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

florey.edu.au

51–60 of 129 posts

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

#51
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…

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.

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

#52
post #11

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…

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.

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.

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

#54
post #39
post #23

Earlier quoted context omitted.

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 i…

Rinvoq?

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

#56
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…

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.

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

#57

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…

> 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.

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

#58
post #39

Earlier quoted context omitted.

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 i…

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

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

#60
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'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/

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