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Comment by skim_milk | Hacker News Reader

For me, the thing that sucks most about IBS is the medication. The link between mind/body/pain/inflammation is pretty obvious when you start taking strong anti-inflammatory drugs, at least for me! Evidently, everyone in my family tree responds really poorly to steroids and other anti-inflammatory drugs - a relative of mine committed suicide after taking steroids for IBS with absolutely no evident mental problems before treatment, leaving behind his young family. Personally, I'd rather die early from my gut diseases than go back on anti-inflammatory drugs, even the modern biologic ones that supposedly have no side-effects. There's just no way to target inflammation with drugs without severely impacting the brain (at least with me and my family's biology).

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A friend of mine was dying from it at the hospital. Strong medication, followed by stronger one and then experimental ones that cost thousand a pill.

At some point he said ’fuck it, if I going to die it’s going to be in the sun’ (he lived in cold Canada.)

He went to Mexico and completely recover without any drugs, eating anything he wanted. I later found there is a strong connection with vitamin D deficiency and autoimmune diseases.

Look into functional medicine if you haven’t, basically the idea of giving what a normal body need to function properly ( good food, sleep, friends, family, sun, etc, probiotics) and mostly get out of the way.

I could definitely see how low Vitamin D could be bad for you (well we already know it's bad for you actually).

What I'd like to know - even though it's an anecdotal data point from one guy only - what does anything he wants actually mean?

I.e. did he somehow eat his regular Canadian diet in Mexico or did he eat more local?

Asking because IBS is a bowel disease and gut micro biome I would gather can play a large role as well.

Maybe your gut microbiome doesn't depend on just which foods you eat but also on the environment it is prepared and other environmental factors. I mean, perhaps in Mexico there were different microorganisms in the same foodstuff

Definitely possible though I would assume the two go hand in hand.

Take cabbage. Eating cabbage will allow certain microbes in your gut to thrive. But only if they are there in the first place.

Different experiment: Let cabbage sit in salt in an anaerobic environment for some time. Then eat it. Now the cabbage brings the beneficial microbes to the gut and helps them thrive there.

Cabbage with salt in an anaerobic environment makes Sauerkraut. Salt let's certain microbes survive but not others. The final lactobacillus that do survive themselves produce an acidic environment that further results in many non beneficial microbes dying.

Many cultures have similar food preparation techniques that turn out to be beneficial. Kimchi being similar - and part of the health craze nowadays.

I asked because I would associate lots of beans and such with foods in Mexico and beans make for a very different gut micro biome than the regular western diet. That's why someone on a western diet will pass a lot of gas when eating beans from time to time, as the bacterial makeup changes while eating lots of beans will have the opposite effect when eating a western carb diet from time to time. Been there. Done both :)

That's very interesting, thanks!

And, it makes sense that beans makes people pass more gas only if they are not used to eat it regularly.

There certainly a correlation with food but I don’t know anything about that.

I found in research paper the link with vitamin D and ibs and most autoimmune diseases.

From what I remember he ate a lot of local fresh fruits and other local food.

Damn, so I really need to follow up on my plans on moving to e.g. Thailand (and getting happy by following my dreams in terms of work/endeavors).

I don't have IBS but more like a colitis and I was really good for months but it came back strong after one of my dogs passed away and I got terribly sad.

What I'm getting at is that more than a vitamin D, I suspect a strong link to happiness and life satisfaction.

Above all, for all readers: talk about these things with your doctors. There is a lot of anecdotal evidence online and it's just like negative reviews: the people with positive experiences aren't really talking about it much.

As someone with a bowel disease, I can thank medicine for giving me my life back.

Another data point: I started Prednisolone 5mg a month ago, it has markedly boosted my energy levels. I hope this goes on forever.

5mg daily? Or once a month?

5mg is the level my SO refuses to go beyond for daily dosage. At 10mg she starts to cry every day.

Reasonable, you really want to stay below the Cushing limit.

Be careful to talk with your doc about Prednisolone's potential long term effects on bone density. It's great as a quick fix though.

Is there a way to compensate?

I have a suspicion that this is exactly the type of question a doctor would be able to answer, which is why GP suggested you should reach out to one.

