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?

I absolutely hear you OP. I think it’s because ‘inflammation’ is trendy amongst ‘wellness’ individuals who are often at the peak of the Dunning-Kruger curve. As IBD literally has inflammatory in the name all these lay people think they are qualified to speak about a complex autoimmune disease.

Sadly though I also think it’s somewhat generalised across all chronic disease. The amount of shit suggested to my SIL when she was diagnosed with cancer was unbelievable.

You have my sympathies @MumofCrohnie. My 11yo son has Crohn's and, believe me, I have heard it all. Unfortunately he has OCD as well, which contributes to a very poor relationship with food, so my eye rolls are virtually in the next postcode as I listen to diet advice from people who really haven't got a clue. I honestly don't care if they're 'well meaning'. I just want them to mind their own business - which is what I do when I find out that someone has a condition I know feck all about. I sympathise, but I don't give advice. And don't get me started on the people with IBS who think it's the same thing ...

I have chronic, severe cholinergic and spontaneous urticaria
The amount of people
"Oh I get heat rash"
"Have you tried an antihistamine?"

No, I inject myself monthly rather than pop a daily antihistamine obviously

I think this is a bit like victim blaming, so many people think if you just tried a little harder you'd be able to cure it all. There's also the fact vulnerable people like us are easy to exploit out of our desperation.

IBD is definitely highly heritable. I have some shit gene which predisposes me to this and a rheumatic autoimmune condition. There's definitely some weird connection to nicotine that I do buy into. A high number of people on some IBD groups I'm part of used to smoke, stopped and then developed IBD; it's very weird.

Show them the new research and ask how juice plus or sage burning or whatever latest the bollocks is, changes your DNA?
https://www.imperial.ac.uk/news/253914/major-cause-inflammatory-bowel-disease-discovered/

Agree, it can be frustrating. Also, I agree most people are well meaning and perhaps, at worse, being a bit thoughtless. I don't expect people to understand the ins and outs of Crohn's or the debates about what causes it, or what minimises symptoms or what the best response to it is. So feel free to have a moan with fellow posters with bum issues. However, for your sanity, try to be less engaged with the 'helpful' suggestions.

My personal bugbear BTW is when people ask, "If you eat egg (something that exacerbates mine) what happens to you?" As this usually happens when eating out, if I'm feeling particularly wicked, I will tell them, in great detail 🤣

I keep having doctors suggest paracetamol...even though I have nerve blocks every 3 months and the preventatives and triptans don't do much

About 15 years ago a good friend was diagnosed with a brain tumour.

His daughter, a great believer in alternatives, found this 'wonderful' man who could provide her father with all the information he needed to cure him of the tumour.

The 'cure' required you to follow a diet that was created especially for each individual patient.

This, according to the daughter, 'amazing man', apparently, the only person in the world who knew how this miracle diet worked, was prepared to share it with her father, funnily, enough at the cost of several thousand pounds.

There's always someone who knows 'better' than everyone else.

My son has crohns [ diagnosed when he was 8 ]. He is now an adult, but we have had the whole "you should try this, that, the other" as they know [ don't they always?] someone who cured their crohns that way!!

People also seem to think that crohns is just food related, so cut out that food and you will be cured!
Fibre makes his symptoms worse, so he eats mainly a "white" diet, but again, these people with no medical knowledge, know better and say he should be eating high fibre, and by eating white meals that is the cause of his crohns. If only life was that simple.

Crohns is part of the inflammatory bowel disease [ IBD ], and can never be cured, it is for life.

Maybe in some instances, these people DO know better? Having made changes to their lifestyle/eating habits and actually seeing the results of that. Why would you dismiss somebody's lived experience?
I recently gave up caffeine, sugar, UPFs, started eating more protein, and drinking more water... my health - including my IBS - has improved beyond measure. I have also developed a really good understanding myself of how foods interact/metabolise with certain medications - official literature for which I haven't see anywhere - again, based on my own experience.
If you're happy only following the official line on things, fill your boots. But I wouldn't demonise people who choose to do things differently.

I totally hear you. I feel like it's definitely got worse since Covid. I work in cancer research and the number of patients we've had recently decline standard treatment in favour of ozone or some other 'natural therapy' is scary. The rise of tik tok 'experts' and their snake oil needs to be stopped.

This is exactly it. I am sure. It tells us about their insecurities really.

Doesn't mean it isn't fucking awful to be on the receiving end of "advice" that trivialises serious illness though.

IBS is quite simply nothing like IBD /Crohn's though.

if it was that simple people wouldn't have devastating surgery and take medication which can have quite distressing side effects.

They are complex conditions that people know a little about and think they know enough about them (it just poo, diarrhea and a bit of stomach ache isn't it? 🤔) to offer advice. I had no idea what these types of conditions were really all about until my niece was diagnosed with UC.

Having lived through that and the condition she has now been left in by the "specialists" I will offer just one piece of advice. Read up on long term steroid use and if/when her condition progresses and if she is on steroids look at if, in time, a planned colostomy/ileostomy might be in her best interests.

My niece had an emergency ileostomy in her late 20s and now has a stoma. It was touch and go for a bit and she was seriously ill due to the circumstances of the emergency, but now she has recovered it has transformed her life for the better - she can go places and do things she could never do with UC, she says it is like getting her life back.

