Is to total lack of appetite normal?

Hey, I was wondering if anyone else has problems with their appetite. I finally am in remission (according to blood tests) after 4 years of hell. I still have all my parts, though I think they don't work as well as they used too. I am a lover of food, so this situation is very disturbing to me. Anyway, I have lost about 40lbs over the course of 10 months due to a lack of appetite. I was only consuming about 800-1200 calories a day for awhile because I just wasn't hungry and/or I knew that if I ate, I would feel uncomfortable. (It isn't a matter of pain, just a feeling of being really bloated and backed up.) Around Jan. I noticed that my breasts were almost non-existent due to the weightloss and it began to scare me so I started to force myself to eat more. I managed to gain 3lbs and maintain my weight ever since, however I am starting to have problems again. I just don't get hungry. Anybody else have this problem? I heard that Crohn's people can become anorexic, anyone have experience with this? I have already talked to my doctor and he says that I have no active inflammation and that I am physically well.

I lose my appetite when I am in a flare. I force myself to eat, but nothing tastes good.
Welcome to the forum by the way.

im wondering if you have no inflammation then why do you get a bloated/backed up feeling after eating? that might be a good question to ask and try and figure out. just thinking out loud.

but to answer your question, yes yes yes i struggle with appetie and weight too. and for the most part its a problem only when im flaring (which is often). but when im feeling pretty good, i LOVE food and eat all the time!
i also know what you mean about not wanting to eat not due to pain but just that weird uncomfortable feeling. thats not true for me at the moment, but i go through periods where my tummy just does not want food, and i will try to force it in and just get bloated and burpy after not even eating much.
i am not really sure what to suggest, like i said my appetite always improves when my crohns does. so im not sure what its like to nto be hungry even when feeling decent. it sounds like you do not really have a negative body image or anything

it sounds to me, just my opinion, that you dont have anorexia. you said that you are worried about your weight loss. the problem is that you just dont feel hungry?
again though, i have no experience with eating disorders and what a sufferer of them thinks so, this is just what im thinking!

sorry not much advice for you fatefulone! i hope that my thoughts might help in some odd way though

Hey fate .. I actually have been diagnosed as anorexic as part of my medical record due to my weight loss. I struggle with appetite too although I'm still sick. Your body can learn to not or to do certain things, coping mechanisms. So because you've been so sick you're used to not eating and your body isn't used to eating normally I'd guess. Perhaps find a nutritionist or dietician to work out a plan for you, they could find creative ways to get you the calories you need. Benson or Jeff might be able to help here since they are the work out/nutrition gurus here.

hi Fateful.. yes i can empathize with this too. i suffered with very painful Crohn's for years, undiagnosed (not believed), and eventually figured that eating equalled pain, so i stopped eating. eventually i broke down, my parents called in the GP and he sent me to a psychiatrist who diagnosed anorexia. i kept saying no - i'm not trying to punish my body, it just hurts when i eat. but he stuck with the diagnosis. months later, i was diagnosed with Crohn's and needed extensive surgery

after all the ups and downs i'd had with food, i still have a warped relationship with it. and even tho i've had years with no active Crohn's in my intestines, i have always felt uncomfortable eating anything more than a small meal or snack.

some of it is physical, some of it is emotional, but it doesn't mean we're anorexic.

my advice - treat your appetite & body gently.. just eat little and often if that's what you're comfortable with. fruit is a good appetite stimulant, so if you can stomach any of the softer fruits like grapes, peaches etc.. try a little before mealtimes. there's also something called Minadex (not sure if it's available internationally tho) which is designed for kids, to stimulate their appetite and it really does work.

Fateful... I experienced what you describe close to 40 years ago when I was first diagnosed. Strangley, I didn't have any pain (not that I can remember, anyway), I just stopped eating... no appetite, and I'd feel full after a single mouthful of food. I had a dangerous weight loss and almost written off before they diagnosed the crohns and whacked me full of prednisone
Unfortunately, I also have a strange relationship with food... possibly because I was overweight for a while when I was a kid
I think with Crohns, everything is "normal" and nothing is normal, if you see what I mean... and everydody'e case is complicated in some way

Follow Dingbat's advice and keep posting. Little and often is the way to go in my opinion... and eat what you can when you can

Best of luck

I'm the same as the rest Fateful.

