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First-in-human implantation of bionic device to halt Crohn's disease (2023) (florey.edu.au)
241 points by deluxeroyale 7 months ago | hide | past | favorite | 123 comments



I have Crohn’s but am one of the lucky 20% who is in long-term remission without surgery and without the more problematic drug therapies - thus far!

But if this works as well as hoped it will bring a lot of peace of mind that if I do ever need surgery, I won’t be going back in for more every few years.

Medical research is awesome, for all its inefficiencies.


How did you do it?


No idea.

Taken mesalazine as directed by my doctor for nearly 30 years, and been extremely lucky.

(I’ve had to take predisone three times for flare ups, but not for more than 20 years. As I said, extremely lucky).


Which drugs are you talking about? Pretty much all the biologics for CD have amazingly positive safety profiles…


My wife is on a biologic for psoriatic arthritis. We are scared of the long term impacts around cancer. Within 8 years of being on various biologics she was diagnosed with cancer late last year in her early 40s. No family history of cancer.

We have no evidence biologics caused it but the fact that they reduce t-cell activity, it is definitely plausible. That is why all of them disclose the blanket cancer risks. She is not currently cancer free but we are concerned that the next one will be something with a much worse 5 year outlook

We would rather her not be on them but they are the best thing that currently exists.


Rinvoq?


That is one she has been on in the past. She has gone thru about 8 trying to find one that works best for her.

She is currently on tremfya


Thanks for the response. I have a family member about to start on Rinvoq and cancer risk is weighing on my mind as well.


I've been on Rinvoq since last summer and I delayed getting on it for that very reason. Reading the risks was really not making me feel well, after I've already taken multiple other medications. The worst part is, that it doesn't work as perfectly as some previous meds have. But at least I can enjoy eating out occasionally again without much worry and can travel again. That quality of life improvement puts it into a slightly better perspective again.


I am probably sensitive because my mom passed away due to stroke prior to my wife being on Rinvoq but that was a bigger concern for me when my wife went on it. Learn to identify stroke symptoms.


All of them increase risk of cancer (EDIT: upon further review, maybe not all of them? Or maybe just with combination therapy?) and severe infection. Many of the biologics are also quite new, and the long term effects of taking them are not well understood. Plus, in some cases they don't work well enough alone and so multiple drugs are required (a biologic in combination with something like methotrexate or azathioprine is typical), which further increases risks. Anecdotally, I know of a couple people who had bizarre and severe immune reactions to biologics that left doctors baffled, so that's something that can also occur, apparently.

Also some people are just prescribed steroids like prednisone for whatever reason, which has some pretty negative long term effects.


Untreated bowel inflammation also increases your risk of cancer significantly. If cancer risk is on the table either way, might as well take the drugs that increase your quality of life in the meantime :)

Plus—you have a chance of beating cancer. But a colectomy is a one-way trip!

(Prednisone will absolutely fuck you up long-term though. No cancer risk afaik, but osteoporosis risk is through the roof. I've heard of UC patients who needed joint replacements in their 30s from long-term steroid use...)


At least for Ulcerative Colitis, there are safe drugs that are much less effective (mesalamine) but the strong effective drugs all come with long-term cancer risks (prednisone, remicaid, entyvio, etc), as you say. The newer drugs like entyvio are generally less risky than the older ones, mostly on account of being more targeted, but the risk is still significant. I imagine the situation is similar for CD.


Becareful with Stelara. The body reuses the same inflammatory cytokine group that is the target in the lungs to fight off infection. So, your lungs can’t fight infection very well on Stelara small issues can very quickly become life threatening.

I got Pneumonia that turned into Sepsis in about 60 hours. It happened so fast that the doctors brought in an addiction specialist. The only other time they’ve seen this is when drunks pass out and aspirate on their vomit. (Crohn’s doesn’t let me drink, so we can rule that out…) After days of studies, we found the warning label on Stelara about the elevated risk of lung infections. My care team reached out the Janssen and confirmed it. After about 4 days of IV antibiotics, I was sent home to continue on oral antibiotics.

Still, if I die from something like this, it’s still worth it to take these biologics. At least I lived a much better life for a while thanks them. The side effects can be life threatening, but the ability to have a life is worth it.

TLDR: On Stelara, I went from Pneumonia to Sepsis in about 60 hours while taking oral antibiotics. The warnings on the labels of the biologics are serious - and the side effects can be life threatening.


