101–110 of 129 posts
I sure hope a CRISPR edit treatment comes along to permanently cure some of the serious Crohn subtypes.
> Australia has among the highest incidence of Crohn’s disease in the world We really need to look at supply chain and environmental factors.
IBDs like Crohn's and Ulcerative Colitis have increased in incidence (controlling for better diagnosis) as countries develop[1] [2]. People in developing countries have a lower rate of incidence, and if they move to developed countries, the incidence remains low. However, their children, born in developed countries, experience the higher rate of incidence. Something about being a child in a developed country increase…
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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…
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>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.
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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…
> Many of the biologics are also quite new, and the long term effects of taking them are not well understood. It's interesting that this has become a talking point now for basically any new therapy. As soon as something new and promising comes out, we "don't understand the long-term effects" -- but this discounts (1) the years and years of research and development that go into them (2) the decades of research and dev…
I also should point out that "long term effects of taking them are not well understood" isn't my personal opinion per se, it's something I've read in the literature about these drugs, including relatively recent research (I wish I had a good source that summarizes this point, but I don't have one on hand). Concern about long term effects is real and legitimate, and pre-dates concern about COVID-19 vaccines (another instance where I believe the benefit far outweighs the risk, for the record). There must always be a balance between spending time testing vs. getting a pharmaceutical deployed. It would be absurd to imply that we're not making a tradeoff here.
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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 don't recommend everyone follow the same diet, but for whatever it's worth, eating junk food has helped my relative, true story. Crohn's disease affects each patient differently. Depending on what part of the gut is being attacked [1], different digestive processes are implicated. That will lead to different kinds of foods being potentially problematic (as well as leading to a need for different kinds of supplement…
When it comes to fiber in particular, I think what can confuse people is the difference between water soluble fibers like oatmeal, and extremely insoluble "macrofibers" like raw green asparagus, leafy greens, orange pith etc. The former is OK for some, the latter is no-go for everyone AFAIU.
Another curveball is nearly underbaked dough, like you'll find in a lot of commercial bread and rolls, even if it has zero fiber. If you can knead it back into dough with your hands, it might just form a nice lump in your gut as well.
I have the same thing as you with corn, and also with nuts unless eaten with lots of liquids. I think it goes back to the possibility of forming tough paste in the gut.
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I don't recommend everyone follow the same diet, but for whatever it's worth, eating junk food has helped my relative, true story. Crohn's disease affects each patient differently. Depending on what part of the gut is being attacked [1], different digestive processes are implicated. That will lead to different kinds of foods being potentially problematic (as well as leading to a need for different kinds of supplement…
The "your mileage will vary" part is definitely true, as well as the "incredible what kinds of pain you can get used to". I had 30 cm of my upper intestine removed 12 years ago. Doctors said it was so constricted you couldn't pass a pencil through, but I was still managing to ski double black diamonds two weeks before surgery. When it comes to fiber in particular, I think what can confuse people is the difference bet…
I tell people that if it looks the same coming out as it goes in, I can't have that banging around my guts.
Any fast or junk foods are totally fine since they're mostly low fiber, but high fiber foods are mostly okay, too.
Due to my strictures and the nightmare stories I've read from people online, I specifically eat foods that are mushy or smoothies and soups. Basically, I'm pre-digesting the foods before they're eaten so they're easier to pass through a narrowing intestional wall and it has worked well for years now. Only time I've had issues are when I eat too quickly, too much at once or have one of my problem foods.
I'm also on a biologic, which made all the difference after being untreated for about 6 months, which I wouldn't wish on my worst enemy.
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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…
> The vagus nerve regulates inflammation and cytokine release through the inflammatory reflex. Recent pilot clinical trials using implantable bioelectronic devices have demonstrated the efficacy of vagus nerve stimulation (VNS) in adult patients with inflammatory bowel diseases (IBD) as an alternative to drug treatments.
https://bioelecmed.biomedcentral.com/articles/10.1186/s42234...
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.
How did you do it?
Taken mesalazine as directed by my doctor for nearly 30 years, and been extremely lucky.
(I’ve had to take predisone three times for flare ups, but not for more than 20 years. As I said, extremely lucky).
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…
However I have been prescribed prednisolone for brief periods in the past when I’ve had active disease, which has a lot of known risks with long term use.
I don’t know if it’s still used much but at one stage my doctor considered prescribing Azathioprine (Imuran), which has some potential nasty side effects and risks.