When I was diagnosed, was also diagnosed with anorexia, the same as Drew.

When I have a flareup, I have to force myself to eat, but as the others said, 1 mouthful, and I'm full. But I know 1 mouthful can't make me full, so I force it down.
I try to eat as much as I can, little and often. If that means snacking all day long, that's what I'll do.

I also eat food that I really enjoy when I'm flaring, to hell with calories. If it's tasty, it's probably not good for me, but I need the sustenance. I know, not everyone would feel comfortable doing this, but I've found my weight doesn't go down as drastically as it did when I was younger.

Good luck and keep us up to date with your progress.

Thanks Everybody

Thanks everybody, it is great to get so much info from well experienced Crohnies! Each of you all have good points and got me thinking. I was in really bad shape Oct. 07-Apr. 08 and I think maybe I just got used to not eating. Once I got off the steroids, the weight came off due to a lack of calories. Um...anyway, I am going to keep eating lots of little meals and check to see if a nutritionist is covered by my insurance. Thanks again, I'll update in the future!

Lots of little meals, good idea. It's always better to have small meals than big meals. Much easier to digest.

when I was in flare( years ago thank god) I barely ever ate, but now that ive been in remission for a few years I eat almost non stop during the day lol but I don't eat and carbs or starches or sugars so its all pretty basic foods that dont really fill me up :-( i ate a 4lb salad yesterday for lunch 3 lbs of baby spinach leaves .5 chicken breast and green peppers banana peppers olives chives onions fennel seed oil and vinegar and carrots yum

Hi Fateful,
I can also empathise with you. I was diagnosed with anorexia nervosa in my early teens, but I don't really know which came first - the crohns or the eating disorder. I think it was probably the crohns, although it wasn't diagnosed until last year. I also have food intolerances to wheat and dairy which make me bloated, so that didn't help with the feelings of being fat and being scared of eating.
I think if my crohns had been diagnosed earlier, I wouldn't have developed anorexia - or at least it would never have gone so far. But now I battle with both. I am currently very underweight (though not as bad as I was 6 months ago), but I have to fight with myself to eat to try to put on weight. I am also on PEG feeds (feeding through a tube in my stomach) to help me gain weight, as they are easier to absorb - but I have to really fight with my 'inner demons' to run it every day.
Eating little meals more often is certainly the way to go. Also, energy drinks/shakes can be helpful - similar to my PEG feeds, they are easier to absorb, lots of calories in a small amount and have heaps of vitamins etc.
Can you go to see a dietitian for advice? Also - please don't take this the wrong way - but it might help to see a therapist. Even without the weight/eating issues, this disease is hard to cope with and if you find a good therapist, they can really help.
I really wish you luck.

I know my doc told me a lack of appetite is normal when you are flaring. But he did say to be careful not to lose too much weight. I try to drink ensure when I am flaring to help with calories when my appetite is poor.

Welcome to the forum

I tried Ensure for a while when I was in really bad shape, but it seemed to make me extremely nauseous every time.

Eating more, yet staying the same weight.

Hey again - I have started to eat more...even when I don't feel hungry. I have been maintaining my weight at 117lbs. It has not flucuated at all even though I have been purposely eating a lot of cookies and cake, yummy!

I have been thinking though....Do any of you think Crohn's is always active, even during quiet/remission periods? Even when it is causing no pain?

