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First-in-human implantation of bionic device to halt Crohn's disease (2023)

florey.edu.au

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Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#91
post #60

Earlier quoted context omitted.

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…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#92
post #56

Earlier quoted context omitted.

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#94
post #23

Earlier quoted context omitted.

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

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 azathiopri…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#95

Earlier quoted context omitted.

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…

>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…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#96

Earlier quoted context omitted.

>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…

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!

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#97

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 con…

> 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.ncb…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#98

Earlier quoted context omitted.

> 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.ncb…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#99

Earlier quoted context omitted.

> 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.ncb…

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.

Re: First-in-human implantation of bionic device to halt Crohn's disease (2023)

#100

Earlier quoted context omitted.

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 :)

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