I had a severe anaphylactic reaction to Remicade, it was a terrifying experience. The doctor had seen it a few times before so apparently it's not uncommon.


On your first injection or a little while in?


It was on my second infusion. Started having trouble breathing about a minute in.


Your statements are true, but please present this information with nuance. Yes you have an increased risk of cancer, but it's a small percentage and not a guarantee. Untreated bowel disease is guaranteed to have side effects, horrible QoL, and a much higher risk of cancer than medications.

Prednisone is the one exception though, unless life is completely unlivable or you have a significant chance of death (typically from perforation) I would avoid it.


I think that the benefit of the medication is clear, or else why would anyone take it? I definitely do not want to imply that I don't think the cost-benefit analysis comes out in favor of taking the medication. I just wanted to underscore how difficult of a situation it is to have a disease that necessitates the use of these drugs.


> Many of the biologics are also quite new, and the long term effects of taking them are not well understood.

It's interesting that this has become a talking point now for basically any new therapy. As soon as something new and promising comes out, we "don't understand the long-term effects" -- but this discounts (1) the years and years of research and development that go into them (2) the decades of research and development that has gone into the underlying platforms (3) the trials that have happened and (4) the known and understood negative effects of the disease being treated.

The FDA tends not to yolo new therapies.

We see this with GLP-1's all the time. They have side-effects, what will happen later, etc -- as though obesity doesn't have side-effects, and predispose you to every disease known to man?

I feel like this all started during the COVID vaccine hysteria, but maybe it was always there and I wasn't paying attention? I feel like a decade ago when a new treatment for a chronic disease came out people threw themselves at it.

I guess maybe as a concrete follow-up question: how many years would it take before you felt comfortable with it, and why that number specifically? 10? 20? 30?


I'm not trying to discourage the use of these drugs. In fact, I would absolutely use them if I required them- their potential benefits outweigh the risks. But I also must admit that I would still feel more than a bit nervous about it.

I also should point out that "long term effects of taking them are not well understood" isn't my personal opinion per se, it's something I've read in the literature about these drugs, including relatively recent research (I wish I had a good source that summarizes this point, but I don't have one on hand). Concern about long term effects is real and legitimate, and pre-dates concern about COVID-19 vaccines (another instance where I believe the benefit far outweighs the risk, for the record). There must always be a balance between spending time testing vs. getting a pharmaceutical deployed. It would be absurd to imply that we're not making a tradeoff here.


I mean if you’re thinking about the big picture, chronic inflammation increases cancer risk even more.

For corticosteroids, I agree… But that’s not supposed to be used long term and is a bit of an emergency resort.


Not supposed to be used long term, but sometimes they are, I personally know two people who are on corticosteroids long term because nothing else works. You're right though, it's all a calculated risk because untreated disease can be life threatening, in addition to being debilitating.


I’m in the very fortunate position of not having to keep track of the most recent Crohn’s therapies.

However I have been prescribed prednisolone for brief periods in the past when I’ve had active disease, which has a lot of known risks with long term use.

I don’t know if it’s still used much but at one stage my doctor considered prescribing Azathioprine (Imuran), which has some potential nasty side effects and risks.


some of them you have to take with an immunomodulator to suppress the possibility of antibodies, and those increase the risks of lymphoma and some other stuff.


And the immunomodulotors(thiopurine) comes with an 2x risk of skincancer and 3x lymphoma (monotherapy). anti-TNF comes with an 3x associated risk of lymphoma (monotherapy). Combined it’s doubled (6x risk of lymphoma) Integrin Receptor Antagonist are not associated with any increase of cancer.


If so then they are a lesson in how misleading statistics can be.


This paper seems to describe the general strategy:

Neuronal regulation of the gut immune system and neuromodulation for treating inflammatory bowel disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8565205/

It would be incredible if it works, since it would avoid treatment with systemic immunosuppresives which can promote infection/cancer. However maybe there is still a local risk of the above?

I would also be concerned about the implant getting covered in nasty biofilms over time.

If this type of thing works, does that mean that medication that target the nerves might work against inflammatory disease?


> can promote infection/cancer

Note that while TNF inhibitors like adalimumab (Humira) have a black box cancer warning in the US, this was based on assessing a small number of studies early on. We now have more than 20 years of studies and patient registry data, and later studies, including meta-analyses, have concluded that there is no additional risk of cancer with these TNF inhibitors.