:sheep: How cute is this!

well...hmm. i think that active crohns may not necessarily always cause pain. you may have active inflammation in there which is sucking energy from your body, hence your inablity to gain weight, but maybe it is just not giving you physical symptoms?

the definition of remission is when theres no signs of crohns in your body, so id have to say no, i dont think the crohns is active during remission. if the crohns is active then its not remission in my opinion. uhmm make sense? lol i feel like that was a very roundabout sentence haha

but....i do think that you can have "quiet" periods, where the crohns is less active and you dont have symptoms, but it is still there nonetheless.

lol what is that? a sheep skip roping?? lmao i love how random that was!

i usually dont eat much to begin with but i stay at about 160 it weired i know but when im on pred i eat a lot and i still dont gain or loose weight...not sure why...but when im not on pred i eat a lot of saltien crackers untill my mom makes me eat food ... but other hen that i dont want to eat unless i have a craving for something^.^

kello82 said:

well...hmm. i think that active crohns may not necessarily always cause pain. you may have active inflammation in there which is sucking energy from your body, hence your inablity to gain weight, but maybe it is just not giving you physical symptoms?

the definition of remission is when theres no signs of crohns in your body, so id have to say no, i dont think the crohns is active during remission. if the crohns is active then its not remission in my opinion. uhmm make sense? lol i feel like that was a very roundabout sentence haha

but....i do think that you can have "quiet" periods, where the crohns is less active and you dont have symptoms, but it is still there nonetheless.

lol what is that? a sheep skip roping?? lmao i love how random that was!

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Heheehee - that about say it all doesn't it! Stupid disease makes no real sense Thanks for the reply!

I have the same problem, my appetite is always awful. I was diagnosed with crohns when I was 15 and weighed only 115 lbs and was 5'10. Pred worked wonders for my weight and appetite but was overall an awful experience. I found going to the gym often helped with my appetite and was able to get up to 170 lbs, but after not working out due to intense work schedule I dropped to 130 lbs and am stuck at that. Any one know of a good way to increase ones appetite without medication?

I used to haver the same problem as you! my appetite LITERALLY disappeared overnight a few years ago before I was diagnosed. for about three years after that I kept losing weight (still undiagnosed) because every time I would get sick (e.g. stomach bug or cold) I would lose even more weight and then just not gain it back. Eventually I weighed 90lbs and went to a doctor and was diagnosed with crowns and coeliac disease and hillary disease. I was put on pred for 10 weeks and gained back enough weight and was around 108lbs and was comfortable at that. I was then put on another course of pred for 6 months and am now 115lbs (i'm only 5ft 2" btw), have been off pred for 3 months and STILL cannot stop eating! My fear of gaining more weight along with insatiable appetite has made me develop a sort of binge eating disorder I suppose you would call it... and I'm pining for the days when I didn't have to worry about my weight! Ha, I guess the grass is always greener on the other side! My advice to you from when I didn't have any appetite is, as the others said, eat little and often, and also concentrate on high calorie foods such as nuts, peanut butter, dark chocolate, full fat dairy yoghurt/cheese/milk, bananas, red meat. (or whatever out of this your stomach can tolerate) and also there are various supplements you can get that stimulate your appetite so you might look into them. Smoothies are a good way you get calories (you can add yoghurt, peanut butter and extra protein powder) that is easy on your stomach, although they might be filling. and also, on days that you are feeling well you might try doing muscle building exercises (e.g. lifting weights) because I know in my case, a lot of my weight loss was caused by muscle wastage, so that is another way in which you can put on weight. Also, muscle building work seems to stimulate appetite after a few hours in a lot of people!

Hello everyone!
I have Crohn's Disease I am 24 years old. Was diagnosed at 14 years of age. Had part of my ileum removed. I have a huge scar from one side of my tummy to the other. After my surgery I had a good quality of life. Up until this winter, constant visits to the emergency. For them to ONLY send me home after controlling pain, and throwing me on Predisone. Even tho my blood work looked fine and after countless x-rays, CT scans and MRI's and colonoscopy's that came back normal with no active disease. I went crazy on the Predisone and now am off it. About 1 month ago, I lost all appetite. I was 148lbs. just over 1 month ago I am now 130lbs. and still losing. I feel sick and weak. I don't crave food or water. I try forcing myself I puke, I don't have a blockage or any swelling as doctors have checked. I don't know what to do I have lost weight rapidly I have no energy at all.

My Butt Hurts said:

I lose my appetite when I am in a flare. I force myself to eat, but nothing tastes good.
Welcome to the forum by the way.

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I agree.