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?

@AMillionPeopleCheering - yes, I would. There was a lovely thread on here years ago when I was first diagnosed and I found it so helpful, but it fizzled out.

Apparently stopping all diet fizzy drinks will cure my MS. I don't drink diet fizzy drinks!

Did you read any of what has been written?

Try doing ten deep breaths a day instead @Toddlerteaplease ... My friend was certain this would cure my genetic condition

I've set up a thread for IBD support and general chat.

www.mumsnet.com/talk/autoimmune_disease/5099190-ibd-support-thread

I was told that breathing thought my nose would cure my asthma. It's genetic.

Not saying I've cured anything - and there's certainly nothing 'magical' about my diet - just simple, healthy eating. Are you always this tetchy?

That's all by the by... regardless of what the 'condition' actually is, some people will have successfully trialled certain treatments that may not be on certain 'experts' radars. No harm in acknowledging that these people may be onto something.

I have UC and at one point was having infusions which cost around £1700 a treatment, someone tried telling me Juice plus would cure me. I think I said, I'm sure if it worked the NHS would prescribe it and save themselves some cash
😂

A homeopath in our family told me not to have a hip replacement.

I’m glad I ignored them- it’s given me my life back.

I had my large intestine removed/ileostomy 5 yr ago and with regards to the UC I wish I'd had it done sooner. If anyone is facing the prospect, it really has made a massive difference to my quality of life.

I guess if I'd just tried that juice plus I wouldn't have needed it though 🤭

Im currently undergoing tests for whats been causing me to shit all the time for nearly two years. First FIT test was for bowel cancer which was negative, Second FIT test was sent off on Monday Another poo test was taken into the docs on Tuesday and im having blood tests next week.

ANY food seems to set it off . ive tried everything. After struggling for a year to get an appointment with my original shit GP surgery i changed to another surgery and i cant fault the care i have had from them,

Many people have no idea that IBS and IBD are entirely different conditions with entirely different causes

Relaxation, therapy and avoiding trigger foods may help IBS, but IBD is an autoimmune reaction which, in not particularly extreme cases, results in colectomies and stomas

Also people need to learn the difference between cured and remission

Pleased would you mind telling more?

I have uc. I am fed up after 18 years of being afraid to leave the house because I will have am accident.

My life revolves around shit and I am so exhausted from it. The guilt of not going on holiday with my family, meals out, days out, anything!

Why is it better for you now, you can eat whatever? Less pain? More freedom?

I would really appreciate your comments x

I'm not the poster but my son had an ileo almost 3 years ago. His gastros were adamantly opposed to the extent of ringing me the day of the operation and begging me to give them more time. The only reason they could give me was he might get adhesions. Well, he did, 2 days after the operation but a small surgery and we were back home. They did wait longer than I liked because it might have been an ileus but I understood that reason.

It's the best decision we ever made for him. He's independent with his care (he's ASD and intellectually impaired) we no longer have to do time-consuming undignified bowel care which he hated and life is much simpler for him.

There's less pain for sure.

Same!

Apparently my autism and arthritis can be cured with expensive MLM aloe.

Is that true? More people have cancer since the covid jabs?

If I was facing having my colon or part of intestine removed you bet I would try EVERY diet possible before that! Carnivore is one that some people report major improvements on and is totally against mainstream medical advice.

You think people don't? Doctors do not recommend such surgery lightly.

Please can you explain why a Carnivore diet will help with an autoimmune condition? Do you recommend it to people suffering from other autoimmune conditions, or just ones that affect the digestive tract? IBD is not IBS, and is not caused by diet.

Everyone knows how I should manage my own diabetes better than me.

Noooooo waaaaaay, reeeeeally?

You really think people facing this kind of surgery haven't tried every thing out there?

They just woke up one day with IBD or UC and said, I know, remove half my colon - I won't bother to try any of the options before I commit to this decision.

Fad diets are always touted as the latest cure. There's even science to show the "Carnivore Diet" cannot cure anyone.... https://crohnsandcolitisdietitians.com/is-the-carnivore-diet-good-for-ulcerative-colitis/

@ApplePippa @PeonySeasons

Yes I really think people have not tried before the surgery. It is against mainstream advice.

Really recommend you watching this video. The guy whose video is being commented on vy a doctor already had a surgery, years before he found out about carnivore.

Humans were never designed to be carnivores.

"It is against mainstream advice"

I think I will stick to "mainstream advice" thanks. I've tried many things over the years, and the "mainstream advice" is the only thing that's helped get my UC into remission and kept it there for the last seven years. I had ten years of hell before that. I'll take that over some random on YouTube.

It may surprise you to know that my gastroenterologist has fully supported trying different things over the years. When you live with a lifelong incurable disease, doctors do recognise that you know a lot about it, and what best helps you.

As a Crohn’s sufferer YANBU, OP - and I can see a few people on this thread are determined to prove your point for you. IBD is not curable with a particular diet (and in fact isn’t curable at all).