E.g. see:

https://pubmed.ncbi.nlm.nih.gov/24361468/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770105/


A co-author of the first study is employed by Humira's maker; the second study was funded by it. Doesn't mean they are wrong, but it does suggest some skepticism is due.


Those were only the first two studies that came up on PubMed. There are a number of studies that support the same conclusions.


Yes but that's one drug, which does increase your risk of infection according to your links. There are other newer drugs for which we don't have 20 years of data.

The best thing is if we could target these drugs to only be activated in areas of active inflammation.


Yes, we have less data on newer drugs, but TNF inhibitors are currently the go-to medication for many autoimmune disorders, including Crohn's and UC.

Infection risk is currently the case with all current medications that act on the immune system. In all cases we are merely suppressing some pathway where the end goal is to reduce the immune response.

ThatMs really the best we can do until we actually identify the causes, and can address that rather than "dialing down" our immune systems.


Yes. My point is that we should try to get the drugs to home to the inflamed regions somehow.


I think most of these claims are BS, but I've met several people who have claimed to heal their own inflammatory diseases through non-medical practice to help regulate their vagus nerve. I know for me, these types of practices seem to help manage my symptoms. So maybe there is some connection.


The vagus nerve sits inside the collarbone right next to the carotid artery. As a doctor told me once, if you're able to physically stimulate your vagus nerve, you need to get to A&E posthaste, lol


Look up vagal maneuvers. Used by a subset of tachycardia patients to reset to a typical heartbeat.

https://en.m.wikipedia.org/wiki/Vagal_maneuver


IIRC there's a stage 2 Test device that uses vagus nerve stimulation through the tongue to attenuate tinnitus:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8120162/

I think it's called the Susan Shore device, and nowadays is the main hope for curing tinnitus to some degree.


What's A&E? Googling only shows the cable network


"Accident & Emergency" - you may know it as the Emergency Room, but it's commonly called A&E in the UK


Accidents & Emergency is what the Brits call the Emergency Room


British for "emergency room."


That’s wishful thinking. Please don’t go off your IBD meds or you will regret it some day.


That makes more sense for IBS (irritable bowel syndrome) than it does for IBD (inflammatory bowel disease). IBS is caused by the gut-brain nervous system acting up due to stress, and vagal maneuvers forcibly turn off the fight-or-flight response from the nervous system. On the other hand, IBD is caused by your immune system attacking itself in the gut, and the T cells aren't really connected to the nervous system in any physiologically relevant way. So your friends were probably talking about IBS, not IBD.


There could still be a link between the nervous system and IBD, too.

When I was diagnosed with UC, the inflammation perfectly correlated with a portion of the colon that was connected to a particular nerve (I can remember which - it was a few years ago by now).

I dismissed it as BS at the time, but a physiologist once asked me where I feel the physical sensation when I am stressed or anxious, and I said my gut. He thought that was very interesting (since I had recently been diagnosed with UC). I thought nothing of it, but maybe there is a link. (My wife, in contrast, feels anxiety and stress as a feeling in her chest.)

More and more, scientific research is pointing towards how all the systems in the body are connected one way or another, so I wouldn't be at all surprised if there is also a link between IBD and the nervous system.


Vagus nerve stimulation can help IBD

> The vagus nerve regulates inflammation and cytokine release through the inflammatory reflex. Recent pilot clinical trials using implantable bioelectronic devices have demonstrated the efficacy of vagus nerve stimulation (VNS) in adult patients with inflammatory bowel diseases (IBD) as an alternative to drug treatments.

https://bioelecmed.biomedcentral.com/articles/10.1186/s42234...


What claims are BS. What did your friends do wrt their vagal nerve


> I would also be concerned about the implant getting covered in nasty biofilms over time.

The implant doesn't necessarily sit inside the gut though does it ? Just somewhere it can ping the relevant nerve.


I don't have the citation for this, but I learned in a class long ago that most implanted devices end up covered in biofilms, it's only a matter of time. Especially if it's plastic. e.g. breast implants, catheters, etc.


Bacterial biofilms? On implanted implants? How do they get there?


Your bodhi is filled with bacterial and archae, if they create a localized stronghold they'll form a protective biofilm.


I highly doubt that this would obviate the need for biologics, but I think it would probably work very well in combination.


> Australia has among the highest incidence of Crohn’s disease in the world

We really need to look at supply chain and environmental factors.


