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?

You should try having cancer or epilepsy the amount of aloe Vera or cannabis that's thrown around as a replacement for medical treatment is insane who does that? Oh your child has cancer? Here try this cannabis it's a cure but the government are hiding it because it won't make as much money off it as the poisonous chemotherapy or try this aloe Vera it will cure her 😉

Snake oil merchants

Unfortunately, many chronic illnesses attract people who seem to want to give advice. You have my sympathy. Most people do genuinely want to help. However, some people are just pushing their own agenda. I nod, smile and end the conversation. There’s no point in a debate, they’re not going to listen and I don’t wish to debate my personal health details with muppets.
It can be irritating though! I hear you.

One of my conditions is fibromyalgia. There is a dietary issue which causes symptoms similar to mine, which can be fixed by sticking to a specific diet. I 100% have fibromyalgia and not whatever this thing was called, so naturally it didn't work for me. But having an otherwise lovely doctor tell me it was all my own fault essentially for not sticking to this specific diet..... Grr

You're not being unreasonable but at the same time I think it's important to remember that the people are generally well-meaning. When a loved one has a debilitating illness it's very difficult to handle. I think it's human nature to try to grasp for a 'cure' or to desperately try to fix the problem.

That being said, I can't think of a single illness that would be made worse by clean eating. At the very least, cutting out processed foods and added sugars won't harm you and might actually help cut down on inflammation. So while it must be very annoying to have people inundate you with anecdotal stories, the examples you've given don't sound like the typical 'buy these expensive homeopathic snake-oil pill' stuff.

In any case, I think the important thing is that you are confident that you are getting the right medical guidance. Then if someone talks about their yoga teacher's cure or whatever you can smile, nod, and ignore their well-meaning but misguided advice.

My kid with megacolon could apparently be cured by more fibre according to one doctor we were seeing for something completely separate from his bowel disorder. Yeah right it's not like that wasn't something we already tried Captain Obvious.

30 years in and I’m still told that ‘cutting out wheat’ will do the trick

Honestly it’s exhausting.

I’ll stick with what I know and a side order of Vedo every 2 weeks thanks.

Literally clean eating shreds my insides.

I can’t handle the fibre, fruit and veg literally have me doubled over.

So yeah. Not a single illness.

My mum told me homeopathy cured her friends cancer ( about a month before he died unfortunatly) she also told me homeopathy completely restored heart function to her mate after he had a heart attack.

YANBU but there is a growing rise in people who think they know better then doctors unfortunately, eye roll and you take care if your child ( with the help of the professionals)

What I meant by clean eating is e.g. not eating McDonalds and drinking coca cola all day long. Definitely, there can be foods that are generally labelled 'healthy' but to some people are a bad choice.

Edited to add: in my original post I wrote "cutting out processed foods and added sugars". That is not the same as saying that eating loads of fruit and veg is the right choice for everyone.

Haha that was my initial thought, try having cancer! (I don't mean that rudely, OP. I'm just comisserating.)

Oh I feel you op.

The second I told one of my 'friends' about my bowel disorder she started pushing her supplements on me. Worse she got the hun army after me and they were messaging me all day and night on FB trying to tell me that Juice+ could cure me.

I don't think I've ever stopped laughing.

Needless to say this woman and I are no longer friends.

Yep, chronic migraine here. The next person to tell me to try CBD is getting short shrift. It's absolute bunkum.

I'm fed up of "well meaning" people telling me their sister's cousin's auntie's 3rd child and her ex boyfriend were cured of their migraine by CBD / Doterra oils / daith piercings / drinking more water / cold water swimming / magnesium pills / paracetamol / pinching the nerves in the thumb web / massaging their temples with peppermint oil......

I've lived with this for twenty plus years, I'm under neurology, I've tried every prescription medication and every fad diet, every food sensitivity diet, every bunkum food allergy testing regime including hair samples, I have spent many many thousands of pounds on every piece of tat, every oil, every treatment and therapy or OTC supplement that might make me feel better....

