3 ms·

I'm a biochemist with 12 years of postsecondary education in life sciences, and I have Crohn's Disease. There is no cure for CD, you must do your best to accep

by epgui 5y ago

I'm a biochemist with 12 years of postsecondary education in life sciences, and I have Crohn's Disease. There is no cure for CD, you must do your best to accept that. Furthermore, despite what you may have read in this article, elsewhere on the internet and in countless anecdotes (such as on this hacker news page in the comments), it is highly unlikely that changing your diet will affect the disease. At most, changing the diet will cause or reduce some discomfort (imagine gas bloating up ulcerated tissue, or capsaicin from hot pepper touching an ulcer: the gas and the capsaicin doesn't cause the ulcer, and doesn't make it any worse, but it makes it hurt), but no diet change will stop the disease. The best thing you can do for your son is to keep regular follow-ups with a gastroenterologist and follow the suggested course of treatment. That will probably mean taking biologics such as anti-TNF medication or other antibodies, but there are a variety of ways to approach treatment and it depends on the patient.

bladegash 5y ago
I have Crohn’s as well and agree with the sentiment in this post. Mine mostly affects me due to strictures and the diet part most definitely appears to be correlated with foods producing greater amounts of gas/discomfort. Only two things that have worked for me are prednisone and Inflectra. For others, Budesonide or other biologics work for them. For the unfortunate, surgery is one of their only options and many times is temporary. Crohn’s definitely sucks and I would do you best to find a good GI and be extremely persistent. It took me over a year to find something that works and a lot of really tough days/nights/weeks/months in between. As a parent myself, I can’t imagine how helpless you must feel watching your own child struggle with it. Wishing you guys the best of luck and thoughts are with you!
- epgui 5y ago
  I'm sending you good vibes and wishing you luck! Somewhat paradoxically... I'm curious if you've tried to modify your diet by including extremely spicy foods on a daily basis? Most people approach diet modification as a way to maximize comfort and minimize pain, but my strategy is to use capsaicin as a 100% safe and pure-pain mechanism to sound the alarm when I develop an ulcer. It's not always immediately obvious when you develop an ulcer, depending where in your GI tract it is... And this is where knowledge is power: if you can somehow know that you're going to flare up before you actually flare up, then my argument is that you have a better chance at damage-control. Similarly, if you are more pain-sensitive to ulcers you would be getting either way, then you might be aware of more episodes of inflammation than you might otherwise be. With my super hot pepper diet, knowing that it's purely pain and no damage makes the pain itself a lot less stressful, and I have very occasionally used this signal to take a single 2.5mg dose of prednisone (I've been on the same no-refill bottle since 2013, so this doesn't happen often). Since 2013, I've never had to take more than one dose at a time, and judging by how many pills I have left, I've probably only done it 20-30 times or so (I should really keep a journal). (Disclaimer: I wouldn't put a lot of faith in this tip, and I'd strongly caution against taking corticosteroids for more than a few days, and to talk about this with your doctor before trying it.)
  - bladegash 5y ago
    Funny enough, I’ve almost never eaten spicy foods. Interesting way of finding where/if you have an ulcer! Mine is in my terminal ileum and I can definitely feel when things are…tighter, for lack of a better description. Definitely agree with recommending staying away from corticosteroids if you can avoid it. I was on them for a year and the side effects on them were not too horrible, but getting off was a whole other story! I am glad they were there though, as it was only thing keeping me from surgery/the hospital until I found a biologic that worked.
- caf 5y ago
  I don't think Budesonide is a biologic, is it? As far as I'm aware it's an expensive steroid that often has many fewer side-effects.
  - epgui 5y ago
    You're correct, budesonide is not a biologic, it is a corticosteroid. "Biologic" was most likely in reference to inflectra / infliximab.
  - bladegash 5y ago
    Ah yes, poorly worded sentence. Inflectra was the biologic, whereas budesonide would be an alternative to a systemic corticosteroid such as prednisone.
clouddrover 5y ago
> There is no cure for CD, you must do your best to accept that. Maybe, maybe not. This Crohn's vaccine looks promising. The vaccine is preventative and curative so it can treat patients who already have Crohn's: https://crohnsmapvaccine.com/ https://crohnsmapvaccine.com/ https://crohnsmapvaccine.com/faq/ https://crohnsmapvaccine.com/faq/ They've started safety trials in Crohn's patients. Hopefully it all works out and the vaccine proves to be effective.
- epgui 5y ago