It is widely known that medical questions can only answered by MDs. Legal questions only by lawyers. Philosophical questions only by philosophers. Basically no questions should be asked or answered in a forum, as they will always be inferior to what The Experts™ say. Also every question can only be asked and answered once, so its either forum or expert.

That one nearly caused me to go blind. Had to go to a hospital.

How did that occur?

I had to piece it together but it affected the way my body produces hormones, one of which controls cerebrospinal fluid. The fluid built up in pressure and affected my eyes.

As someone with UC, medicine outside of prednisone has done nothing for me. Given that my disease is likely caused by something that modern science says is safe the least they could do is fix it. The pessimist in me says they make too much money.

Controlling stress and smoking have been the best fixes (the latter works but smoking is still bad for you).

Do other nicotine delivery systems work? Could you get the same effect with gum, patches, or vaping?

> talk about these things with your doctors

Maybe, but at the end of the day it is your decision. You absolutely can read a pile of papers on your specific issue and invest hours into it. It will without a shadow of a doubt be more attention than the GP has for you (at ~10 minutes per appointment), or even a specialist who might invest an hour into you if you're lucky. Unless you're dying, in which case it's still not certain.

For me, being prescribed increasingly higher doses of steroids in the beginning of the lockdown we had here because of my asthma was not nice. After about a year of this, I realised it got a lot worse after staying indoors for 1.5 years. It sounds obvious and in hindsight it was, but my doctor knew all of this and never ever addressed the fact that maybe I should spend more time outside (with absolutely 0 mention of testing for vitamin levels or prescribing something along those lines). Doctors come in widely varying qualities and some of them are really bad.

I recently came across a term "Functional Medicine" https://www.ifm.org which looks at the body as a whole and tries to root cause metabolic issues which can often result in IBS cures.. most older medicinal practices always considered the body as a unified system which make sense in terms of how it is engineered but modern medicine tries to break things down and often misses the cross specialization impacts. Best of luck!

How is this far enough from the default to even have a word, let alone separate training?

Yeah don't talk to a DB admin about SQL compiler issues.. :-P

Yeah, but any competent DB admin will at least read the logs, do a few A/B tests, blocking out different parts or using queries which should be equivalent and then say 'something is hinky with the way this query is compiling, query z seems to give a different answer if query y is written like foo even though I see no link. Probably a subtle bug in your code I haven't spotted. Maybe ask someone who knows more about the compilation step?'

Even if they 'solve' it by rewriting query y, they'll not claim that query y was the problem, and may even leave a comment or commit log saying they didn't understand why writing it like har fixed it.

Note the word competent.. Also, insurance companies will often have opinions on what tests were valid and might reject paying for tests. So if a DB admin spins up a cluster to debug his hunch of a SQL Compiler issue, that bill will be paid by the customer and not the insurance and might bankrupt the customer.. I had an apt with a cardiologist where he literally read a standard template of care and when I tried to see if he is interested diving deeper into inflammation causes, tests and ways to avoid the standard medications which only deal with symptoms he was least interested as it all dealt with metabolic issues and not the heart per se.. the system is run to see how can a patient be billed and who owns the organ. Insurance companies have swim lanes and medical practitioners are educated and trained to remain in those swim lanes.. as long as things are kept simple for prescribed cures and billing, the gravy train continues.. it not in their best interest to solve the problem. Have you ever been to a annual physical where god forbid you discuss issues that are not part of the normal annual health checkup? You will actually be asked to schedule a separate appointment as the billing for that is separate.. A lot of "functional medicine" happens outside of insurance payment coverage. Some more interesting things to follow: https://cholesterolcode.com/ https://cynthialimd.com/faqs/

If each part of the body has its own specialised discipline, then holistic (as in "of the whole" not "based on rubbish") medicine is the exception not the norm. Example: surgery to fix sports or occupational injuries will not correct the movement patterns or muscle imbalances that caused it, and thus it is likely to recur.

I don't get it. Like how are you a knee doctor if you're not aware of what knees do or how they should work in the overall system.

On a system as incredibly simple as, say, an old carbureted motorcycle you don't just look at the spark plugs if there is poor ignition. You look at the carb, air filter, rings, valves, top dead center sensor, timing chains, the cdi/tdi, the coils, and the battery (although probably not in that order).