IBDs like Crohn's and Ulcerative Colitis have increased in incidence (controlling for better diagnosis) as countries develop[1] [2]. People in developing countries have a lower rate of incidence, and if they move to developed countries, the incidence remains low. However, their children, born in developed countries, experience the higher rate of incidence. Something about being a child in a developed country increases your chance of developing an IBD

Several theories have been proposed, including hygiene hypothesis, lack of fiber in the diet, and pollution, but finding causality has been hard. Worse yet, nobody knows what causes these illnesses.

It's also interesting to note many food allergies have increased in prevalence in the last 30 years - although the causes for that might be different, they are both GI related auto-immune conditions.

[1] https://www.gastrojournal.org/article/S0016-5085%2811%290016...

[2] https://www.thelancet.com/cms/attachment/1bc07ee3-782c-4670-...

[3] https://pubmed.ncbi.nlm.nih.gov/19917585/


> It's also interesting to note many food allergies have increased in prevalence in the last 30 years

Wonder how much of this is due to the relatively recent trend of having dual incomes with both parents working?

Cause and effect might be hard to tease out but it’s looking like there are some drastic differences in babies that were born early in the pandemic:

> only about 5% of the lockdown babies had developed a food allergy at age one, compared to 22.8% in the pre-COVID group.

> Of the lockdown babies only 17% needed an antibiotic by the age of one. In the pre-pandemic group, 80% of infants had taken antibiotics by 12 months

Can’t find a link to the original study at the moment but here’s a secondary source:

https://news.sky.com/story/covid-19-pandemic-babies-develope...


Breast milk? Or maybe literal live breast feeding? Mouth on mother's skin and all that.


It's all about the gut microbiome


Probably not eating enough dirt early on.


Yeah. And I suspect diet. There has been some speculation that the "safe" levels of herbicide are not actually safe for beneficial gut flora.


> And I suspect diet

Of course, your diet influences your gut health


I should have phrased that better. I meant "the safety of food in one's diet" rather than "the tips of food constituting one's diet".


I know this is contentious, but one factor here that lines up with the timeline you've presented is: vaccines.

Children are given far more of them than adults. People moving from developing countries to developed countries won't receive as many. But if they have kids in a developed country, their kids will get a ton.


I think nicotine can also suppress UC, so smoking rates might also be a factor.


I worked with someone at big name university biomedical informatics department who found out only in their early 30's by emergency health crisis that they had Crohn's. Perhaps with some people it requires an emergency for there to be clinical investigation, or epigenetic conditions silence some pathologies until there is a specific stressor or gene activation.

I sure hope a CRISPR edit treatment comes along to permanently cure some of the serious Crohn subtypes.


I initially wrote this as a reply to a comment by "NotGMan" mentioning fasting/paleo that got flagged. They could have approached the subject more delicately but I believe they have a point.

About 3 years ago I had gut issues so bad I thought I was close to death. NHS couldn't see any problems and were basically telling me I'd gone nuts. They refused to do any further testing.

After a year of suffering I tried a 7 day water-only fast and the pain finally went away. I broke fast with only paleo foods and stayed that way for 6 months. I gradually introduced other foods after that period with the last being gluten about 2 years after the initial fast. I am almost cured, however I will never abuse my gut in the same way again. Less carbs, more salads...

This is just my personal experience of course but I have discovered so many other people with similar gut issues who are also being ignored by their doctors that you can't blame one for wondering if there is a conspiracy at play.

I wouldn't have believed any of this a few years ago but now I have serious doubts in modern medicine's ability to deal with chronic health issues, especially in the gut.

We do eat so many more processed foods (and other things) that it doesn't require that much of a stretch to the imagination that diet is a part of the problem or indeed the root cause.

Lack of openmindedness bothers me immensely and the nature of human biology is under no obligation to fit into tidy boxes for the sake of our understanding. The real world is fuzzy.


Decades ago, about 30% of the people who had celiac disease would waste away and die, especially children. Until a doctor noticed that if the people ate 12 bananas a day they seemed to do better. Of course, 12 bananas a day is a kooky diet, but people who eat 12 bananas a day tend to eat less of everything else, including less bread and gluten and so they would do better. Later science figured out bread was a problem and then eventually identified the specific protein (gluten) that effects people with celiac disease.

I think there are other foods that bother different people, but we haven't managed pin down exactly which foods bother which people. It's a hard problem, but surely there are other cases of "if you just avoid this specific food ingredient, you will recover", just like celiac disease.

