More public awareness on Crohn's? Ha!!

It's like when those 40 something actresses 10+ years ago all had babies and SWORE they did not use ART or donor eggs. uh huh, yeah right.

I'm sure Sam is sticking meds up her butt and is too embarrassed to say so, and really, why should she? Perhaps she did talk about her meds but The Guardian decided not to publish that part. Who knows? Some "journalism!"

There's not much chance of the seriousness of the illness being accurately portrayed, when even some of our own people make out that it is some kind of eating disorder. (ie All you do is cut out a few foods and you'll be fine.)
Those with more severe disease know better than to trivialize it that way.

Usher said...


We need to understand that EVERYONE IS DIFFERENT. Some people have found relief through medication; some through diet, meditation, yoga, herbal supplements, FMT, Bob Beck protocol etc. It is ultimately one's choice to find an approach that works best for self.

No, those people have attributed their relief to diet, meditation, yoga, herbal supplements, FMT, Bob Beck protocol, etc. They do not know - and can not know - with certainty that their relief comes from any of these things. It may have come from something else entirely, something they're completely unaware of.

I swear people WITH this disease can be a bigger determent to our cause then anyone else. I get people don't want the medications, or they don't work, and they want to self treat with supplements and diet. But really it's just trivializing this very serious disease. I get emails from my mother-in-law asking me if I take essential oils and take this or that supplement. People ask what I must have eaten when I'm flaring, because it's obviously my own fault why I'm sick. Would you say those things to a cancer patient? Doubt it. Yes, everyone is different. People have more mild disease then others. But the trivialization of this disease needs to stop. If it's own patients don't take it serious, why would anyone else?

I find it SAD and frustrating that the only awareness coverage we get is from patients with this thinking, and with that mild of disease. They are to thank for others blowing us off as having a small bathroom issue relative to a food intolerance.

Rango16 said...
NCOT - yeah, i'm sure keeping crohns secretive to everyone will help us all out so much. so you wont give anything to any ibd awareness projects, what about other disease's? are you against people even knowing about health problems? i'm really not understanding your thought process on this.

If I won the lottery (and why wouldn't I with such great odds of 14 million to one? <_<), then I'd look for research teams doing actual research into Crohn's to donate to. That way I can avoid three quarters of the money being squandered on charity workers' salaries, PR exercises, etc.

To everyone else: Yeah, you make a very valid point about some folks with Crohn's being just as bad, if not even worse, for perpetuating the myth that you can control Crohn's simply by watching what you eat. I must admit when I first got Crohn's, I didn't see what all the fuss was about. As I wasn't fobbed off with IBS for a few years first, I got an early diagnosis while my symptoms were still mild. Even when I did eventually fall ill, I was in denial for a few more years: partly out of ignorance and partly out of stubbornness. I was the opposite of a hypochondriac: minimising every symptom I had.

I can't help thinking some people are in denial about their own disease. I can't blame people who are new to Crohn's, like Sam. She'll either be lucky and be in the 10-20% minority who have a lifelong mild case or she'll find out the hard way that avoiding drinking white wine isn't enough to prevent things like strictures, fistulas, bowel obstructions, etc.

On a slightly less gloomy note... Happy 2015 folks :p

How do we know that this article was a result of a Crohn's and Colitis charity? I'm just not understanding how that connection was made, particularly.

Other than that, I really don't like how they portrayed Crohn's as being some kind of mild food intolerance where all you have to do is cut out unhealthy foods and then you're good and the disease is controlled. For some that may be the case, but there is a lot more to the disease than that.

HabsHockeyFan-I agree with you..the wide variety of symptoms and tx options-This is a true portrait of this DD..No one is the same on this board..You can't say the disease follows the exact same pattern in any one person nor the treatment. I am not a picture of the mildest or the worst form. I have been afraid over the years on how it would affect my job and insurance. I was having issues last week, and my boss asked me if it was CD. I was not sure if she was asking for the positive or the negative..Knowledge of the general public is very limited..Some only know mild or severe cases..Some just think IBS..

I hardly have ever run in to someone who knows of the severe side of the disease. Seems most people think it's no big deal, like IBS, and can be fixed with diet. Maybe it's a denial thing, but it seems the majority of newly diagnosed people feel that way.

Which is why I'd like for more of the severe side to get awareness. We can always say we aren't as bad or have a more mild disease then what someone read. It's hard to get someone to believe you when they read it's no biggie and here you are in the hospital suffering!

^^ THIS.

Crohn's disease is not an eating/nervous disorder!