  I think vaccines are an interesting therapeutic approach for IBD, but personally I don't feel very optimistic that we'll make it work in the near-term. The website you link to gives an excessively misleading / false impression that MAP is the cause of CD. There have been a number of whole microbiome sequencing studies comparing IBD/CD patients and healthy controls, and to the best of my knowledge, though there are demonstrable differences, no studies have established or even really "strongly suggested" a causative link with a specific microbe or even with a class of microbes. There are many other candidates that have been found to be associated with IBD, but none of them seem to be to blame on their own. If MAP was the cause of CD, we would easily know it from these studies. If we knew that MAP was the key, then treatment and prevention would become quite a lot simpler. We simply don't know that, and I'd go so far as to say that this will never work beyond a small subset of patients. IBD (both UC and CD) have a notoriously multifactorial aetiology.
jcrben 5y ago
The idea that diet doesn't affect the disease is incorrect. We've known for a while (40 years now?) that exclusive enteral nutrition has an effect size on Crohn's (seems to be pretty strong) and it's even similar to prednisone in treating flares particularly in children. https://www.cochrane.org/CD000542/IBD_enteral-nutritional-therapy-treatment-active-crohns-disease https://www.cochrane.org/CD000542/IBD_enteral-nutritional-th... A couple years ago a trial looked at replicating EEN with solid foods with promising results https://pubmed.ncbi.nlm.nih.gov/30550821/ https://pubmed.ncbi.nlm.nih.gov/30550821/ EEN is a first line therapy in adolescents but rarely mentioned to adults (and in North America less commonly mentioned to adolescents). I was treated at Kaiser and UCSF and nobody ever mentioned it to me. From the Cochrane article: "Whereas 62% of western European gastroenterologists use this therapy routinely for the management of pediatric patients with Crohn’s disease, only 4% of American gastroenterologists regularly use enteral nutrition in their practice (Levine 2003)" As a Crohn's patient I found it worked well layered on top of a biologic to get into quite deep remission. Aside from EEN, once you are in remission bowel habits are clearly manipulated by diets - being regular is caused by diet/hydration. I have pretty much perfect consistency right now and it's pretty easy for me to change that if I switch up my routine.
- epgui 5y ago
  "Diet doesn't affect the underlying pathology" in Crohn's Disease is definitely a simplification, but I believe it's a healthy and important one, as the harm caused by an elimination diet (or the cost of any given special diet) can easily outweigh its benefits. It's not in the human nature to accept that certain things are outside of our control, and IBD is definitely a case where people tend to delude themselves into thinking that some dietary intervention worked when it did not. In principle, we understand that an important part of the aetiology of CD has to do with interactions of the gut microbiome with a dysregulated immune system and a perturbation of the intestinal barrier. We know that the gut microbiome is somewhat plastic to dietary changes, though research findings regularly frustrate attempts at intentional modification. It would be more correct to say that there is no dietary change which is known to causally and intentionally alter the course of the underlying disease. That is not the same as saying that no relationships or correlations have ever been observed, or that dietary changes do not provide some symptomatic relief: on the contrary, we know that people who have a certain diet have a lower prevalence, or better subjective or even objective outcomes. Unfortunately, most attempts at taking patients from the worse group and changing their diet to match that of the better-off group fall flat on their face. This is a few years old and is not specific to CD, but it is a great example of the type of results we see over and over again in dietary intervention studies of this nature: https://www.cell.com/fulltext/S0092-8674(15)01111-3 https://www.cell.com/fulltext/S0092-8674(15)01111-3 Obviously this is an area of research of great interest, and if we could figure out a way to improve outcomes by making specific and robust dietary change recommendations, we would. It really is not that simple, unfortunately. I don't dispute the results of the studies you link, and I find the Cochrane meta analysis particularly notable, but I would caution that interpreting the results doesn't seem to me to be as straightforward as it might seem. I wonder whether controls are adequate (there is no placebo group here, for ethical reasons), I wonder whether the results can speak of longer-term outcomes, whether there is a selection bias (would you do this study with patients who have severe or advanced disease, or mostly with people who have milder clinical presentations?), whether the results might indicate to some degree the natural progression of largely self-limiting flareups, whether it's appropriate to compare induction of remission using corticosteroids with diet interventions (which I'd expect would have more of an effect on maintenance of remission, if anything)... I just don't think it's that simple. Remember that people with untreated CD will have flare-ups that occur and resolve spontaneously for some time before the disease starts progressing and surgery is required. That being said, non-elimination, generally-healthy diets, on the other hand, are always recommended, as is regular physical exercise.
enimodas 5y ago
I think railing against diets like you're doing here is harmful. Research is finally going in this direction, and as you can see, there's plenty of annecdata for people where dieting was beneficial, or even let them go into full remission. Sure, there's no diet that works for everybody, and diet doesn't help everybody, but that just means it's more difficult to do studies on, not that it's a wild goose chase.