So, on the one hand, sharing advice about which diets worked and didn't work can be helpful (like the 12 bananas a day diet). On the other hand, "I tried an unusual diet, which also happens to have a good amount of marketing behind it, and things are better" is one of the most common bits of advice you'll find for many diseases, and the problem is everyone recommends a different diet.

A relative of mine has Chrons disease and was close to death before it was diagnosed, the doctors recommended a junk food diet basically, high calorie foods with almost no fiber, and that's how he eats now and is doing much better. I don't recommend everyone follow the same diet, but for whatever it's worth, eating junk food has helped my relative, true story.

And this is what I mean, there's so much conflicting advice about which diet to try. I can't fault people for trying different diets, because I believe there are many unknown disease, like celiac disease, which can be treated with an exact (but as of yet unknown) diet. I also don't fault people for giving up and not enthusiastically trying every diet-of-the-week that gets suggested, it's tiring. Also, it's notable that the diets with the most marketing tend to be the ones most recommended.


Taking this tangent and riding it: it's well-known that undiagnosed celiac disease in children stunts growth. After diagnosis and transition to a gluten-free diet, there is usually a period of catch-up growth (which unfortunately does not close the gap fully, usually). If there are a bunch of these silent sources of malnutrition, it could - alongside things like poor perinatal care for mothers and children, as well as the various sequelae of America's high level of economic inequality among developed nations - be one piece of the puzzle for why the adult height of Americans has stalled when compared to Europe (which would be an empirical finding and not just gussied-up scientific racism).


I don't recommend everyone follow the same diet, but for whatever it's worth, eating junk food has helped my relative, true story.

Crohn's disease affects each patient differently. Depending on what part of the gut is being attacked [1], different digestive processes are implicated. That will lead to different kinds of foods being potentially problematic (as well as leading to a need for different kinds of supplementation).

The bottom line is: your mileage WILL vary.

(I've had Crohn's for nearly 45 years, since I was an adolescent.)

[1] My doc once told me about a patient he had that was affected in the throat!

ETA: for my personal experience, the one thing I can't eat is whole-kernel corn in any non-trivial quantity. It actually clogs me up. Oddly, popcorn is perfectly fine, as are corn tortillas and the like. It's happened to me twice. The first time I went to the ER and said I thought I had an obstructed bowel, and the admitting nurse said "can't be, if that were the case, you wouldn't be able to walk in yourself". I think that gives some perspective about what kinds of pain you can get used to. Second time it happened, I didn't bother, since there turned out to be nothing the ER docs could do other than monitor me. I just let it work itself out over the course of a couple days.


The "your mileage will vary" part is definitely true, as well as the "incredible what kinds of pain you can get used to". I had 30 cm of my upper intestine removed 12 years ago. Doctors said it was so constricted you couldn't pass a pencil through, but I was still managing to ski double black diamonds two weeks before surgery.

When it comes to fiber in particular, I think what can confuse people is the difference between water soluble fibers like oatmeal, and extremely insoluble "macrofibers" like raw green asparagus, leafy greens, orange pith etc. The former is OK for some, the latter is no-go for everyone AFAIU.

Another curveball is nearly underbaked dough, like you'll find in a lot of commercial bread and rolls, even if it has zero fiber. If you can knead it back into dough with your hands, it might just form a nice lump in your gut as well.

I have the same thing as you with corn, and also with nuts unless eaten with lots of liquids. I think it goes back to the possibility of forming tough paste in the gut.


I wonder if water balance plays a big role. Like, you drink water but it easily gets absorbed by your stomach or small intestine before it gets a chance to work it's way down with the food. Then as the food is passing through, the water dries up. It's as if your body wants the water more than the intestines. Drinking the extra water with the nuts may help because of that? Just spiralling


Have Chron's with stricturing and anything more than a quarter cup of corn, popcorn, pineapple or leafy greens would bring me to my knees in about 5-8 hours. Nuts are a little hit or miss, I need to chew them up really well and not eat them on an empty stomach and I'm good for a few handfuls.

I tell people that if it looks the same coming out as it goes in, I can't have that banging around my guts.

Any fast or junk foods are totally fine since they're mostly low fiber, but high fiber foods are mostly okay, too.

Due to my strictures and the nightmare stories I've read from people online, I specifically eat foods that are mushy or smoothies and soups. Basically, I'm pre-digesting the foods before they're eaten so they're easier to pass through a narrowing intestional wall and it has worked well for years now. Only time I've had issues are when I eat too quickly, too much at once or have one of my problem foods.

