hence the NG tubes? I am pleased you have found us, there is always lots of advice and support here

 

[sarahjane]

Are the steroids and Aza the only meds they have ever given you and which steroids did they try? I am curious as there still a fair few of other meds they could try to get and keep you in remission, so I am wondering they they resort to the liquid diets and nothing else. I assume at some point they did the whole elemental diet thing to find out trigger foods and this just didn't work hence the NG tubes? I am pleased you have found us, there is always lots of advice and support here

Yes but I think they will try me on Humira later in the year if I get any worse, but for now I'm happy to go on the feeds they seem a lot simpler than medication it's just the first week that's tough! I just have my milkshakes and normal food re-introduction plans.. no food trigger stuff.

 

[Angrybird]

Cool, I am glad they have at least made you aware of the other options. How long are you expected to be on the current liquid diet for? When you do start to have food again how are you advised to do this? Do you get a set list to start of with and then expand on that?

 

[sarahjane]

Cool, I am glad they have at least made you aware of the other options. How long are you expected to be on the current liquid diet for? When you do start to have food again how are you advised to do this? Do you get a set list to start of with and then expand on that?

Yes I'm on it for four more weeks, so I'm surviving on various types of hard-boiled sweets and different flavours of non-fizzy soft drinks I think I'm the only one in my sixth form that has an excuse to eat sweets during lessons. I get a list of foods to reintroduce slowly, rice chicken potato and fish first and then dairy last

 

[Terriernut]

At least you have a plan! And you are taking charge of things. If it doesnt help, you will know what to do! All my digits are crossed that the liquid diet will do the trick for you!
:kiss:

 

[xJillx]

Hi sarahjane and welcome! I haven't been on a liquid only diet, but I imagine it must be very difficult. I think the biggest challenge must be the social aspect & food. Everything revolves around food! I sure hope these 4 weeks go by fast for you.

I think what would make me stop craving food would be that this is a much safer option to getting you into remission and feeling well. So try to keep in mind that you are doing this to get well and safely. Hang in there!!

 

[Angrybird]

Good luck hun! We do have a support forum so do not hesitate to have a good vent about the food cravings, if often helps Also please keep us informed on how you get in this time.

 

[sarahjane]

I'm just glad I waited until after christmas to start on the diet
Thankyou all for the kind words

 

[Snap]

SarahJane---you have my heartfelt sympathy---those liquid diets are awful---and the food cravings are the worst. I always hated bowel rest----of course the bowel is happy--but the heart and mind are pissed! I would occ suck on hard candy or chew gum. I would always reach the point where food was not as missed--my tummy would stop growling and I would tell myself over and over--gee all it does is hurt like hell and make you bleed and get the big D. And then I would run into somoene that I hadn't seen in a while and get my favorite greeting---"Wow you look really skinny--don't you eat?" Um, well, since you're asking..................................... SIGH. I try not to be mean, because unless you are one of "us"---you really DON'T get it! Take care of you! It will get better.:rosette1: Dana