General lack of knowledge in the IBD community

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afidz

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Even being in the US, my Facebook is flooded with the BBC broadcast in the UK a few days ago. And then there was that guy's article about eating stale bread the day after that and then yesterday and today the Crohn's and Colitis Foundation trying to clean the whole mess up. Reading through all of the comments on Facebook on all of these articles I am so shocked to read how little people know about THEIR disease. It's one thing to be an ignorant healthy person that hasn't a clue what IBD really entails, but it's another when it's someone that has had IBD for several years. I read someones post saying that UC was an ex-smokers disease!
How can we expect the world to take IBD seriously when it appears that even IBD'ers don't take it seriously.
Every inch of me wanted to private message all of those lost people and explain their disease to them and direct them here. I'm just do completely beside myself
 
Hi afidz. I've recently read a couple of books written by GI specialists. Smoking in Crohn's patients makes things worse while UC is more previlant in x-smokers. They are very careful to point out their is more risk in smoking than getting UC. But there is a correlation to people who quit and develop UC.

Title: Inflammatory Bower Disease
By Professor John Hunter MD
Publishes by Vermilion 2010 (Random House)
 
DJW I know that nicotine is beneficial to UC patients, but to call it an ex-smokers disease? I don't know. I will do research on it before I shove my foot in my mouth anymore. I just don't see how quitting smoking causes IBD itself. I can see the person already having it and not knowing and then when they quit they stated getting symptoms.
 
The only thing that I found in common in the websites thati did read was that quitting smoking can cause a flare in UC patients. I'm going to dig deeper later today when I have more time, but I'd love to hear everyone's thoughts on it
 
Yeah, a lot of people seem to be misinformed in the past few years because of the recent fads in gluten free and SCD diets. It creates this idea we made ourselves sick and we can magically make ourselves better by eating "healthy" which is a narrative that suits the media fine. It's comforting, victim blaming, and works on people's distrust of scientists and doctors all at once. It's really quite insidious and we have to stop them as a first step to raising positive awareness.
 
Even the letters and emails from CCFA make IBD sound just like IBS. I am sick of even our advocates not properly discussing what this disease really is and educating people appropriately.
 
DJW I know that nicotine is beneficial to UC patients, but to call it an ex-smokers disease? I don't know. I will do research on it before I shove my foot in my mouth anymore. I just don't see how quitting smoking causes IBD itself. I can see the person already having it and not knowing and then when they quit they stated getting symptoms.

I agree with you - ex smokers disease is misleading. It like trying to say 'X' is the cause of ibd. A cause and effect statement. That I don't buy.

The author points out the correlation. He doesn't attempt to make a case for cause an effect.
Of people who have UC quitting smoking can bring on a flare. It does show up in people who quit smoking and never had it before. But quitting is just the tipping point.
 
I really think that many people, in general, believe whatever they read on the internet and see on the news. Then when it comes to health even doctors give conflicting information. So what is a person to do to get the actual, concrete, facts? What should we believe? I've started operating under the premiss that I cannot take much of it as gospel. I'm trying to learn and weed through it all, (and I'd like to think I'm learning new things all the time,) but my confidence in these sources has been shaken.
With regards to smoking: I cannot speak to the UC and smoking connection. However, I never smoked and have crohns, for which a risk factor IS smoking. Go figure.
 
Even the letters and emails from CCFA make IBD sound just like IBS. I am sick of even our advocates not properly discussing what this disease really is and educating people appropriately.

That's bad. I'm going to start a new thread: what ibd is to you.
Maybe we can get it into the hands of our advocates.
 
I had a healthcare professional say to me last week, almost as an accusation, that she'd read Crohn's was caused by junk food. I'm a nutritionist who has eaten a healthy balanced diet all my life and I was taken aback at such ignorance
 
I am one of those people who had my first flare due to quitting smoking (I blame my ex, I quit for her). I quit, a couple months later started getting sick, 6 weeks after that was in the hospital.
There is a great deal of debate regarding smoking and UC, yes it helps lessen the severity of the disease however there is dispute to the mechanism.