I'm also on a biologic, which made all the difference after being untreated for about 6 months, which I wouldn't wish on my worst enemy.


I wonder if that's something I should do. I noticed once or twice if I ate something with pumpkin puree in it, the next day my bowels were heavenly.

Do you have a different reaction to soluble vs insoluble fiber?


No real difference for me. It mostly comes down to quantity, speed and how much it’s broken down by chewing, cooking or blending.


Thank you for taking the time to reply and not just downvoting me. That is enlightening and I'm glad your relative is in better health now.

I'm certainly not suggesting there is a single treatment plan that'll work for everyone. As I said biology is fuzzy and it annoys me when people try to debug health issues like they were pieces of software. Discussing these things openly does help however.


I have chrohns. The diet change recommendation is something we hear often.

For me my doctor recommends a mediterranean diet and to avoid emulsifiers, but it’s definitely not a cure and not universal.

If you go look at chrohns forums you’ll see a lot of experimenting and a lot of different diets because (to my understanding) chrohns has a lot of different and unknown causes.

For me high fiber foods can put me out of commission for the next day, for others it’s the opposite.


Yeah, there was a vegan girl once who heard i ha Crohns' and just would not stop telling me to go vegan. Apparently it had helped her IBD but she seemed incapable of believing that i had tried all that and that eggs and meat were the best diet for me. High protein, high calorie. I'll eat vegetables with make but always well done. If i ate vegan I'd probably be dead in 2 weeks.


>I think there are other foods that bother different people, but we haven't managed pin down exactly which foods bother which people. It's a hard problem

Sounds like a job for a neural net. If people would log all what they eat and how they feel. If the neural net had access to all the components of the foods they are inputting, surely with enough data a pattern would emerge of what common component in what they eat is correlated with worse symptoms.


Not that easy. I have sibo and depending on what I eat and how I eat it, it changes the effects it has on me. Also the amount and frequency. For example, if I have raisins at the start of my meal then I don't see issues, but if I have them at the end of my meal then I do. If I have it here and there then no issues, but if I have it a few meals in a row then it'll give me issues.

And raisins affect me within 20min, but if I were to face something like potatoes or tomatoes then it doesn't give me issues until hours later (after my next meal or even the next day).


You may benefit from speaking to a nutritional therapist. You might have a biofilm problem at specific points along your digestive tract but I would let them make that determination and come up with a personalised treatment plan. Nutritional therapy is about "eating yourself well" and you might be surprised how effective it is. Good luck!


I thought sibo was fairly treatable with antibiotics? Or is it a recurring thing that just won't go away?


> If people would log all what they eat and how they feel.

Dietary data is one of the hardest things to collect. Either you need to hospitalize people and control their whole diet, and your sample size is small, because of costs, or you need to rely on self reporting, and your data is unreliable.

Basically, much easier said than done.


Biological systems are highly nonlinear and time-dependent, and also very individual! People have been trying learning techniques in glucose control since the early 2000s, and have only seen limited success in very controlled scenarios. I think a simple neural net would fall short of catching all that complexity, at least using the current architectures


Yes. I have celiac disease and I know people report following a strict gluten free diet for a whole year or more before they start to feel better. For me, I never did feel better, but blood tests show that certain celiac-related antibodies have returned to normal levels.

That's a very delayed and weak signal.


People won't log all the food they eat, but supermarkets actually have data on what food people buy.

So correlating that data with people's health could be very interesting!

I don't think that has much chance getting past an IRB though.


Youd have to somehow control for waste and individual consumption within a household, which would be very difficult!


Not for statistical studies across a population.


God forbid we use the data to do something good. But for marketing? Yeah no problem.


I do want to offer a limited defense of the medical community's "lack of open-mindedness". By the nature of their job, their work is inherently life risking. Most of us working in IT can afford to make experiments that doctor's cannot afford. I may be willing to try some unconventional approaches if the cost of error is an application crash and nuisance to the end user. If the cost of error is death of the user, I'm going to be far more conservative.

When a patient dies, society will treat a doctor very differently if it's perceived that the doctor was being unorthodox compared to too cautious. This doesn't mean that too cautious doesn't also cost lives. It's just really difficult to balance when the stakes are so high.

