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

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

#31

Post by yterdy »

Buttons840 wrote: post #27
cjdell wrote: post #24

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 da…

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…

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).

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

#32

Post by SirMaster »

Buttons840 wrote: post #27
cjdell wrote: post #24

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 da…

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 is correlated with worse symptoms.

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

#33

Post by jdadj »

fao_ wrote: post #26
yosito wrote: post #11

Earlier quoted context omitted.

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

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

#34

Post by atombender »

pazimzadeh wrote: post #2

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.ncbi.nlm.nih.gov/24361468/

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

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

#35

Post by ibash »

cjdell wrote: post #29
Buttons840 wrote: post #27

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…

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.

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

#36

Post by Workaccount2 »

cjdell wrote: post #24

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 da…

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

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

#37

Post by loudmax »

cjdell wrote: post #24

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 da…

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.

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

#38

Post by 6177c40f »

epgui wrote: post #23
rgmerk wrote: post #7

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.

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 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.

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

#39

Post by jml78 »

epgui wrote: post #23
rgmerk wrote: post #7

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.

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.

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

#40

Post by jessriedel »

6177c40f wrote: post #38
epgui wrote: 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…

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.
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