I'm Feeling Vexed!!!

[DustyKat]

Don't ya just love that word...vexed!

Anyway, it really gets my back up when people come onto the forum and say Crohns can be cured if you turn around twice and do a back flip, okay I'm being flippant with that one, or if you follow a particular diet, take a certain supplement or if you didn't participate in some particular vice in the first place then you wouldn't have contracted it.

I'm not saying that diets and supplements don't play a role in managing this disease because I firmly believe they do, it's more the do as I do and you will be cured. Or don't do as I do and be condemned to a living hell.

Am I being super sensitive because I am looking at this disease through the eyes of a parent? I don't know but I guess in my case, particularly over the last 6 months, the role of genetics has really come to the fore. I suppose in some ways that makes me feel my children have even less control over Crohns and these sort of statements are just another kick in the guts, another way to make you feel like you have failed as a parent and to start second guessing everything all over again. :confused2:. Even when you know they are a crock of s***! :ybatty:

I'm sure my vexatious feelings will subside until the next time I read one of these posts! :wink:

I'm feeling better already,
Dusty. xxxxxxxx

 

[Crohn's Mom]

I can only say ditto at this point...my emotions are on over drive recently
:ghug::ghug:

luv ya Dusty!

 

[troydanielbecker]

I hear you, but it doesn't rankle me so much. Maybe because I'm newer to the game and a little like that myself? But it seems like with any serious investigation into it, and exposure to it, you learn.

 

[Dexky]

But Dusty, it's so much fun to see you thrash them! I must admit, I'm a little leery about totally discounting these "success" stories. But, like Samantha said, what works for one chronie may not work for another.

Still, if someone working in Abbott research lab discovered the "cure" for Crohns and it could be mass produced for pennies or even concocted in your kitchen, how quickly would they be willing to bring it to light? They get $3000 every two weeks for a single dose of Humira!! They have no incentive to even look for a "cure"!!!

PS, I put cure in quotations because I'm afraid Dusty will yell at me!

 

[troydanielbecker]

and yes, vex is an awesome word, by the way.

 

[Welsh-bird]

I'm feeling it too- Following an e mail advising me to give up chemo, and try juicing and fasting. I'm more annoyed that I spent the WHOLE bloody night, too'ing and fro'ing between Gastro and Oncology and considering this!! The nurses must have thought I was stir crazy, and sure as hell, today I feel I'm heading towards the psych unit (where I may just come accross Dr Teflon, who's still recovering following Dr Dusty's outburst).

 

[MapleLeafGirl]

I hear you big time. I don't think it's just because you're a parent of children with Crohn's Disease cause it pisses me off big time too. Makes me want to scream really. I'm sorry but all of this crap they tell you can make you better like fish oil or probiotics or my personal favourite, aloe, will just cost you tons of money to still have an immune system problem and it could actually make you worse. I have tried them all and none of them work. There is no cure (yet) and no amount of fish oil or aloe is going to fix your immune system. People feel safer when they can blame it on something you must have done because then there is no way it could happen to them or someone they love. It's like when you hear about a crime and you're always secretly relieved when it turns out the victim was into drugs or something because then you can say - see I'm safe cause I don't do drugs.

Thanks I feel better now too!

 

[tiloah]

People feel safer when they can blame it on something you must have done because then there is no way it could happen to them or someone they love. It's like when you hear about a crime and you're always secretly relieved when it turns out the victim was into drugs or something because then you can say - see I'm safe cause I don't do drugs.

Bingo! This is called the "just-world hypothesis." I consider telling sick people what they should be doing to get better a very mild (although not benign) form of victim blaming. My MiL is terrible at this. They can say they are trying to "help" but in reality they are telling you that if you would just stop eating bread, or start doing pilates, or move to the alps and eat grass with big horn sheep you would be better. Translation - it's your fault you're sick because you are unwilling to take their "helpful" suggestions.

Believe me, I WANT to get better and I would take any suggestion and do anything if I thought it would get me there. In the meantime take your ideas and shove 'em.

Sorry you're feeling vexed, but I hope our shared rant makes it a little better.

 

[Entchen]

Dexky! They'll win a Nobel Prize! It comes with a pile of money! And fame! Researchers love fame.

Any cure, it will get announced and the researchers will be giving interviews to the world's biggest papers before the drug companies even receive a .pdf of the study findings.

 

[Dexky]

Dexky! They'll win a Nobel Prize! It comes with a pile of money! And fame! Researchers love fame.

Any cure, it will get announced and the researchers will be giving interviews to the world's biggest papers before the drug companies even receive a .pdf of the study findings.

I agree with this K, I just wonder how much big pharma spends looking for a cure as opposed to new treatments. I have no doubt that some independent researcher would love to find a cure but the odds lie with those with the bucks.
They already have a pile of money! And if very many people are injecting Humira twice monthly, that pile is growing by leaps and bounds. I bet they're looking for the next Humira.

I hope they find the next Humira and the next and on and on. The more possibilities the better. It just vexes me to imagine the billions spent on fighting symptoms as opposed to finding cures. I had to get one vex in!!

 

[Grant]

Lost count of the amount of times I've felt like shouting with frustration. About the lack of a cure, the lack of understanding by some (fair weather friends), the lack of sleep.
Such is our life.
25times, I can understand you not wanting to rock the boat where your Mums friend is concerned. However, a few calm but firm words & instructions on how to google CD should put her right. Certainly some people have to be reminded they aren't doctors & haven't a clue what they are on about.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[tiloah]

Guilty as charged, the other day I was telling my friend that it just wasn´t right that he of all people was sick while there were all these a**h**es around enjoying perfect health.
I guess we should shut off the rationalizing altogether, uh?

I think the rationalizing has its time and its place... griping might be one of 'em.