Anyway, good on you for taking ownership of your own health, and thank you for sharing your experience. I hope you continue to get better.


I'd respect this defense of medicine if medicine had resisted the U.S. dietary guidelines, which started as pseudoscience chosen by politics in the 1970s. Instead of being conservative about evidence and risks, the profession mostly was conservative about questioning that imposed consensus.


I'm convinced that dietary restrictions are extremely powerful for treating Crohn's and similar diseases, but patient adherence is so bafflingly low that the treatment may as well not exist in doctors' eyes.

Just as an example of a more studied case, the probability that an overweight person reattains normal weight through diet and exercise is well under 1% [1]. Now consider that diets for Crohn's (like a water fast and strict elimination diet) are considerably more difficult to follow than a weight loss diet - it's no wonder that diet appears to be ineffective for most people.

After a similar experience to yours I haven't had any foods with the 8 major allergens (and a few more select things) for over seven years, aside from a handful of accidents early on. That's not an easy diet to follow, but gets easier with time and experience.

1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4539812/


What are the 8 major allergens you're avoiding? Do you avoid anything else?


The 8 most common allergens as identified by the FD: milk, eggs, fish, Crustacean shellfish, tree nuts, peanuts, wheat, and soybeans. These are called out on all packaged foods, which makes it easier, though I'm OK with some derivatives like soy lecithin. I also avoid yeast (brewer's or baker's) and a few other small things like black pepper.

I've been in remission for long enough that I could probably start eating a lot of these things again, but I have no desire to go through another Crohn's episode, so I'll probably continue to avoid these foods for the next 40-50 years (unless there's a miracle Crohn's cure in the meantime). After that, as I understand, a weakening immune system from old age makes Crohn's symptoms significantly less likely or severe.


Indeed. It is difficult to have good-faith conversations about this subject with others sometimes because trust in "The System" (as it were) is often a core of peoples' relating to society. Western medicine does have excellent treatments for problems like appendicitis (in my case...), but is very much lacking in the holism that prevents the issues to begin with.

A quote from Ray Peat:

>“Besides fasting, or chronic protein deficiency, the common causes of hypothyroidism are excessive stress or “aerobic” (i.e. anaerobic) exercise, and diets containing beans, lentils, nuts, unsaturated fats (including carotene), and undercooked broccoli, cauliflower, cabbage, and mustard greens. Many health conscious people become hypothyroid with a synergistic program of undercooked vegetables, legumes instead of animal proteins, oils instead of butter, carotene instead of vitamin A, and breathless exercise instead of stimulating life.”

We see that health-consciousness, when lead somewhere by ideology, is not in itself sufficient to make progress.


Too many doctors erroneously just go along with "If the [front line] tests show nothing, it is nothing", such a shame.


I recall on an ask reddit a group of gastroenterologists were answering questions. One thing that stood out was they said "let your stomach rumble it's a necessary part of gut health".

Fasting would help initiate that, but I think so many people these days never stop eating long enough for their stomach to rumble.


I have also read that our gut doesn't like being in constant operation. Our ancestors didn't have access to food 24/7 and it makes sense our bodies adapted to take advantage of this by entering a self-cleaning state during long periods without consumption.


Have you noticed any trigger foods since then?

I'm kind in the same boat as you were in. Nothing live threatening but definitely daily annoyance of gut issues that impacts my life.

Mind sharing some meals you eat for breakfast, lunch, dinner? I'd love to try some new healthier options.


We have so many "bandaids" but very few cures these days. Perhaps AI systems will allow us to find root causes of these insidious diseases.


We stopped people dying from easy things so now they die from hard things.


We have so many cures that we simply forget about many diseases entirely.


Depending on how they are counted there are between 10000 and 70,000 different human diseases, and treatments only exist for around 500 of them. Further, the overwhelming majority of these treatments are not cures, i.e. treatments that end medical conditions in an individual.


Reminds me of GERD. It's a disease that affects a sizable group of people. It's a mechanical issue that is very well studied and known.

Yet, the main two treatment options are "workaround/hacks" or a very invasive operation.

There's only one [1] potential nobel "curing" treatment which is just gaining traction.

But innmy opinion with current technology, stuff like GERD or chronic bowel incontinence (due to mechanical failure of anjs sphincter) should be 100% solved.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624249/


Scientific-ideological blindness, the kind that benefits General Mills et al., is a significant limiter. AI will not change that, if anything, only reinforce it.


