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?

Because anyone who claims to have cured a condition that is currently incurable is talking bollocks and is by definition uneducated about inflammatory bowel disease.

I already made it clear in a follow up post that I don't mind much when people wonder if something might help. I do mind when people claim they found "the cure".

IBS is very much not the same as IBD. If I took my daughter off her immune suppressants and biologic medications and put all my faith in clean eating she would be deathly ill within a few months. The fact that you can manage your condition via diet alone demonstrates on its own how very mild it clearly is in comparison with severe Crohn's disease.

Does that mean eating a diet as unprocessed as possible is a bad idea? No not at all. It's probably wise. We already do this.

I am sadly not going to cure my daughter by eating organic whole foods and it's frankly insulting for anyone to suggest that I could.

@Jumpingthruhoops you are confusing IBS and IBD. IBS is more like an intolerance which can definitely be improved by diet. IBD is an incurable disease.

IBS is not the same as IBD wish people would stop making out it is. IBS can’t kill you IBD can.

Agree I've got crohnes, fruit and veg are off the menu when I'm having a flare. Clean eating makes it worse

Stunned to discover that 15 percent of people here apparently believe it's fine to claim that they and they alone know how to cure a condition that has defied cure despite many many years of research by the minds of the greatest medical specialists.

Obviously none of those specialists thought to look at diet when looking at possible cures 🙄

I started the Storm thread. Occasionally we play bingo with the stupid things people say because, well what else can you do sometimes?
I'd say people come at this from 4 different mindsets:
There are those who have to be right. These people are toxic. Avoid.
There are those who want to fix it because it makes them uncomfortable.
There are those who mean well but don't know what to say.
And then then there are those who just listen. These people are gold.

This kind of post is exactly what the Op is alluding to. Very glad to hear your IBS is better as a result of diet changes. That has bugger all to do with IBD, which is nothing like IBS. I personally wish I had a £ for every person who mistakenly believes that what my son has is IBS, when what he has is IBD, for which there is a 40% chance he will lose his colon... We'll stick to the diet advice from his hospital consultant, thanks.

I posted this on my fb a while ago as sick of all the crap unwanted advice

Yes to all of this. I’ve been living with cancer for 3 years & I’ve heard it all. It’s infuriating! As others have said whether it’s well meaning or not I wish some people would put a sock in it. I honestly wouldn’t dream of giving someone advice about their chronic health condition.

If only it worked 🤣🤣

This kind of post is exactly what the Op is alluding to. Very glad to hear your IBS is better as a result of diet changes. That has bugger all to do with IBD, which is nothing like IBS. I personally wish I had a £ for every person who mistakenly believes that what my son has is IBS, when what he has is IBD, for which there is a 40% chance he will lose his colon... We'll stick to the diet advice from his hospital consultant, thanks.

I second this. I have a friend who often asks if DD has tried certain vitamins or a different diet and reckons if I buy half of Holland & Barrett she'll feel a lot better. It's well meaning but still. She clearly doesn't know the difference between IBS and IBD and I can't be bothered to constantly explain it to her. We'll stick with the consultants and nurses and the medication she's given thanks.

"why would you dismiss lived experience?"

i will tell you why.
Example.

The first line treatment in the UK in most centres for pediatric Crohn's disease is exclusive enteral nutrition - an 8 week liquid diet. Mostly, the patient starts on an immune suppressants medication at the same time which gradually kicks in over the 8 weeks.

There IS good evidence that EEN induces remission in many children with Crohn's. It doesn't work well for ulcerative colitis though, and it isn't a cure for anyone.

My daughter did brilliantly on EEN and had a 2 year period of remission thereafter. Her friend who has Crohn's found EEN didn't work at all and had to have 2 rounds of steroids and move straight on to biologic meds.

This doesn't mean that my daughter's friend didn't do EEN properly. It means that Crohn's is an individual disease.

If I were to tell my daughter's friend that we cured her Crohn's by doing EEN and she should do the same, I would be a) incorrect - we induced a remission, we didn't effect a cure and b) it's irrelevant to her as it didn't work for her, DESPITE it being our "lived experience" of the same condition that it does work.

