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?

That being said, I can't think of a single illness that would be made worse by clean eating

Well my friend who has Crohn's cant manage wholewheat bread or high-fibre anything but manages much better with the sliced white stuff.

Yes. Low residue diet. Simple foods like white bread, pasta, chicken, rice krispies, tuna, bananas. All foods recommended before a colonoscopy or during a flare because they are so easy to digest. I think of it as foods you'd give a baby when they're are weaning. Soft, easy to chew and safe.

Changing your diet as the cure for everything is really tedious. Like you, sadly my stomach can't cope with a lot of fibre. The more vegetables and wholegrains I eat, the more I suffer. Somebody will no doubt tell us we have some sort of imbalance in our guts and all we need is more probiotics and apple cider vinegar.

I have two chronic illnesses so I've heard it a lot over the years. I've noticed that the suggestions tend to align with whatever the latest health food trends are. So there was the manuka honey era, aloe vera era, coconut oil era, turmeric era, cbd era, and now I think we are entering the nootropic era. Maybe there are shreds of truth in some of the claims but they're massively inflated by the companies/individuals selling the products. None of these products is regulated because they're classed as 'food', so they claim whatever they like. People who buy them often talk about Big Pharma, not realising they're just lining the pockets of an entity that is arguably even more questionable.

This is exactly me to.
i to get fed up with the misguided advice from others .
If only they did work eh .

No cure just management with the drugs prescribed tho doesn't stop the flare ups which are absolutely terrible.

That sounds really rough OP. It's hard to smile and nod when people are making wild suggestions for a condition they dont have and dont specialise in. Especially as the sufferer, you've probably read all the research that rules out many non-medical approaches. My son has non verbal autism and someone I met once, a professional nutritionist, immediately told me at length about a gluten free diet would help him to talk within just a few months. 😐I found it quite funny at the time but also depressing as I then HAD to go on a long Google trail of research - just incase! I discovered that research has completely ruled out a gluten free diet helping autistic children to speak! When people are desperate to try anything it can be quite sad, even against your better judgement it gets you thinking 'maybe?!' And then of course, not.

Oh I remember the manuka honey era - nearly gave myself a stomach ulcer.trying that one!

I also cant eat fibrous things during a flare. It is the equivalent to running sandpaper over those internal bowel ulcers...

I did think about that but couldn't find a governing body. She is listed in the Chartered Society of Physiotherapy but only mentions the physiotherapy on their website, not the alternative stuff.

Imagine having terminal cancer, which you know is terminal, and then having everyone suggest things from positive thinking, visualisation, inappropriate and not relevant surgical or pharmaceutical interventions they read about in the paper which are for a different type of cancer, about everyone else's curable cancer, about how they should be trying to achieve things with cancer, run marathons, write a book, do amazing things...I do not have terminal cancer myself, but having watched people that do, I'm astonished at what people say to them. I think it's a mixture of not knowing what to say, not quite believing the truth or wanting it to be different and trying to show they care, that's the kind interpretation anyway.

It’s the same for infertility. “Just relax and you’ll get pregnant”. “Have you tried…”. “I know someone who…” just ignore them.

The problem is that IBD is such a hard nut to crack - even those who have found some respite through treatments do so after a long and tortuous process of trial and error, and are still subject to relapses. This leaves the door open for the cranks and conspiracy theorists.

Just ignore them - good luck!

Very true. I have greatly reduced my pain from migraines by a small (and free!) change which none of the medical experts every alluded to. I discovered it by accident and then when I googled I found random chat groups of migraine sufferers that have noticed the same thing. Sure, definitely doesn't work in all - or maybe even most - cases but would have been nice if someone had suggested it to me before. It would have saved me years of debilitating migraines.

Doctors are experts in their field and can give excellent advice based on research. This is very valuable. However, that doesn't mean that lifestyle or diet changes are worthless. If you try it and it doesn't work, fair enough, but many people do notice an improvement of their symptoms and that's fair enough, too.

Edited to add: unsolicited sharing of advice is a different issue. I can see how in many cases it would be unwelcome.

Oh yes this is the most offensive level of awful advice

I had a friend with terminal cancer who was a bit in the public eye and the amount of stupid advice he would get from strangers was infuriating. He handled it with such grace, I am sure I would have snapped eventually!

OMG yes. The world and his wife has some pet theory.

However, I can say for certain that my DD put her Crohns into remission by the simple method of doing what her doctors told her and taking her medication.

Amazing!

Oh yes, we had that. DH is infertile and I had women I know offering to carry a baby for me (my uterus works just fine thanks), suggesting foods to help me "catch", all the "relax and it'll happen" shite.

Yup. All well known cures for male infertility caused due to being a very premature baby and cryptorchidism which wasn't fixed until it was much too late and it was all cooked (NHS guidance in the 80s winning there!). Literally not a single sperm capable of impregnation. Not one. But hey, if I eat pineapple it'll fix the alkalinity of my vaginal or something.

Yes, it's the unsolicited sharing that is the issue.

If I want to find out what lifestyle changes might help I will go researching, or ask people who have experienced my condition or a similar one .

Unsolicited advice minimises my condition and implies it is a lifestyle condition. It's not, it's genetic and I have had it my whole life. I probably wasn't swigging coke and mainlining McDonald's as a baby. Unsolicited advice also implies I am currently unhealthy, which is actually very rude when you think about it.

It’s not just Crohn’s, it’s all chronic illnesses. Use it as a chance to educate.

With respect you have just done it!