I mean, we have a pretty decent understanding of the causes and mechanisms behind Crohn's and colitis. The problem is that "your immune system is going nuts" is a hard problem to solve once it gets started, and the human immune system loves to go nuts on a moment's notice.


Genuinely asking, do we? Like, we might understand the mechanism but do we actually understand the cause, the "why" behind the mechanism? It was my understanding that there's practically infinite variety in which foods cause symptoms for different people, and that the specifics of each were still largely unknown


Well, for one, foods aren't the only thing that affect symptoms. And a lot of food issues are related to (1) which parts of your GI tract are affected and (2) what's wrong with them. People with strictures usually need to eat low-fiber diets, for example, but people without structures can actually benefit from some fiber.

The "why" is a little less clear, but it's likely a mix of genetic factors and environmental/infectious triggers. Plus good old-fashioned stress :)


This is NOT to halt chrohn's disease. This is to reduce side effects from primitive colon-removal surgery to treat Crohn'# symptoms.


That’s not my reading. One of the main symptoms of crohns is inflammation that leads to scarring and then surgery to remove the scarred intestine.

If this stops inflammation/ scarring that’s a big part of it.

Or to put it another way: you get scarring before surgery, too. The problem is that overtime there’s only so much intestine you can remove.


Is Crohn getting more and more common recently?


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I will just call my assistant to get the jet and shack ready in the Hamptons, and to cancel all my meetings!


This is a logical fallacy argument where you exaggerate. What I describe can be done in most locations, no Hamptons needed.


For most people work is equal to stress. They need to work to have money to live. Unless you are willing to pay for this person's existence, it is rude to suggest to "just have less stress", essentially equal to victim blaming.


Having had a friend who went about as extreme as you can go in natural healing for Crohn's (he literally loves as a traditional shepherd in the wilderness), it works, but it doesn't cure it.

Living off his animals and wild food keeps Crohn's symptoms to a minimum for him, but he'll still have flair ups. Stress doesn't only come from fluorescent offices!

For most people, your advice will certainly help, but many people will still suffer from the disease for their lifetime and will still need medical intervention. Crohn's is a very serious disease and can be deadly without medical care.


quantify enough


No, it won't. This is so stupid.


Yes, it will.


No it won't. Proof myself


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Anecdotes aren't data. Cornhs disease is know to go into sponteneuous remission in around 10% of patients for no reason what so ever for years to dacades at a time.

So if you have batch of a thousand people each going from one fad diet to the next you'd get around 100 of them telling you very loudly that whatever flavour of the month cured them. The 900 who didn't just move to the next fad.


My two half-brothers have Crohn's. My step-sister's two boys have Crohn's.

I don't have Crohn's. She doesn't have Crohn's. There's research ongoing into the genetics of Crohn's.

Changing diet can help ameliorate the symptoms, but it won't cure it any better than "taking the air" in Switzerland will cure asthma. And stating so boldly that a "wrong diet" causes it? Just to reiterate, of five kids raised on the same diet, (me, my 2 half-brothers, my 2 step-siblings) two have it, three don't.

But sure, just eat some raw meat or drink some vegan juice, problem solved... ...are you actually fucking serious mate?

You obviously know nothing about Crohn's and your glib handwavey internet opinion of "Duh, just eat some meat and roots" is, well, so goddamn dumb and shallow it's actually offensive.

Wovon man nicht sprechen kann, darüber muss man schweigen. Whereof one cannot speak, thereof one must be silent.


Crohn's has very strong genetic links, so anyone blaming it on diet is very silly :P

I'm guessing your half-brothers and half-sister's kids have the HLA-B27 gene, which is the big one for autoinflammatory diseases.


Very strong genetic links are not especially evidence against a dietary cause. An AND of a particular allele and a particular food would take that pattern, for example.


I don’t think correlation = causation in your anecdote. Care to provide some examples of people who were “cured” of Crohns through diet alone?

I have had Crohns for nearly four years with it in remission for the last two years. Diet and other lifestyle changes did slightly improve symptoms, but the only things that have yielded profound change were Inflectra and prednisone.

I think for those who have Crohns bad enough where they’re facing surgeries or being on a biologic for quite some time, diet alone isn’t going to fix the damage inflammation has already done.


Curing with diet is very difficult because if your gut microbiome goes too far out of wack then it can be impossible to get it back in balance even with nasty antibiotics.

However, there should be more focus on prevention and healthy eating.




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