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Hi, I was diagnosed with Crohn's Disease about 4 years ago, I am a 41 year old female, 5'2" tall, I have lost 1/2 of my original body weight and am now down to 100-105lbs. People ask me about the weight loss or say stupid things like "you need to stop dieting, you look horrible", or if I do reply that I have been sick they say something even dumber like "wow, I wish I could get sick and lose that much weight". I mean, really? What a stupid thing to say. Some even think I have an eating disorder like bulemia! It is sooo frustrating to me.

To me, this disease is a very personal issue that I don't want to discuss/explain with just anyone. My question is what is the appropriate response to these questions/comments? Has anyone else had to deal with this alot?

Reply posted for marci1969.

 Reply posted for Marci1969.

I am thinking of printing a bussiness card, with this web site on it,

The card would read in bold print IF YOU REALLY CARE GO TO THIS WEBSITE

and I'll pass it to everyone who asks me for the 10th time why don't you eat this, why are you lossing so much weight, why don't you want to come over for dinner, or for the people that try to rediognose my problem.

 Reply posted for Laura 6MP.

You said "don't be like me and say ......."  ???

 Reply posted for artsylady.

Goodness!! reading these messages  are making me angry. 

 Reply posted for Marci1969.

LOL the appropriate response....  it would go something like "F U, F Off,ect."

 Reply posted for Marci1969.

You are not alone. I'm 5'2" as well and if I've been sick and get down to 104 and 105. It makes a big difference in my appearance. I hate getting comments from people at work, especially those trying to lose weight saying they wish I had my problem so they could eat whatever they want and never gain weight. It takes a lot of self control not to respond sarcastically or go off on them sometimes. It's really annoying when they make comments about me eating something fattening for lunch in front of them while they are dieting. I try to brush it off but have snapped and pointed out that I don't complain when they eat so many things in front of me that I can't eat. Some people have learned it is a very sensitive subject but others don't seem to get it. I just brush them off, it's the only way to stay sane.

 Reply posted for Marci1969.

Marci1969,

It definitely looks like you're not alone.  As a man, I get about 1 comment a week about how skinny I am.  I'm 5'11" and weigh 135 lbs.  Diagnosed in January 2010 with Crohn's and lost 20 lbs pretty rapidly due to messed up insides, constant bathroom runs, and sever bloating and cramps.  After starting Remicade in February all of the symptoms vanished and I'm now finally back up to 135 lbs.  I cannot gain any more weight for whatever reason, probably metabolism and Crohn's but I'm still trying.  Usually when someone says something to me about being skinny, depending on what they say of course, my responses range from zero response, to explaining that I've got Crohn's Disease, or telling them to be quite.  A few times I've gotten angry with some individuals and they get the point pretty quick.  As others have written, giving people a hard time for being slender appears to be accepted amongst everyone, even though poking at someone who is fat is totally out of the question.  It upsets me too so at least we're not alone right?

CrohnsMan

 Reply posted for Marci1969.

I also get this ALL the time. And if it's not that, then it's some ranting idiot's speech about how "I can gaurantee you that you do not have a disease, it's just a food allergy, and you have to eliminate all foods and add them back into your diet one by one to find out what it is you're allergic to..." Yeah... I'll get back to you when I can afford to lose all the more weight I'm going to lose on that one!!

It always amazes me how there are scientists and researchers who have dedicated their lives to researching these diseases professionally, and yet there are always all these average jos schmoe's out there claiming that they know better than the pro's after hearing only brief discriptions of the disease.

 Reply posted for Marci1969.

I am a man with Crohn's  Disease and losing weight and being skinny might be even tougher on a man, and more so when stupid people say stupid things about it

as you can see from all these posts you are not alone

what is most annoying for me is that it seems okay to ask people or comment on their weight loss but God forbid you respond back with " really you look like you gained 10 pounds, your rude"

people just have no clue,  I wish Crohn's or UC on no one but when people say the oh I wish I had that to lose weight I sort of wish they had one week feeling the way we feel.

 Reply posted for Marci1969.

Hi everybody,

Im new here, and I just wanted to say that I feel your pain. I have always been a small person when it comes to weight. I've had colitis for about 4 years now and this year it is worse than its ever been.  I still work outside of the home, and it's been hard dealing with it.  People at my job have commented on my obvious weight loss (I was small enough before, now I've lost more weight) and I know they don't mean any harm, but it bugs me so much, sometimes I just want to go somewhere and hide and cry. My clothes just hang off of me.  I'm constantly pulling up my pants that I wore 3 years before I had my baby! It's very frustrating. Please forgive me if I'm going on and on, but I'm just glad I'm here so I can talk to people who are going through the same thing. I try to just explain I have colitis, and what it is and all, but that just makes me feel depressed.

 Reply posted for Marci1969.

I'm pretty little so losing 10 pounds is significant. A lot of people commented on how thin I was and when my boyfriend's parents first met me, they asked him if I was anorexic. I was a swimmer in high school and known as the jock in my small circle of friends so it even startled me to see how frail I looked. I gained all the weight back (and then some!) because I've been on predisone for 5 months and I'm about to start working out again. Does abdominal workouts like crunches aggravate Crohn's?
I was never one to linger on body image but Crohn's certainly does some damage.

 Reply posted for Marci1969.

I've had that problem, too. I'm 5'2", and when my Crohns had me looking like a stick figure, people would ask how I got so thin. I would have to remind myself many people don't know about IBD, and sometimes I'd use the conversation as an opportunity to educate them a little, explaining about how Crohn's behaves. I'd also remind myself we live in a society where many people are overweight. When people see someone who's underweight, it looks rather odd, and many people are just naturally curious. I think most people mean well, they're just responding to an unusual situation.

