What is it about Crohn's and IBD that makes people think they know better?

[MumofCrohnie]

I have had it with conspiracists telling me that their yoga teacher cured Crohn's by clean eating or their uncle's friend's wife cured their Crohn's by ignoring the doctors and changing her diet.

Frankly I am going to believe the professionals who have chosen to specialize in this area of work, the research papers and the results of medical tests that show my daughter's condition over your bollocks "advice", especially when your Facebook feed is full of COVID denial and anti vax stuff.

Where do these people come from and why do they think their opinion is valuable?

AIBU?

"Humans were never designed to be carnivores."

Nor are we designed to live without a parts of intestines

@ApplePippa you do you. But there are people who got butchered via mainstream advice without exploring all the options first. That "random" on youtube is one, surgery on NHS, dietiary advice followed from NHS. Not sure what's wrong with sharing knowladge with sufferers, some people may explore it further themselves and tget improvements.

OP: unsolicited advice is annoying, especially for an incurable condition
Some posters: ah but have you tried my unsolicited advice? For, you see, I am right, and if you just try it you'll be cured!

You couldn't make it up 😂

Ooh, BINGO!

Maybe go back to You Tube, this isn't the place for someone like you. Bye bye!

You can't cure IBD
And as this thread demonstrates in places you can't cure stupid.
At least IBD can aim for remission it appears stupid and tone deaf is forever.
If it wasn't so annoying and depressing I'd probably laugh

Quite! As a health professional (retired) I don't think we do any favours by giving these totally different illnesses acronyms that were so similar!(That goes along with my general hatred of acronyms in medical notes in general)My son has UC now on infliximab and azathioprine. He's the best he has been since diagnosis 3 years ago. He did take CBD oil for the pain but seems to have stopped that since having 3 months in Australia/NZ and Japan!! That was fun trying to keep his infliximab cool!

Knowledge is useful if it is backed up by safe evidence.

Of course what the condition is matters! IBS is vastly different IBD.
I have a serious lung disease, if I followed the same advice as someone with a one off chest infection, I could die! Honestly!
IBS and diet are strongly linked. It can be horrible but it won’t kill you. IBD is a serious autoimmune disease with objective tests showing disease activity.

I find there's 2 main types of unsolicited advice for long term conditions. There's the "this one simple trick that doctors don't want you to know about" totally lacking in scientific basis, saw it on the internet so it must be true type of advice, and then there's the "have you tried taking paracetamol" type of advice that leaves you thinking "why no...I have been living with this condition for many, many years and never once in that time have I ever thought of or has anyone ever previously suggested, the most basic, first line self management option..."
Oh actually, there's 3. There's also the "it's all in your mind - have you tried yoga" ones. My MRI scans say different, but what would I know?
I'm not sure which is more annoying but either way I keep my thoughts to myself and just smile and change the subject because there's no getting through to some people.
One simple trick that I actually have found helpful is ignoring people who don't know what they are talking about!

You've kinda missed my point. But OK love..

You clearly also can't cure patronising....

Oh actually, there's 3. There's also the "it's all in your mind - have you tried yoga" ones.

And the ones who put every chronic illness down to 'trauma' thanks to Bessel van der Kolk and think autoimmune diseases are all caused by child and/or sexual abuse.

Agree: I'm IBS D + C diagnosed. Mine was inborn. I've always had a problem that gotten worse after certain other medical conditions came into play.

IBS D + C is horrible, embarrassing, degrading, etc, but as you say, it's not a killer.

In mu case though it is not diet related, which is more unusual than usual.

It is related to having a twisted colon (medical name is torturous/elongated/redundant colon), which doesn't lay as it should. Diet health doesn't work for me.

Though obviously a decent diet is far better than an unhealthy diet in this as any health condition

I also have D with this, which is more unusual with twisted colon as it's usually C only. However, I've both.

Like you, medical advice from the correct people is the only way forward. I'm not saying alternative can't enhance treatment. However, it must never be used instead of medical advice and should be checked with your GP/medical consultant.

That is the same for any condition. The number of people who think they know more than the medical profession is unbelievable. I know that with my other conditions, too

Another annoying and insulting comment I've had referring to my double whammy of crohnes and coeliac disease is
"Nobody had these problems in the past" "I never knew anyone who couldn't eat bread"
my response is "That's because they were all dead".

That usually makes them go quiet.

That's because you're talking shite. No diet "cures" a disease. A disease may be less aggravated by dietary choices if they are linked with the condition in some way, like IBS but it cannot cure IBD or chronic migraine or T1 diabetes or cancer or....

"Ok love" is usually the sign of a failed argument!

There is good evidence that bread was very different in the past, also. That may partially explain it, surely?

You know what? I have actually tried a carnivore diet in the past. It did nothing. It certainly wasn't the miracle this YouTube video makes out. It's great that it worked for this one person, but it is not a universal miracle cure for everyone before they are "butchered via mainstream advice".

There is nothing wrong with fellow suffers sharing advice for things they found useful, which may or may not work for others. Having someone who clearly knows nothing about IBD but has found one thing on the internet telling someone what to do is beyond patronising.

I will not be engaging with you further.

My sister has Crohn’s and is on biologics as well as having had surgery to remove part of her colon.

She is the same, what is healthy and clean to me leaves her doubled over in pain. She follows a low residue diet through necessity.

Also, it’s possible to have both IBS and IBD at the same time. It may have improved the symptoms for this one person because they also had IBS and were no longer eating a trigger food.

Yeah well meaning in a way. There is an urge to share ‘knowledge’ in humans. But say your name is Mike Hunt. Would you still appreciate the jokes and comments by your fifties? Also it’s an assumption of superiority- as tho, if they had the condition they certainly wouldn’t take it lying down, they’d eat aphids in aspic like the Facebook post said. Etc. it can wear you down when you’re worn down in a big way anyway.

Same for me. I do eat primary foods but I cannot go gung-ho on fruit and fibre and many veg.

Yes that's extremely infuriating. Lots of conditions were genuinely far less common in the past for all kinds of reasons, or were there but just not understood and diagnosed as other things. Doesn't mean they are any less real!
An elderly relative recently told me that he doesn't believe in asthma as "nobody had one of those bloody puffers at my school,I can tell you." I have a suspicion that the fact he actually left school in the year that the very first metered dose inhaler was approved for use might have something to do with that!
I don't know why people find it so difficult to understand that not only are there real shifts in disease patterns with time - after all, I have never seen a case of diphtheria but I don't think it's a made up illness - but that medical knowledge also evolves. In the past my son would quite probably have been diagnosed with Crohn's. He doesn't have it, but his actual condition wasn't understood and given a name until about 25 years ago. In the future we'll probably be diagnosing people with more conditions that currently "don't exist" as hopefully we will continue to expand our knowledge base and treatment options. I find it quite bizarre that some people think that if they don't have personal experience of something it's not real.

What was your point? I genuinely don’t understand.

You managed your condition with diet. Your condition is not the same as IBD. Doctors recommend dietary changes for IBS, so what is your point?

Earlier I said people usually mean well but a few posters on this thread are making me re think this.

I am irritated and I don’t even have IBD! It’s in my immediate family though with multiple family members suffering and it sucks. I thought we were going to lose my mum at one point, she was so poorly.

Yeah there are a couple of posters who are proving the OP's point quite nicely.

Earlier on in the thread I advised nodding and smiling, and then quietly ignoring. I need to follow my own advice!