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

florey.edu.au

61–70 of 129 posts

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

#61

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…

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

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

#62
post #8

Earlier quoted context omitted.

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.

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

#63
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 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.

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

#64
post #51

Earlier quoted context omitted.

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.

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.

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

#65

Earlier quoted context omitted.

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.

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.

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

#67
post #58

Earlier quoted context omitted.

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.

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

#68
post #23

Earlier quoted context omitted.

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

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.

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

#69

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

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

#70
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…

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...)

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