Lived experience of an improvement in a completely different condition that shares the feature of "digestive issues" is of no use whatsoever. It's like saying paracetamol cured my headache so it will cure your brain tumour.

@Deebee90 well at least nobody I know on fb comes out with airy fairy clap trap to me directly anymore so that’s something.

I think personally it’s because it’s so variable , I know a few people that have Crohn’s and have never needed surgery etc and are fine with a super healthy high fibre diet and the flip side is people die from it when their disease is severe

It’s not demonising people who do things differently. It’s important to not take medical advice from lay point. Case in point - IBS is not comparable to IBD.

Of course drinking more water, eating less processed food and sugar etc is helpful for the human body. There’s a difference between saying “oh this helped me” and saying “going gluten free cured my disease”.

Either way, I don’t see that your lived experience is comparable when the health process is so hugely different. It’s apples and oranges.

FWIW, I’ve recently overhauled my diet and way of living but my health hasn’t improved. It won’t improve. I do feel less sluggish and bloated and have lost weight which is good for me but not for my disease.

But why would anyone give advice to someone with a condition they know nothing about? That’s the part I don’t understand. You wouldn’t assume the person’s medical specialist knows less than you do. And yet some people do seem to think that’s the case!

(edited for clarity)

I've suffered from IBS (I'm 3 days into a bout right now - the stress of my dog dying suddenly on Thursday is clearly the trigger) and chronic insomnia.

If I had a quid for every time I've heard "Have you tried..."

A McDonald's goes in one end and out of the other. No issues. That can't be said for so many clean foods.

I am Type 1 diabetic. I was seeing a physiotherapist for a back problem, she is also an alternative health practitioner. I was face down on her table and she poked (ouch ) the CGM sensor that was in the back of my arm and said "What's that?". I said that it was to check my blood glucose levels.

"That's your own fault" said she. I said "I'm not having that, I've been T1 since I was two years old and there is nothing anybody could have done to prevent it, it's an autoimmune condition". She then came out with "Well, if you didn't eat carbs and took my drops that would get your Langerhans islet cells [so she did know something about diabetes] working again you wouldn't need to inject". No amount of me saying it doesn't work like that had her veering off the course she was on. There was mention of cinnamon.

I hear you, OP and PPs.

@Worriedaboutrapecourts could you report her to her governing body? That's absolutely disgusting from a registered medical professional.

And there are times when my daughter has been so poorly she has barely eaten for weeks.
Quite frankly at that point if she fancies a maccies she gets a maccies.
Any food is better than no food at that point.
Watching your child become a shell of them selves while well meaning (god I hate that phrase) wankers tell you that if you did your illing better you'd be cured has made my blood boil at times.
If I could cure this for her with some cbd oil and some wilted spinach do you honestly think I'm such a shit parent I wouldn't have bothered?

Then you get the people who refuse to believe your condition (coeliac disease in my case) really exists and think people just claim to have it for attention or special treatment. I think my gastro consultant may know more about my test results than your cousin's mate's brother down the pub.

If people talk about their health and illnesses it is not surprising that people will try to help. MIT being experts, their advice may well be wrong/ bonkers. Maybe it is better not to share your health situation with so many people?

When I had cancer I cut out 11 “helpful” people who sent ‘I know this might not help but I couldn’t live with myself if I didn’t pass it on…’ bollocks emails about how ‘big pharma’ was hiding the fact that mangoes cured cancer.

Yep, that’s all I needed. No need for an operation, chemo or immunotherapy at all. Just a dozen mangoes a day and I’d be sorted.

Fucking idiots. Not to mention bloody dangerous idiots if anyone ever believes them and ignores medical advice to have their mangoes instead

I’m one of those terribly annoying people who can “cure” my psoriasis with (severe and boring) diet changes.

I’d still be covered in it if I listened to professionals only.

You need to understand professionals abide by governing bodies. They can ONLY give advice that has been clinically researched.

Clinical research costs a lot of money.