It's not easy to always talk about it when you're not feeling well, but most people do respond when you explain a little about what's going on. Many people I spoke to would often understand, some would say a friend or relative of theirs had IBD, and those who didn't would walk away knowing a little more than they did before. So we can help educate, which isn't a bad thing.

 Reply posted for Marci1969.

Hi, all I have to say as well, is that anybody who elects to make ignorant comments like that to you, just does not get it to say the least, and I know its frustrating. I have had the same irrattional comments to like the one, "man, it would be great to have that intestine problem you have so I can loose weight, it would be great".  This is what I would do, if the next time someone ask you why your not feeling well, again, that kind of thing,  just look them right in the eye and say I have CROHNS disease.  It may make you feel better, and when getting rude comments, it a very stand up thing to say, you deserve the respect.  I was 21 when I was first diagnosesd after almost a year of doctors not knowing what was wrong, it was first thought to be a ulcer.  I explained to them that I litteraly had knife stabbing stomach pains, and my weight weight down to 115 pounds.  I remeber one doctor saying to me, are you sure its not psychological the pain?.  I dont have to tell you and I'm sure the other Crohns and UC people on this sight on how that felt.  But yeah, its imperative you keep a close freinds and or familly up to date on everything on appts. and how you feel, people who really understand.   I'm 44 now and just over a year agao I had to get a permanant Colostomy, and I have never felt better.  I can play hockey again, dont have to worry about dirty bathrooms, and I can eat like a horse.  Also, dont hesitate to see a therapist if that is something you have thought about. I know it was a huge help to me,  just to be able to simply talk and kick it around as they say.  Remember , and I think anybody would agree, having Crohns disease like yourself or UC, you will be a much stronger person and more mature then the people who make crazy comments, alway try to remembr that.  Hope some of these ideas make things easier for you, take care! 

 Reply posted for Marci1969.

I always get that. At five feet tall to start with, I didn't have lot of weight to lose, and I've lost 35 lbs in the past few months. I get everything from "you look great, what are you doing" to "Do you have an eating disorder" to "you're going to waste away to nothing if you don't stop losing weight." For the people who know what's going on, it's REALLY annoying. Today I'm pissed because a friend told me I need to "just tell myself I'm going to eat and not throw up." This person has seen what Crohn's has done to me over the past 2 years, and how I've been sick, tired, running ragged to doctors, hemmoraging out money for doctor copays and meds. IF IT WAS THAT EASY TO JUST EAT I WOULD HAVE DONE IT! You can't imagine the number of times I HAVE tried it - all day every day I will myself to get better, to sleep, to not throw up. It's just not up to my mind to decide, unfortunately. Unless people go through it, they don't get it.

 Reply posted for Marci1969.

Unfortunately we Crohnies/UC people are going to get that a lot. Make sure the people you love and your closest pals you can trust know about the disease and how unhealthy it is to have a weight loss like that.

The others you don't know very well or don't trust with your secret, just smile and nod. It isn't any of their business anyway and you can tell them that in a polite way as well.

Don't be like me and tell them it's none of the g*damned business!

 Reply posted for Marci1969.

Unfortunately, we have had to deal with the issue, just a bit different, with my 10 year old daughter.   People comment how "small and thin" she is for her age.    I taught my daughter to say, "I may be small, but I'm fiesty"!  Another thing I taught her to do is a secret, but I'll share here......to say to herself, "you are such an idiot!"   

Be well, and do your best to let the comments roll off your back.  

Lizzies Mom

 Reply posted for Marci1969.

It's unfortunate that everyone typically considers weight loss to be intentional but you know, we are such a weigh conscious society.  I think that most people who say something probably think you'll be flattered because they are assuming you are trying to lose weight.  You might try giving them a smile and saying, "You know....unfortunately my weight loss is due to health issues.  I can't recommend it!"  I suspect that will put an end to that line of conversation.  And, hey, if it doesn't, then you KNOW they are just rude.

 Reply posted for Marci1969.

i used to be morbidly obese and two years of crohn's disease has brougth me to the point of approaching underweight, so i deal with this kind of stupidity/insensitivity every single day.  i work in a large corporate office and at least twice a day someone tells me that i need to stop losing weight or i'm going to wither away (gee, do you think i don't realize that and that it doesn't scare me to death, you *** ????)  to those people i usually respond with a flippant "don't i know it!!!!"  or i get the well-meaning people who honestly don't know what i am dealing with complimenting me on my weight loss and excited to know what i did to accomplish it.  i always feel bad when i have to explain to them that i have crohn's because they feel bad for bringing it up (poor things!) i also have people who are concerned when they see me looking bony and want to know how things are going & if they can help in any way (bless their hearts!)

so it's just something irritating that we have to deal with.  however, the ones who are truly insensitive *** s will only make you appreciate the ones who are truly goodhearted and supportive of you.  hang in there!!!!

 Reply posted for Marci1969.

I am a smart mouth so... I told people I was "medically anorexic".  Not a lie.  I was anorexic just not the nervosa variety.  I went out to eat with my son during my disappearing phase and the waiter crouched down beside me and said "please eat pretty lady, please."  He kept bringing me samples from the kitchen.  People like that helped.  Now there were a lot that made me angry.  I had a woman stop me on the sidewalk and berate me for slowly killing myself and leaving my family behind.  I had never met her before. I discovered that the young adults were more compassionate and understanding than the adults closer to my age. 

I was fortunate that my hubby had privately explained to our friends and associates what was going on with me.  They provided a very comforting support group.  It is not every 40+ woman who has a rock band sing for her in the hospital. 

You will regain your weight, I promise.  I did.  I ignored the muscle loss and I am now paying for that.  Please make sure you rebuild your muscles as you can.

Breezy