The obvious assumption is the nicotine, however replacement doses of nicotine given through other mechanisms have very little effect.

The more likely culprit is Hydrogen Cyanide. The theory behind this is this: The lining of the colon helps to absorb and remove Hydrogen Sulfide produced during digestion from our system. Due to a defect in the colon, this is does not happen as it should causing a build up in the system and due to the nature of it damages the colon further. The hydrogen cyanide binds with the hydrogen sulfide creating an non-toxic compound. This is also ties in with why red meat and alcohol, due to high sulfur content, can cause issues.
Ex-smokers generally get their first flare as they remove the hydrogen cyanide and the no longer being neutralised hydrogen sulfide builds up to toxic levels, this takes a couple of months. They may have had signs previous to the flare, in retrospect I had some dating back to childhood, but the hydrogen cyanide kept colon damaging compounds down, and kept the UC flare at bay. But you can't unring a bell and people who resume smoking will see some relief (particularly if disease is mild) but it will never cause remission by itself.

However Hydrogen Cyanide is toxic as such no one will study it (official medical standpoint), but studying the mechanisms of why smoking help UC might lend creedence to using smoking as a theraputic treatment method to deal with it, and the long term effects of smoking are far worse.
 
Correlation and causation are two very different things. The link between smoking and UC could be that people who are likely to develop UC also are the type of people who are likely to be addicted to smoking.

I missed a lot of the misinformation about Crohn's in general. I have seen the model with the ostomy in my newsfeed and emailed to me about a dozen times, and I'd much rather see that!
 
Either you did not read my post, or you skimmed it. UC is a disease that affects non-smokers and ex-smokers. I pointed out why it appears in ex-smokers. There is a component of the tobacco smoke that keeps the disease at bay. At no point did I say quitting smoking causes UC, if that was the case everyone I hung out with back in high school would have it and I wouldn't need to explain why I no longer have a colon. Quitting smoking is generally the "environmental trigger" that causes the UC to rear its head in former smokers.

It has nothing to do with addiction, if that was the case, as studies have shown that the "addictive personality" (whether genetic or not), has little to do with the smoking itself, when one addiction is stopped there is another addiction that take its place (be it internet addiction, smoking, alcohol etc) to release dopamine that satisfies the addiction. If there was a genetic UC/addiction connection you would see it manifest in a larger portion of society, anyone that has overcome an addiction would be at risk, and that would substantially raise the numbers.
 
Sorry Vonfunk. I was wrong when I used the word addicted. It is just annoying that they blame UC on smoking/quitting because there is a correlation. I was trying to use an example that might not have been the best one.
 
It's more than just simple correlation. Quitting smoking, like a bad case of food poisoning or heavy anti-biotic use is known environmental triggers. Studies have shown that ex-smokers are more than twice as likely to develop UC than the regular population. Which is why it is often labelled as a disease of ex-smokers.
 
I am still learning about the disease that I have just been diagnosed with last week. So many things, so very overwhelming.
 
There,s one thing for certain no one knows what causes crohns!very frustrating,everyone seems different with it,smoking,drinking and certain foods affect us all differently,a slice of melon marked my soul.my last checkup my clinic nurse said the very same thing.a screamingly frustratingly devastating illness with no very good answers yet.
 
Since I'm still undiagnosed, I'm still don't know much about the disease really. I was a smoker and yes, my symptoms worsened after quitting, quite a lot actually. But, I still had symptoms when I was a smoker. I've read in a few places that if you're in a flare, you shouldn't quit until you start treatment. I didn't know that and I'm certainly not going to start again in an attempt to improve my symptoms.

I think everyone's case/cause can vary. For some it may be genetic, but for others it could be diet and lifestyle. I was a big drinker and smoker and I do believe it has potentially caused my IBD.
 

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