If the problem is the battery no sensible home mechanic (and no ethical professional mechanic) stops there, you check the voltage regulator and the stator or you're going to find yourself replacing a lot of $100 batteries for want of a $30 IC or a piece of $2 copper wire with a break in the insulation.

The exact same process applies in debugging or designing a physics experiment or making a pcb or repairing a house or therapy, or...just life. Like, you're never going to keep your room clean if your wardrobe is too small to hold all your clothes....

I can't even begin to comprehend a mindset which claims to be part of STEM (or even as professional as a tradesman) in which this concept is foreign or novel.

A knee doctor will be aware of what knees do and how they support your musculoskeletal system. The problem is institutional: if you go in with a knee injury, you'll be triaged and sent to the knee clinic for scans and assessment for a break, sprain, etc. If that problem is found, it will be treated. But it may be that your knee pain was actually caused by bad posture (it's pretty shocking the number and variety of injuries you can sustain from bad posture) and neither triage nor the knee clinic are assessing your posture. They probably could send you to somebody to do so, but the institutional will is not there because that's not how the medical system is designed.

A whole systems health model would involve essentially a debugging process for injuries and maladies in order to find root causes and treat them. It would require a totally different (transdisciplinary) approach to health though, and institutions don't really change.

There really are no adults in charge of anything anywhere, are there?

as the saying goes, the lunatics are running the asylum.

In reality it's all systemic pressures everywhere and nobody, not even institutional administrators, likely have much in the way of free choice over anything that matters.

Moloch will eat us all.

indeed he will, unless we learn how to manipulate him. This is why I'm confused as to why rationalists seem to have done basically no research into complexity theory (systems/cybernetics). Scott Alexander's done the Moloch pieces, and this one article on dynamical systems [1] but aside from that the closest they get is machine learning, which is a descendant.

[1] https://astralcodexten.substack.com/p/ontology-of-psychiatri...

The rationalist celebrities could look more at dynamical systems, but then they'd have to admit that systematic effects exist and that daddy Thiel et al are using them to f* everyone over forever in order to pad their already bloated wallets.

True, being a libertarian does disincentivise looking at systems and systemic effects because the biggest system we live in is capitalism and the systemic analyses that have already been done on it don't paint the prettiest picture.

I have autonomic-dysfunction, basically my nervous system malfunctions in (luckily) mild ways. I've noticed that if I go from an unhealthy lifestyle to suddenly living a healthy lifestyle there's often a period where I feel sick, pale, and faint.

Luckily this effect only lasts a few days for me but it's made me wonder if our bodies find ways around malfunctioning and then can't adjust quickly enough if the malfunction is reduced or removed.

That's interesting! My situation is the exact opposite, there's a very tight positive correlation between good mental health and reduced gut symptoms. e.g. my gut problems completely disappear when I'm driving or hiking, my favorite activities. Gut problems re-appear with mental stress, and find me a toilet fast!

Really I couldn't have asked for a better problem to deal with. The correlation between mind/gut health is so instantaneous and powerful, my child brain got Pavlovian-conditioned to deal with mental stress. I couldn't just dissociate from mental pain, I really had to understand and deal with causes of stress in a healthy way, otherwise I would be forced to the floor in the fetal position from all the cramps. Platitudes about always listening to your gut are funny, taken both literally and figuratively that's my life!

Seriously, talk about tight feedback loops. Anxiety feels like somebody hooked it up to guitar amps. Any slight perturbance and alarms go off. I have not been super successful in mentally wrangling it, but there's always hope.

Have you tried any psychotherapies or responded positively to any? Getting exposed to situations that left me vulnerable emotionally ultimately led me to the insights and epiphanies I needed to overcome that vulnerability, kind of like EMDR therapy. E.g. social anxieties disappeared once I forcefully put myself out there and realized none of this matters, I can deal with rejection positively. In the most extreme case, I had a panic attack from an incident with THC that I am certain would have left me dead had I access to a firearm which uncovered thoughts and emotions that I was hiding from myself that I later was forced to confront and eventually heal - learning how apply a "it really do be like that" mentality productively, not too much or too little and only at the right times. Internal Family Systems was also necessary for me to understand what made up the ""real me"" and what was split-off misunderstood defenses from childhood stress, defenses of which actually caused stress and pain all said and done! While painful at first, it eventually blew over and I slowly learned how to more optimally integrate and control stress responses.