Do you know what helps? The new CGRP injections, triptans, ice packs and dark rooms. That's it. Fucking paracetamol and CBD. 😡

I had someone at work tell me that a lot people around her have cancer since having the covid vaccine. This is sad but I told her that the stats are very high for people to be affected by cancer

I'm glad the turmeric evangelism trend has passed. Apparently DS wouldn't have needed a stoma and huge volumes of immunosuppression drugs if I'd given him regular turmeric shots.
Apparently some Crohns can be controlled fairly well with diet. But not the majority and not while in a flare.

I also have chronic migraines with aura. I have found something that often helps me reduce the pain considerably. If a good friend or family member has similar migraines, should I say nothing? I think it would be very normal to say "hey, just fyi this thing works for me, perhaps it's worth giving it a try?". Where it crosses the line imo is if someone brings it up repeatedly and is pushy/judgemental.

@DuckDuck1234 there is an enormous difference between a fellow sufferer sharing their own experiences and someone who apparently had a headache once in their life telling you about a person they heard of being cured of all ills by Juice+ and aloe vera (although I keep an aloe vera plant for burns!).

I don't mind people saying "x y z helped me". That's well meaning enough if a little wearing after a while.

It's the people who claim IBD can be cured by this or that food, only Big Pharma doesn't want you to know.

IBD is incurable. That doesn't mean you might not have periods of remission. If you are remission that doesn't mean you are "cured".

@PeonySeasons I take your point that it depends on who the person is who is offering the advice. If it's a relative stranger who clearly doesn't know what they're talking about, then it would be quite annoying.

Personally, when people share 'cures' that cost money I'm immediately skeptical since there must be a company out there spending a lot of money on clever marketing.

I still think it's human nature though to try to 'help' by sharing anecdotal cures etc. The people who do it really are well-meaning.

I think eating a diet lower in UPFs is useful and helpful advice to not further exacerbate IBDs like Crohn's.

There is some decent evidence that emulsifiers, gums, maltodextrins, carageenan and artificial sweeteners are bad for the intestinal microbiome and that their inclusion in the Western diet is contributing to high levels of IBD in genetically susceptible people.

However, once you have IBD you aren't going to cure it. And there's a whole heap of supercilious judgement implied in the terms "clean eating".
Plus lots of people think "clean eating" might include going fad vegan and eating a bunch of UPF fake meats, or going gluten free and eating a load of bread, cake and pastry substitutes choc full of the emulsifiers which have the highest evidence against them in IBD. When you'd be better off just home cooking.

I totally understand where you're coming from because I've had it up to here with being told I can 'cure' my rheumatoid arthritis with homeopathic remedies,herbal remedies or a special diet. I've got nothing against people saying 'I tried this and it's helped me' but the moment they start saying that they've 'cured' it by taking such and such a supplement or by eating xyz special diet,I switch off.

Cystic acne. Yes, I have tried washing my face. Ok, good for you, washing your face with water and having no issues. Brilliant. Thanks. Yeah. Thanks for making loads of horrible comments about my skin at a social event.

God I hear you OP
And clean eating can get in the fucking bin.
It's an auto immune disease not having a few Marcy d's won't stop your body's immune system attacking itself.
DD who was breastfed til she was nearly three and one of the healthiest people you could meet until the bastard that is IBD happened.
But yeah changing her diet will control a disease only barely kept under control by complex biologic medicines.
Should have told all those scientists who are researching cures for IBD
" Down tools lads a spot of clean eating will do the trick"

I have Rheumatoid Arthritis. If I had a pound for every person who told me it couldbe cured by
Tumeric
Gluten free
Glucosamine
Any other snake oil
I would be rich but I'd still have RA. If those things worked my Rheumatologist would be out of a job.

I hear you! 30 years in and people still come out with insane stuff. Dancing in some random river sticks out,

I hate the insinuation that you're not doing enough to help yourself.

18 operations in, no one is going to be able to magically fix things. I don't need woo woo stories!!

People want to believe they have control over their lives, it's scary to think that something random and unstoppable could afflict them. And so consequently if anyone else is sick then in must be their fault in some way, it must be preventable or curable.