by epgui 5y ago

bladegash 5y ago

I have Crohn’s as well and agree with the sentiment in this post. Mine mostly affects me due to strictures and the diet part most definitely appears to be correlated with foods producing greater amounts of gas/discomfort. Only two things that have worked for me are prednisone and Inflectra. For others, Budesonide or other biologics work for them. For the unfortunate, surgery is one of their only options and many times is temporary. Crohn’s definitely sucks and I would do you best to find a good GI and be extremely persistent. It took me over a year to find something that works and a lot of really tough days/nights/weeks/months in between. As a parent myself, I can’t imagine how helpless you must feel watching your own child struggle with it. Wishing you guys the best of luck and thoughts are with you!

epgui 5y ago
I'm sending you good vibes and wishing you luck! Somewhat paradoxically... I'm curious if you've tried to modify your diet by including extremely spicy foods on a daily basis? Most people approach diet modification as a way to maximize comfort and minimize pain, but my strategy is to use capsaicin as a 100% safe and pure-pain mechanism to sound the alarm when I develop an ulcer. It's not always immediately obvious when you develop an ulcer, depending where in your GI tract it is... And this is where knowledge is power: if you can somehow know that you're going to flare up before you actually flare up, then my argument is that you have a better chance at damage-control. Similarly, if you are more pain-sensitive to ulcers you would be getting either way, then you might be aware of more episodes of inflammation than you might otherwise be. With my super hot pepper diet, knowing that it's purely pain and no damage makes the pain itself a lot less stressful, and I have very occasionally used this signal to take a single 2.5mg dose of prednisone (I've been on the same no-refill bottle since 2013, so this doesn't happen often). Since 2013, I've never had to take more than one dose at a time, and judging by how many pills I have left, I've probably only done it 20-30 times or so (I should really keep a journal). (Disclaimer: I wouldn't put a lot of faith in this tip, and I'd strongly caution against taking corticosteroids for more than a few days, and to talk about this with your doctor before trying it.)
- bladegash 5y ago
  Funny enough, I’ve almost never eaten spicy foods. Interesting way of finding where/if you have an ulcer! Mine is in my terminal ileum and I can definitely feel when things are…tighter, for lack of a better description. Definitely agree with recommending staying away from corticosteroids if you can avoid it. I was on them for a year and the side effects on them were not too horrible, but getting off was a whole other story! I am glad they were there though, as it was only thing keeping me from surgery/the hospital until I found a biologic that worked.
caf 5y ago
I don't think Budesonide is a biologic, is it? As far as I'm aware it's an expensive steroid that often has many fewer side-effects.
- epgui 5y ago
  You're correct, budesonide is not a biologic, it is a corticosteroid. "Biologic" was most likely in reference to inflectra / infliximab.
- bladegash 5y ago
  Ah yes, poorly worded sentence. Inflectra was the biologic, whereas budesonide would be an alternative to a systemic corticosteroid such as prednisone.

clouddrover 5y ago

> There is no cure for CD, you must do your best to accept that. Maybe, maybe not. This Crohn's vaccine looks promising. The vaccine is preventative and curative so it can treat patients who already have Crohn's: https://crohnsmapvaccine.com/ https://crohnsmapvaccine.com/ https://crohnsmapvaccine.com/faq/ https://crohnsmapvaccine.com/faq/ They've started safety trials in Crohn's patients. Hopefully it all works out and the vaccine proves to be effective.

epgui 5y ago
I think vaccines are an interesting therapeutic approach for IBD, but personally I don't feel very optimistic that we'll make it work in the near-term. The website you link to gives an excessively misleading / false impression that MAP is the cause of CD. There have been a number of whole microbiome sequencing studies comparing IBD/CD patients and healthy controls, and to the best of my knowledge, though there are demonstrable differences, no studies have established or even really "strongly suggested" a causative link with a specific microbe or even with a class of microbes. There are many other candidates that have been found to be associated with IBD, but none of them seem to be to blame on their own. If MAP was the cause of CD, we would easily know it from these studies. If we knew that MAP was the key, then treatment and prevention would become quite a lot simpler. We simply don't know that, and I'd go so far as to say that this will never work beyond a small subset of patients. IBD (both UC and CD) have a notoriously multifactorial aetiology.

