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Regular Member

Date Joined Sep 2009
Total Posts : 212
   Posted 11/11/2009 10:19 AM (GMT -7)   
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 a bird. Just pulling my hair out as she's getting thinner and thinner.  HELP?!

  • Zanne
    Veteran Member

    Date Joined Apr 2005
    Total Posts : 3763
       Posted 11/11/2009 10:46 AM (GMT -7)   
    Its really hard to tell. I know that when I have been sick for long periods of time and doing my "white food" diet (custard, pudding, rice, fish, chicken, mashed potato....) I get tired of the same flavors and textures and seem to never be hungry. I tend to only eat because my family is eating, but left to my own devices I don't think I would eat at all. It is hard to force yourself to eat when you are tired of the same old same old, and also when you are afraid that every bite might mean that you will pay for it later.

    Has she had any lab work done lately that might indicate how things are doing? Can you try to change things up a bit flavor wise so that she is getting things that might peak her interest a bit? Maybe invite one of her friends over for dinner and see if she eats more while her mind isn't paying attention to what she is doing? These things might give you a few clues to work with or at least some idea what avenue to follow.

    CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
    Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

    Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

    Regular Member

    Date Joined Dec 2007
    Total Posts : 414
       Posted 11/11/2009 10:46 AM (GMT -7)   
    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?

    Regular Member

    Date Joined Jun 2009
    Total Posts : 354
       Posted 11/11/2009 10:54 AM (GMT -7)   
    Hi there!! i am so sorry to hear your poor daughter as to deal with this at such a young age, poor thing!!!! my heart goes out to her and your family.

    I am very afraid of food. My normal weight is 110 and I can't get over 100lbs anymore. EVen though my crohn's is in remission it's definitely in the brain. But being afraid of food happened after being sick for so many years. It is possible she can be going through a flare right now and just worried about eat anything to cause the pain to flare.
    I am sure as a parent you want to feed her right foods/healthy. But maybe try to start her with plane chips (always works for me, and I'm not a junk eater) popcorn without butter was another easy thing for me to eat and not stress cause I knew this wouldn't hurt (never did)
    Plain chicken breast, but just give her a few bites. She'll probably come back in a few hours and ask for a few more bites.. this is a really good way to start yourself on food and to open the stomach a bit, help digest easier too. When you have a hard time to digest you just don't want to bother eating, but if you eat a few bits, where your not even half full it helps make it easier to get it throw.

    I hope I explain some of this right. I'm sure other people will suggest things as well.
    Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
    on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
    Pantasa 8 tabs a day
    Provacede 1 daily for the ulcer's
    Imuran 1 and half tabs (50mg)
    Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
    Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.

    Regular Member

    Date Joined Nov 2009
    Total Posts : 26
       Posted 11/11/2009 1:19 PM (GMT -7)   
    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.

    Regular Member

    Date Joined Apr 2009
    Total Posts : 55
       Posted 11/11/2009 1:37 PM (GMT -7)   
    I know for me it is more of a fear to eat. What don't go in can't come out. My daughter told me "Food is not your friend"

    Regular Member

    Date Joined Sep 2009
    Total Posts : 54
       Posted 11/11/2009 1:41 PM (GMT -7)   
    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?
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone (tapering off)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Total enteral nutrition with Peptamen Jr and Vital Jr.

    Regular Member

    Date Joined Sep 2009
    Total Posts : 212
       Posted 11/11/2009 1:44 PM (GMT -7)   
    Thanks everyone, for your support and suggestions.  I do think, after talking to her about it a bit more, that it may be in her head more than her stomach at this point. Her last set of bloodwork showed only a tiny bit of inflammation, thus the Entecort which does seem to be helping and that was all within the last month.  She admitted today that she thinks about it too much and so she worries about food hurting.  I do notice that when she is off playing with her friends she seems fine, happy, normal so I guess I need to work on harping about it less and making her feel more normal. Soooo hard to do when I see her getting thinner and since she's so young I worry about her having stunted growth.  I just bought her some Ensure today, to try and get extra calories in her. She doesn't love the stuff, but while tolerate it in small amounts.

  • Sofee
    Regular Member

    Date Joined Sep 2009
    Total Posts : 90
       Posted 11/12/2009 12:58 AM (GMT -7)   
    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: 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!!!
    praying for a good night's sleep and a happy bottom!! :o]
    1998: Colitis - removal of colon, temp. ostomy 10 mths.
    2000-07: disease free & doing well with j pouch.
    2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.

    New Member

    Date Joined Nov 2009
    Total Posts : 1
       Posted 11/21/2009 7:47 AM (GMT -7)   
    Hi, I've never used a blog before but I read yours about 6mp or mercaptopurine and your 9 year old daughter. I'm 49 years old and have had Crohn's since I was 18, for the first 14 years after, I was extremely sick Hospitalized many times eventually removing almost 3 feet of intestine with it reoccurring, not long after, been on huge amount of drugs, unable to eat much of anything besides baby food. Finally they put me on MERCAPTOPURINE MY LIFE SAVER it took three months to work but I was normal again. I've been on it for almost 17 years no side effects I eat anything I want, my friends no longer call me boney and I have lots of hair with NO signs of my of my crohns disease. I do hear it does'nt work for everyone but if her doctor suggests it I would go for it, I only wishI found years sooner, horrible memories .

    Elite Member

    Date Joined Apr 2005
    Total Posts : 14995
       Posted 11/21/2009 8:07 AM (GMT -7)   
    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.
    Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
    Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
    It's scary when you start making the same noises As your coffee maker.
    *Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

    Regular Member

    Date Joined Aug 2009
    Total Posts : 90
       Posted 11/21/2009 11:46 AM (GMT -7)   
    I'm so sorry to hear that she is afraid of food, it happened to me too and slowly it does come back. A craving for something weird like Oreos (for me anyways) will bring her back slowly but surely. Always love bananas :) She will come back around. Im still not putting any weight back on, idk how long thats going to take but at least not losing it as fast. **Prayers and hugs to you and your daughter**
    24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
    "It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin

    Regular Member

    Date Joined Jan 2009
    Total Posts : 76
       Posted 11/22/2009 6:28 AM (GMT -7)   
    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.
    Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
    currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
    Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.

    New Member

    Date Joined Dec 2009
    Total Posts : 2
       Posted 12/7/2009 6:41 PM (GMT -7)   
    If she dont eat did you try maybe giving her some ensure or carnation breakfast shakes tastes pretty good if you put the vanilla kind in with some ice cream. make a milkshake. maybe she wont enen notice the carnation in it. I wanted to gain some weight so I drank those 3x a day with all my meals helped alot.

    Veteran Member

    Date Joined Oct 2009
    Total Posts : 1070
       Posted 12/7/2009 7:25 PM (GMT -7)   
    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.
    I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
    I can't make money on this, it's already in your kitchen.  I just want to help.
    I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 

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