But, and this is the serious part, more serious than the stoma, she has been left with a permanent steroid dependency that can be fatal. The steroids she takes to stay alive also suppress her immune systems and if she is ill/run down, regardless of how carefully manages her steroids she can get very ill very quickly, needs to inject herself with steroids and call an ambulance.

So far this year she has been rushed to hospital 3 times, twice she has collapsed and needed resuscitated, once we nearly lost her. She didn't know this was a risk of using steroids for too long, the consultant never mentioned it or gave her choices when prescribing them for so long. She recently met a nurse with a stoma who said she had hers done privately as she knew/feared the NHS would leave it too long and she didn't want to take the risk

Sorry if that all sounds a bit scary, but we wish we had known the risk.

I have ulcerative colitis and chronic vestibular migraine. Barely a week goes by without someone saying 'Have you tried....?' and my friend is convinced that her (unregistered) hypnotherapist, who also charges her a small fortune for random supplements and is a vociferous conspiracy theorist, would be able to reverse both in one session.

Someone once told me that you'll be fine if you just take your epilepsy medication. My friends daughter has drug resistant epilepsy. And then there's the side effects. (I took an epilepsy medication for migraine for some time. I came off it because some of the side effects were unbearable. I now have problems with my ears because of it)

What diseases have you cured with your magical diet then?

IBS is frequently affected by your diet, yes, and I know for me it's wheat, yeast and the worst of all are peas and peanuts (or white beer) - instantaneous diarrhoea. That doesn't mean it's the same for the next person with IBS, especially if they have the constipated variety rather than the liquid shits one.

Random advice can be a pain, but people generally mean well. The thing that really, really boils my piss are GPs (and the occasional consultant), who know fuck all about your or your child's condition yet insist on giving you incorrect advice and sometimes even make you feel like shit. It gives me the rage, but if you try to give them (well documented advice from reliable sources) you are called non compliant or argumentative.

IBS and IBD are VERY different conditions and it is ok you don't know the difference, but not OK to give advice when you don't know the difference.

Yes, I know one person through a fellowship. I'm in who I am 1 on 1 with as her support for her.

I have to remember not to talk about health with her as our she goes on and on about this woman, I should see for testing on allergies, etc.

I have had chronic IBS C + D all my life. My diagnosis of fibromyalgia through C-PTSD has made it worse. The IBS C + D was inborn.

I found out a few years ago after a colononoscopy that the reason for it was a tortuous colon (it's loopy in other words) and doesn't sit properly in my stomach.

No amount of allergy testing, etc, is going to fix it. It does what it wants to do. I don't get warnings for needing the toilet because of. Hey, allergy testing will cure a twisted loopy colon, she says 🙄

Of course, she is the same over C-PTSD and fibromyalgia. All would be cured with allergy testing FFS.

I've spoken to my Dr about it. He just smiled and said "Ah one of those people."

She reckoned her dietary changes and had cured her rheumatoid arthritis until she had a major flare-up. Because she stopped her meds, she was hospitalised.

She doesn't talk much about it now. If she brings it up, I change the subject

I'm an ulcerative colitis sufferer, and I feel your pain OP. Despite many well meaning people over the years giving me dietary advice, the only thing that has been succesful in getting my UC into remission is immuosuppressants. Because it is caused by my immune system attacking me.

I think part of the problem is because IBD affects the digestive system, so there is an automatic assumption that is is caused by diet.

Just smile and nod, and then quietly ignore.

I can sympathise as I have two auto immune diseases.

My immune system doesn't need boosted infact I take 2 injections a week to suppress my immune system.

People without the condition always know best.

Fwiw, some research suggested that exercise could improve Crohn's (bearing in mind that it is important to rest during flare-ups) and my DS who has quite severe illness took up mountain biking and started going to the gym regularly. He hasn't had a flare-up for several years and has been taken off his medications for the moment (to all the 'natural cures' people - the doctors don't want their patients on strong medication any more than the patients want to be on them).

I don't know if it's the exercise, or just the natural progress of a very complex condition, but he's keeping the exercise up - it also improves his mood. He isn't cured, and he has quite severe scarring from a series of very nasty flare-ups, but at the moment, he is symptom free, and I'll take that.

I hope your daughter's condition stabilises, OP.

Yep.

@MumofCrohnie its very annoying and happens with all chronic illnesses/disabilities.

We have M.E, fibro, POTS, ADHD, autism (PDA) and hEDS and depression/complex ptsd in this household, and we all get it.

Prayer, kafir, weed, diet, exercise, laughter yoga, yoga, CBD oil, cleaning more or less, acupuncture, massage, Homeopathy, weight loss, therapy (for the physical illnesses) are all better for every situation than anything recommended by any doctor ever (all of which are just making everything worse obviously).

I also enjoy all the things that have apparently caused the illnesses. Dishwasher tablets was a good suggestion. I also really enjoyed salad cream as a cause of depression.

Yep I know. I have UC and have had it 10 years now. First thing I’m asked am I vaxxed 🤣. Or have I tried juice plus or weed. Forever getting told it’s my diet that caused it. Honestly the list is endless. If you haven’t got it then back the fuck off.