I have ulcerative colitis. If I each veg, any veg no matter how well cooked, any salad, any fruit, nuts, certain protein like salmon, dairy, and loads more, I end up poorly.

I don’t mean a bit of tummy ache and glued to the toilet, I mean very very unwell pumped with steroids and looking at the very real prospect of loosing my bowels.

I live on white bread and chicken. Every Single Day.

I cook lovely meals, all from scratch to watch the rest of my family eat them.

That must be really tough. And then to have ignorant people lecturing you on top of that !

A friend phoned recently to tell me her mum (74) has been diagnosed with Motor Neurone disease. She was so upset, very understandably, and worried for her mum's future, especially latter stages, and her mum has mentionned that she will choose assisted dying abroad.

And then she said that perhaps it was due to the Covid vaccine, because her mum has the jab and several boosters. I was amazed and lost for words.

Actually loosing my bowel gave me a new life, Bring on the sun. Its really not the end of the world if it has to be done. It's such a vile illness.

I'm very sorry to hear about your health difficulties. I'm glad you've found food that you can tolerate. But that actually proves my point - diet can be very important. If someone is eating the wrong foods, their health can deteriorate.

Chicken and bread is a very restrictive diet, I am very sorry that you can't tolerate anything else, but it would fit into what I mean when saying 'clean' eating. I imagine if someone in your position eats mountains of sugar, chemical sweeteners, and transfats every day then it wouldn't do your condition any good.

I perhaps made a mistake by using the phrase 'clean eating'. It's quite a loaded term that different people define in different ways. I didn't mean that if you just ate some vegetables you'd be cured.

Oh and my child's chronic illness isn't someone else's learning opportunity.
She shouldn't have to educate people
Educate yourselves without expecting other people to share their confidential medical information with you so you can learn.

Oh and my child's chronic illness isn't someone else's learning opportunity.
She shouldn't have to educate people

Totally agree. No one , especially a child, should have any responsibility or expectation of providing a learning opportunity for anyone else when it comes to their health. That is so toxic.

Yep, had this lots of times. Whilst laying on sofa eating a snack got told ‘no wonder you’ve got Crohns, you don’t sit up to eat!’….

Me: I have an autoimmune disease.

Person: You need to boost your immune system.

Me: No, I really don't.

Other person: You need to cut out <every fruit and vegetable, carb or fat on the fucking planet>

Another person: You need to do Keto

Someone else: Read Why We Get Fat

A Vegan: Be Kind to the Animals and you'll get better❤

Someone else: You need to make your blood alkaline (even though that would mean I'd die). To do that, you need to eliminate all acids from your diet and consume Apple Cider Vinegar three times a day

Me, biting: You mean the stuff that consists of Acetic fucking Acid?

<Blank faced pause> Look <pastes quote from the Internet> 'The pH of apple cider vinegar is about 2-3, which is considered mildly acidic. (pH is a measure of acidity, with 1 being the most acidic and 7 being neutral.)'

Me, getting more annoyed that some fucker has actually posted this on the internet for the easily convinced by sciency-sounding words to repeat this: Umm, a pH value of 2-3 is not mild - and how does consuming an acid make an alkaline?

Oh, well, once it hits the stomach, it's transformed...

Me: When it meets Hydrochloric Acid with a pH of about 1, you mean?

Another person: Eat wholefoods, everybody eats UPFs and they cause everything wrong in the world

Someone else: I know a person (on Instagram) who cured her illness by being a raw food juicer vegan and breathertarian. I'd tag you into her posts, but she's dead now.

A Man Enters the Room: You need to exercise and eat less. Don't be a foolish woman and believe what the doctors tell you, all the medication they prescribe is Big Pharma wanting to kill you for profit. <Goes off on rant about Bill Gates, birds, Soros and about how discusting(sp) it is that women pollute their bodies with drugs and food whilst waiting for their dealer to drop off>

Another Vegan: you drink milk, don't you? Cut out the revolting mammary secretions and you will be healed through the power of cashews blended with nutritional yeast. Watch Earthlings and you'll see.

Somebody parachuted in from 2002: It's candida overgrowth. Don't eat anything that'll feed the yeast. I like sourdough.

Somebody parachuted in from 1937 Central Europe: I think that nature should be allowed to take its course. None of these conditions existed until we started fannying around giving people treatment for stuff like this. It's a drain on the State and Hard Working Families, the NHS is BROKEN, we should stop throwing good money after bad.

Someone stepping out from the safety of Candy Crush: Who said that you had an illness? My Auntie had terrible trouble like that when I was a girl, nobody ever called it an illness, she just had trouble with her nerves and was fine once she just got on with things. Died when she was 57, but never complained once after she was told to stop trying to get attention.

Complete stoner drifts in: What you need is cannabis. It's a conspiracy, Big Pharma knows this is the cure, but they're keeping it a secret.

Somebody you went to school with thirty years ago and was a complete dick to you: Hey, Hun, I can help you, just have a look at the shots/drops to put in your drink/essential oils I'm selling in my multimillion business as an empowered Girl Boss - here's a photo of me in a rented sports car parked outside a hotel to show how rich I am from selling it. I'm at a craft fair in boring-as-fuck-village-hall on Tuesday. You'll find me next to the lady who crochets toilet roll covers. <proceeds to spam your socials with stuff for the next five years>

Somebody waking up now after last reading a feature in the Daily Mail at the dentist sometime around 1993: You need to take vitamins. Wouldn't hurt for you to lose weight, either - the Cabbage Soup Diet works really well.

Your standard, everyday moron: You've been vaccinated, haven't you?