jcrben 5y ago

The idea that diet doesn't affect the disease is incorrect. We've known for a while (40 years now?) that exclusive enteral nutrition has an effect size on Crohn's (seems to be pretty strong) and it's even similar to prednisone in treating flares particularly in children. https://www.cochrane.org/CD000542/IBD_enteral-nutritional-therapy-treatment-active-crohns-disease https://www.cochrane.org/CD000542/IBD_enteral-nutritional-th... A couple years ago a trial looked at replicating EEN with solid foods with promising results https://pubmed.ncbi.nlm.nih.gov/30550821/ https://pubmed.ncbi.nlm.nih.gov/30550821/ EEN is a first line therapy in adolescents but rarely mentioned to adults (and in North America less commonly mentioned to adolescents). I was treated at Kaiser and UCSF and nobody ever mentioned it to me. From the Cochrane article: "Whereas 62% of western European gastroenterologists use this therapy routinely for the management of pediatric patients with Crohn’s disease, only 4% of American gastroenterologists regularly use enteral nutrition in their practice (Levine 2003)" As a Crohn's patient I found it worked well layered on top of a biologic to get into quite deep remission. Aside from EEN, once you are in remission bowel habits are clearly manipulated by diets - being regular is caused by diet/hydration. I have pretty much perfect consistency right now and it's pretty easy for me to change that if I switch up my routine.

epgui 5y ago
"Diet doesn't affect the underlying pathology" in Crohn's Disease is definitely a simplification, but I believe it's a healthy and important one, as the harm caused by an elimination diet (or the cost of any given special diet) can easily outweigh its benefits. It's not in the human nature to accept that certain things are outside of our control, and IBD is definitely a case where people tend to delude themselves into thinking that some dietary intervention worked when it did not. In principle, we understand that an important part of the aetiology of CD has to do with interactions of the gut microbiome with a dysregulated immune system and a perturbation of the intestinal barrier. We know that the gut microbiome is somewhat plastic to dietary changes, though research findings regularly frustrate attempts at intentional modification. It would be more correct to say that there is no dietary change which is known to causally and intentionally alter the course of the underlying disease. That is not the same as saying that no relationships or correlations have ever been observed, or that dietary changes do not provide some symptomatic relief: on the contrary, we know that people who have a certain diet have a lower prevalence, or better subjective or even objective outcomes. Unfortunately, most attempts at taking patients from the worse group and changing their diet to match that of the better-off group fall flat on their face. This is a few years old and is not specific to CD, but it is a great example of the type of results we see over and over again in dietary intervention studies of this nature: https://www.cell.com/fulltext/S0092-8674(15)01111-3 https://www.cell.com/fulltext/S0092-8674(15)01111-3 Obviously this is an area of research of great interest, and if we could figure out a way to improve outcomes by making specific and robust dietary change recommendations, we would. It really is not that simple, unfortunately. I don't dispute the results of the studies you link, and I find the Cochrane meta analysis particularly notable, but I would caution that interpreting the results doesn't seem to me to be as straightforward as it might seem. I wonder whether controls are adequate (there is no placebo group here, for ethical reasons), I wonder whether the results can speak of longer-term outcomes, whether there is a selection bias (would you do this study with patients who have severe or advanced disease, or mostly with people who have milder clinical presentations?), whether the results might indicate to some degree the natural progression of largely self-limiting flareups, whether it's appropriate to compare induction of remission using corticosteroids with diet interventions (which I'd expect would have more of an effect on maintenance of remission, if anything)... I just don't think it's that simple. Remember that people with untreated CD will have flare-ups that occur and resolve spontaneously for some time before the disease starts progressing and surgery is required. That being said, non-elimination, generally-healthy diets, on the other hand, are always recommended, as is regular physical exercise.

enimodas 5y ago

I think railing against diets like you're doing here is harmful. Research is finally going in this direction, and as you can see, there's plenty of annecdata for people where dieting was beneficial, or even let them go into full remission. Sure, there's no diet that works for everybody, and diet doesn't help everybody, but that just means it's more difficult to do studies on, not that it's a wild goose chase.