I haven't tried any therapy. I'm not sure at what point the benefits outweigh the cost in time and money. I'll look into it further as I've honestly never considered it as a treatment for gastro problems.

Interesting, you just helped me possibly connect something in my own life.

When I was a kid I used hate using school toilets. And I was a highly anxious kid which would present as stomach butterflies. I dealt with constipation as a kid, which further made me nervous because I'd experience it AT school and be too afraid to sit down a while at school.

Fast forward 20 years, the most stressful time of my life (moving cities, dealing with depression, mom got cancer, ...) and I developed IBS-C. My intestines don't move thing along, need to stimulate with drugs. Unfortunately it hasn't gone away.

Lots of people note IBS diseases getting better or going away after life stress is dealt with and goes away, or is brought on because of psychological stress. Here's one example by an ex-psychotherapist (one of my favorites on YouTube) that, after fixing his stress, went from needing to go to the restroom 15 time a day with blood in his stool to going completely in remission after changing his life and lowering his stress levels - https://www.youtube.com/watch?v=P9brVhmWr2M

Different people with different biology react differently but my bodily reaction to stress happened to be a lot like the one in the video.

> a relative of mine committed suicide after taking steroids for IBS with absolutely no evident mental problems before treatment,

I'm sorry about your relative. I had a terrible reaction too. Corticosteroids caused downregulation of androgen receptors and for a few months, I was in a desperate place.

I found Tribulus could upregulate androgen receptors (and seemingly, a few non-androgen ones) and it saved me.

this is the problem with western medicine. where medication is the end all be all. various cultures have known since time immemorial that the gut is linked to healthy brain function. hence why most cultures have a form of fasting, advocate drinking fermented drinks / foods such as yoghurt, kefir, beer etc. there's certain foods that you eat and feel your blood draw to a halt and you feel lethargic. then there's certain foods that you eat and your brain fires up, and you feel blood rushing.

I had pretty crazy side effects from biologics (ultimately I feel they made things worse). No one believes sick people though :P

Have you considered BPC 157? There has been some research that it can be beneficial. There are some user discussion on r/Peptides concerning BPC157 and IBS, etc.

Brain-gut Axis and Pentadecapeptide BPC 157: Theoretical and Practical Implications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5333585/

I’ve been reading, from medical doctors, about how inflammation is tied to diet. There are a bunch of papers on it. “Fiber Fueled” was an interesting book to explain what’s going on.

Have you looked at the impact of diet?

Sorry, this is not helpful. I guarantee you that anyone who suffers gastrointestinal disorders has considered their diet. The pain sometimes feel like a bottomless pit of suffering.

I had GI issues and talked to doctors about it. Not a single one of them said anything about diet. Looking back at it is rather frustrating.

When I first learned about diet the advice was terrible. It didn’t work.

Now that I have a good conceptual model for my GI track and food it all makes more sense.

For me (well controlled IBS), diet only seems to be a minor factor. It can be very difficult to really figure out if any particular food is causing a problem, or if it's some other factor. You need to test the food multiple times under different circumstances. For myself, I did think that certain foods caused problems. But I've since realised that I can eat pretty much all of those foods without problem. There are certain things that I'm careful about (alcohol, and wine in particular, sugary drinks, and coffee), but even those I can tolerate in moderation. The only thing that reliably causes symptoms for me is stress (100% of the time).

I fully understand where you are coming from, but do not discount the power of diet. I found, that in order to see a real difference, I had to move ~very~ far away from my old habits. It can be a scary thing to do.

Every gastroenterologist I have ever talked to has been ~absolutely certain~ that diet plays no role at all in gut inflammation.

I'm glad to see this mindset start to change.

Hm that's weird, is that recent or 10+ years ago? I went to an old man gastro doc and he said the first thing on the checklist nowadays with IBS is low FODMAP diet.

The most recent doctor I asked was 6 months ago. I've been diagnosed with Chrons specifically, so that may be a factor.

Incidentally, my current diet is extremely high in a subset of FODMAPs and has helped dramatically.

Absolute certainty is not how any heard any doctors (outside of politics) frame their level of certainty on medical questions. Isn’t it more like “there are no studies showing a link between X and Y”?

You would think, but my personal experience is the exact opposite. I actually continue to ask every new doctor the same question and continue to receive the same answer.

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