Fear of Food?

Just wondering if anyone has experienced a fear of food as part of having Crohn's? My daughter is on Entecort, still having some mild belly aches, but overall seems to be helping and she is having more normal bowel movements.  But, she is still losing weight.  No matter what I give her, I just can't seem to get her to eat very much of anything so I know that she is not taking in enough calories to maintain her weight.  Could this be physchological (she's only 9)?  Or do you think that this means she's in a flare up and so is limiting her foods so she won't get pain?  Being that she's so young, I just can't know if she's being truthful with me about her attitude toward food because she herself may not even understand it. She picks at it...like a bird. Just pulling my hair out as she's getting thinner and thinner.  HELP?!

It might be worth first perhaps getting a doc to have a look at her or a bloodtest done to check for inflammation to see if she's flaring or not?

If she's only recently got out of a bad flare situation it can take a while to get the appetite up again, her stomachs probably shrunk to a teeny tiny size and she may have also simply lost the desire for food (understandable as with Crohn's your mind can often learn to associate food with pain which can be a hard mentality to shake even once you're better) if her stomach has shrunk then perhaps eating little and often would be better, like a snack every hour or so?

When I needed to gain weight after my last flare I made sure I had lots of carbs (pasta, bread, even cakes lol) and would have meal replacement shakes as a drink in between meals (I got EnShake from the doctor - much nicer then EnSure and just like a normal milkshake really nice blended and each was a whopping 600 cals!) that is of course if she can tolerate gluten and dairy (I'm not sure if EnShakes contain dairy if made up with water).

Also maybe seeing a dietician would help? I saw one back in the day when I first flared and was underweight and being threatened with tube feedings and although I can't remember much of her specific advice now I remember she had lots to say and lots of advice at the time. Perhaps keep a food diary for her too so you can be certain of her calorie intake?

 

Hi, I am so sorry to hear about your daughter. I can't imagine any of my kids to have to deal with what I am going through. It must be so hard on her and i understand how she feels. In my opinion I think it might be phycological and she is probably scared to eat because she doesn't want to feel sick. I would bring her to the doctor and have them do some blood work so they can check if there is inflamation. I have lost 50 pounds since around December/january and the doctors couldn't understand why. They are now thinking that because of the anxiety I have (being scared of everything that is happening) and maybe some depression from having to deal with this disease that it is the cause of most of my weight loss. I know when i came out of the hospital when I was first diagnosed and I found out all the foods I couldn't eat I was so scared to eat anything and that caused a big weight loss for me. Then i started getting tired of eating the same thing all the time and really don't have a appetite anymore. My husband is always telling me I need to eat and making me something but it is so hard to eat because I am so tired of the same thing. Does she seem like she might be depressed because of what she is going through? Is she able to still go out and enjoy herself? Maybe you can sit and talk with her about her feelings. I am also on entocort (since january) but it hasn't worked for me so that is good that it is working for her. Ask her doctor about putting her on Ensure, my doctor had to tell me to start drinking it and i gained a couple of pounds. I can only drink it after I eat a little though because if I don't my stomach will hurt. Your insurance might pay for it, mine does. I hope everything works out for her.

Hi there! Sorry to hear Meg is still loosing weight. Did you get the samples for Splash E028? They taste like fruit juice and pack 237 cal. per tiny carton. Cata likes them, and I am planning on supplementing with them when the total enteral nutrition is done.

You told me Meg was always picky with food. Is she still pickier? What about the foods she really likes?

I can definitely relate - I always tell people I wish I could live off of sunshine and water ... like a plant.

I am a big 'snacker'. Meals are very hard for me to do. I eat very little as well and my current weight is 108 and when I was healthy and disease free I was about 120. which isn't too bad...
It does scare me - getting "thin" and loosing weight, as when I had my surgery [colon removed] i came out of the hospital weighing 86 - my own brother barely recognized me.

I take lots of herbal supplements such as: www.newrootsherbal.com and i also do the "white foods" diet & the Ensure.

It is truly horrible that your daughter has to go through with all the awful things this disease carries with it.
I wish you the best of health for her and all of you!
Stay strong!
GOOD LUCK!!!

Ooh I can remember when I was first diagnosed even as they got my Crohns under control I was still afraid of food. I remember those days vividly even 34 years later. I have a feeling that that pain rememberance is still in her mind.

I feel for you so much :-( and it must be horrible for you to go through having a young child go through this but all I can tell you is how I feel myself.

I have such trouble with my guts and have told the doctors many times that i am much happier on no food even if it means im hungry compared to the discomfort and uselessness from being unable to get off the couch when I eat a normal amount of food. For a very long time now I have had this food shedule

get up about 9 and have a weak coffee
eat food from between 1-3pm for the first time in the day and it varies in small to large meal
5-6pm eat a small snack
10pm a cup of tea
plus i drink about 3-4 ltrs a day.

This amount of food also varies if I end up throwing up because often I have trouble keeping food down.

I have definitely become fearful of food and there are some foods that I don't feel hunger from even if I am absolutely starving because of the psychological factors knowing how it will make me feel.

Also my mum ALWAYS tells me now that i have a fussy toddler (to runb it in) how frustrating I was as a child because I never ate and would push food around my plate until I was about 18 (they say I lived on thin air) so i can imagine a combination of the two (crohn's and being a child) is so frustrating for you. When I was very ill and losing lots of weight i used to eat whatever I felt like and most days I couldn't eat anything without causing a flare-up except Macdonald's french fries so I would eat them everyday nearly, and although it wasn't the healthiest choice it was food...and sometimes when crohnies are flaring we eat the same thing everyday because it feels safe and we go with what we know.

Good luck and let us know how you go. your family will be in my prayers.

I think it is important to get to the bottom of this but also when I was younger I used to not eat because I was afraid of the D. Nothing in, Nothing out. I have heard other folks with this same M.O.

I eat a lot now though and have for the last few years.