Loss of Appetite & rapid weight loss

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New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/15/2010 9:28 PM (GMT -7)   
Hi all,
Is there anyone with CD that has issues with losing your appetite and or losing weight really fast? I have had CD since 2005 and occassionally i seem to lose my appetite and lose weight without even trying. Its not that i dont want to eat, I get hungry and want to eat but when it comes to it and i have the food in front of me I will eat half of it even sometimes not even half and then feel full and cant finish it and because of my poor appetite i am losing weight. 
cry  My family is starting to think i am anorexic but thats not the case i am not showing the signs of anorexics like thinking i am fat or wanting to always be on a diet. I enjoy food too much and don't consider myself fat I actually want to gain weight but they just dont understand it and I cant seem to explain it to them because they are always doing wise cracks about me being too skinny and not eating but i tell them it cause of my crohn's and they tell me not to use that excuse, if there is anyone else out there going through the same situation i would to hear what you guys have to say and any tips or ideas on how i can gain weight again.
I need help and advice.

Veteran Member

Date Joined Jan 2003
Total Posts : 6143
   Posted 2/15/2010 10:19 PM (GMT -7)   
yep, i been going through that since about halloween.. lost 15 lbs so far.. and im on TPN! as well. they want me to eat as much as i can so they dont have to put so many chemicals in my TPN formula, but all of a sudden i just cant. i eat from the time i get up till i go to bed. about every 1/2 hour i bet im eating something, but im not anymore. ive been through this before also but still cant explain it.. as to why. it has always gone away eventually.. so hang in there


Veteran Member

Date Joined Jan 2010
Total Posts : 794
   Posted 2/16/2010 2:05 AM (GMT -7)   



You sound like my son(16). he could be starving (quite literally) and unable to eat more than a mouthful or two (he was weighing under 98lb) From what I understand the inflammation stops the body from digesting/absorbing nutrients and in my son's case (he not one to sufffer with diahorreah(sp?) his system was completely backed up and it was physically impossible for him to swallow any more food and then his appetie just deteriorated.

He was put on various drugs and approximately 7 weeks of total enteral feeding (basically partly digested food drinks) and then solid food  re-introduced over 3 weeks. This has done wonders for him, colour has returned to his skin and he is now gaining weight smile

He still cannot eat 'normal' sized meals but has lots little and often as well as continuing on one of the enteral drinks and a high calorie shake drink every day in addition to normal food.

Tell them (politelysmile ) that they are ignorant about the disease (as I was-although I did appreciate something was drastically wrong, just didn't know what) That it is not simply bad stomach pains and typically diahorreah, and it can cause a whole host of other issues, inflammation, strictures, bodies inability to absorb /digest food/nutrients resulting in anaemia and malnutrition, fatigue, loss of appetite, mouth ulcers, painful joints and all kinds of other problems that I have failed to mention.

Have you seen a specialist for help?

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 2/16/2010 4:48 AM (GMT -7)   
When Crohn's makes me go through a skinny phase and people comment I just joke that Crohn's is like an involuntary stomach bypass. I find for me the best way to gain weight is small changes to make what I can eat more calorific and to add meal replacement drinks as well as actual food, and lots of carbs - easy to digest and can really help to boost weight gain.

Regular Member

Date Joined Oct 2009
Total Posts : 253
   Posted 2/16/2010 6:15 AM (GMT -7)   
That has happened to me too, in the months before my diagnosis last year (which was also my first year of university). By the time summer rolled around and everyone from my high school was back they all thought I was anorexic or something, it was kinda hurtful and alot ignorant. Dom't worry about things, eat at your own pace and don't make yourself sick by eating too much. I'd recommend trying to eat several small times a day instead of sitting down to 3 large meals you can't finish, and adding in a high calorie/protein meal replacement drink like boost or ensure if you can tolerate them!
I am back at a healthy 120 pounds after going from about 130 before diagnosis to around 100 at my lowest and I feel good :) Good luck to you! The weight will level out once the disease is under control... I hope you find some relief!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 2/16/2010 7:20 AM (GMT -7)   
I don't know if all Crohnies are like this or not, but I am not a big eater. I will eat a breakfast burrito for breakfast, and a sandwich for lunch, and then can easily not eat anything else the rest of the day. I am just not a big eater. I am not loosing weight, but my weight does stay pretty consistent.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/17/2010 8:34 AM (GMT -7)   
It comes and goes for me, there are some days (rarely though) where i can only eat a bowl of soup for lunch and salad for supper and feel full, however most days i consider myself a big eatter and can't seem to get full. A typical day for me would be a couple pieces of toast and fruit or a shake for breakfast, apple/bannana and granola bar for a snack, ussually some left overs for lunch, a muffin or some veggies for a snack, a big meal for supper, and then ussualy some some small fruit or crackers for a night snack. I estimate i take in about 2500-3500 calories a day. However, i still can't gain any weight, and have lost about 30lbs since i was first diagnosed 3 yrs ago, and to be honest its get very frustrating, but i plan to just stick with it and keep upping my calories and hoping for the best.
Does anyone else notice there wieght fluctuate thoughout the day? I recently purchased a weight scale so i could keep track of my progress, and noticed some pretty crazy changes, for example; the other day i weighed myself before i went to bed and was 149lbs, then in the morning i was 147lbs, after work i weighed 153lbs (which is wierd because i basically just sit at a desk for 9hrs a day and do nothing) anyways i was happy to see this, i had a decent size meal for supper and then a snack for later on, and to my suprise when i weighed myself before bed i dropped to 149lb again, and the next morning i was down to 146lb......how is this possible? where is the weight going right after i eat?....has anyone else noticed this type of thing happing?

Regular Member

Date Joined Jan 2008
Total Posts : 37
   Posted 2/17/2010 8:57 AM (GMT -7)   
When I was first diagnosed in high school, I would get really hungry and after taking a single bite, even of my favorite foods, I would feel as if I had eaten a huge meal.  This lasted for months and I lost 30 pounds quickly - the school nurse notified my parents that I may have an eating disorder.  Luckily this did not persist and I was able to eat/gain weight again within that same year.
This happened again when I was in college - same feeling of initial hunger followed by extreme fullness after a single bite.  I was lethargic and couldn't really stay awake much of the day.  This time, I was on very high doses of azathioprine and when this dosage was reduced, my apetite came back again.  Generally, when I am going through a bad flare I would have this experience.  When things subside, I am able to eat again.  I haven't had this problem much since starting Remicade and have been maintaining weight fairly well over the past few years.

Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 2/18/2010 5:21 PM (GMT -7)   
This is a really interesting discussion for me! I find the same thing, Dodger84, I can feel very hungry, eat a few bites, and then I feel completely full. If I am going to have an entire, ‘proper’ meal, it can take me hours of what others call ‘picking’. I find it hard to deal with socially, because being 6 foot tall and 120 pounds, people assume you’re “on a diet” or have an eating disorder. I had previously thought it was to do with food anxiety associated with Crohn’s but if others are experiencing the same thing, perhaps not. The other day I even had a waiter comment ‘maam must be on a diet” while I was eating Indian and he laughed. I wanted to kill him. It’s humiliating a lot of the time, and something that I struggle with. I just ‘fill up’ way too fast.

Regular Member

Date Joined Jan 2010
Total Posts : 265
   Posted 2/19/2010 8:52 AM (GMT -7)   
The best shot seems to be mixing your "reduced" meals with caloric meal replacemant drinks. I'm gonna try that. Gaining weight is a endless goal for me.

Filling up fast, apetitte variation, fear of feeling bad after a big (or proper) meal, actually feeling bad after eating, avoiding risky tasty foods, avoiding sugar... Thats a life CRUZADE!
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron (sort of remission, not sure at all)

Regular Member

Date Joined Dec 2009
Total Posts : 70
   Posted 2/19/2010 6:26 PM (GMT -7)   
I have found that sometimes when I get full (or just nauseated) from the food that if I wait and find one of my "go to foods" that I try to keep in the house at least I get something in my system. Then other days everything can make me feel sick. I am really trying hard to get rid of some of the food adversions that can be a real problem for me ( the food can look good and smell good, all set to eat then WHAM, something about that food will put me really off)
I did drop 20 #s in a few weeks (not in time for the trip to Hawaii, but what ya gonna do) but that was a few years ago. Since I have been on the Entcort I have been trying to keep off the weight with more activities, but as we all know that comes with its own problems.
I am glad for this discussion! I was feeling alone on this issue, a little alien. Thanks everyone!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj

Regular Member

Date Joined Feb 2010
Total Posts : 77
   Posted 2/20/2010 5:50 AM (GMT -7)   
Hey melnips your not crazy. Thats crohns. My whole family is heavy people. Except me. The lightess I have been was 105lbs. That was when i had to have a exporatory to see what was going on. If your disease is active boost would be better it has less fat. I have had 3 bowell resections a couple fistula surgeries. The weight comes and go. All last year I kept losing weight and I couldnt stand my self image but then i finally got my appetite back and gained 25lbs. Eating or rather grazing all day. Can really help. Good luck to you. And your family should read some info on crohns then mabe they would see how frustrating it can be.
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