bikinifap•

The same articles over and over. Those 50 large samples (or less) seems pretty pathetic for something in science. If one more Facebook "friend" shares this stuff I am going to...well, nothing, but still I will be annoyed. Everyone commenting there is like "yeah! eat this and that and you'll be fine! we knew it!" and really making me feel misunderstood as a CD patient- bums me out to have to tell friends and aquaintences that this has been studied for years and it is not at an exciting point yet.

47
kycubeOPStereotypically Gay Nurse•

At least it gets people talking about it.

But yeah, the constant "cures" and "causes" are getting old fast.

23
bikinifap•

Yes and no, for me anyway- I don't want people talking about it like this. It diminishes the seriousness of the disease. I have done every alternative therapy and diet under the sun (except stem cell therapy) and I still have a Chronic disease, looks like. I now have friends again popping up telling me to eat a/b and take supplement x/y. It isn't helpful to me that they are all thinking I have CD because I had too much fast food in my teens and can easily cure myself now knowing it is just a gut bug!

29
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

Took the words right out of my mouth.

6
bikinifap•

Now I know what Triggered means. lol

4
justhisguyouknowls ..•

My brother is a med student and he was actually helpful as to why the observations i noticed were true. I found the best judge of what I should and shouldn't eat was myself

3
j0bb1eCD 2014 (Humira/Entocort), MD (non-GI)•

I get that nonsense all the time too, even from people who know I'm a doctor. It's mildly infuriating.

2
bikinifap•

Interesting. Perhaps you even get it more- from people who want to teach you what they were hiding from you in medical school! cheers

2
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

I woke up to someone sharing it on my wall, at first I was kind of upset but I can't blame people for hearing or seeing things and wanting to "help". I read the article and commented "Yeah, I saw that article. I laughed reading it. Lol". I don't think anyone will be sharing it with me again.

7
bikinifap•

Lol. Yeah, I do appreciate that people want to help. But suddenly thinking of me and helping me by sharing an article they think they discovered is really annoying. I am not sharing the "cancer cures by vitamin C infusion" articles I read recently with my cancer friends.

1
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

That's because you know they've probably read it or been told by people about all the ways to "help". Lol I just nod and smile now when people try to give me advice about Crohn's, cause even we all know, everyone's Crohn's is different.

2
saberon2017CD 2012 - Pentasa•

bums me out

I just don't ever get sick of the puns, it's about the only thing good about living with Crohn's

7
-leeson•

Oh my god thank you - EXACTLY! And when you explain that it's like people look at you like "are you even trying to get better?"

3
Roy360360•

Glad to see that I wasn't the only one that thought it was too small. I'm guessing the time it takes to do the analysis is too long for them to look at larger samples?

2
j0bb1eCD 2014 (Humira/Entocort), MD (non-GI)•

The reporting on this article is nothing but clickbait garbage. This results aren't terribly shocking at all (if they are valid). S. tropicalis colonizes immunosuppressed people. How is Crohn's treated? Immunosuppression...

2
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

Why does this sound like a bunch of crap? I remember a similar thing coming out like 10 years ago.

15
kycubeOPStereotypically Gay Nurse•

Probably because it will end up being that way. The joys of auto immune disorders.

9
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

My dad was diagnosed back in 2002, he was looking into all kinds of weird stuff because of articles like this. None of it worked, he says eating the cultured dirt was the worst.

6
skeletor_999•

Sorry if this sounds pedantic, but most of the IBD research community no longer considers CD to be an autoimmune disease. In fact it's closer to the opposite, as there is a lot of evidence pointing towards an innefective immune system playing a huge part. The current understanding is that defects in genes responsible for the detection and clearance of bacteria in the body leads to bacteria being able to penetrate deeper into the gut tissue than it should. This leads to an immune response which causes things like inflammation.

4
rhyst13C.D.•

Google mycobacterium avium subspecies paratuberculosis

3
skeletor_999•

I'm familiar with this hypothesis as well. To the best of my knowledge there have been some studies that show that it is more common in the guts of IBD patients, but it is unknown whether or not it is playing a causative role. It could simply be that it is simply there for other reasons (eg an inflamed gut is an environment that allows this organism to proliferate).

I didn't mention it, as I only wanted to give a broad idea of the current opinion that is held by a lot of researchers. In actuality, things are far more complicated, and IBD is probably a suite of related diseases with different causes. There has been a lot of talk suggesting that CD and UC will be further subdivided into separate diseases in the future once, as we further refine our understanding.

6
raremageC.D.•

That's a theory among some in the IBD research community. I wouldn't be so bold as to say that most of the research community agrees with it.

3
skeletor_999•

You're making it seem like I'm pulling this out of my ass, or that the research community knows very little about the probable causes of IBD. While we have a lot of work ahead of us, it would be misleading to say that we haven't learned a lot about the underlying mechanisms that are likely at play.

This isn't a controversial view at all in the research community, and is frequently discussed in the literature and at conferences. The evidence is actually pretty overwhelming for it, but I didn't want to get bogged down in the technical details. We have already identified over 200 genetic variants involved in IBD, and a very common theme is microbial detection and clearance in the body. I'm on mobile right now, but I can find a few review articles if desired later.

2
kycubeOPStereotypically Gay Nurse•

That's not pedantic at all. It's a big change in how things are perceived! That's awesome.

2
campassi•

A question is why is the immune system allowing S. marcescens to take hold?

Without answering this question would it be likely the fungus would return after anti-fungal therapy?

6
ThatwhichisjaneF 29, CD Since 2000 | Flaring•

That'll be in the next study about 10 years from now.. lol

6
voidkilla•

Crying on the toilet :( they don't love us

8
MarkDA219•

I mean, by identifying it we're now allowed to design better experiments about the mechanism which is a large step in the right direction. Probiotics can be better designed and this can allow for better diet options too to ease everything. Of course it's not a cure, but a step is a step

2
j0bb1eCD 2014 (Humira/Entocort), MD (non-GI)•

The paper is horrendously misreported, regardless of whether any of the findings are actually valid. S. marcescens isn't a fungus, it's a bacterium. The fungus in the article is Candida tropicalis, a less common relative of the usual C. albicans, that most commonly infects immunocompromised people, so it likely colonizes Crohn's patients AFTER immunosuppressive treatment.

2
caretotry_theseagainC.D. 2009 | ileocolic stricture | Methotrexate/MMJ•

Nah, just the algorithm that knows you have CD, it's been trending for a while for me

5
PTMegamanC.D. since 1995. No meds.•

My father has been a Microbiologist for nearly three decades, specializing in fungus and how it interacts with human cells. I talked to him about this discovery today and over the phone he knew exactly what bacteria and fungus I was attempting to pronounce before I'd gotten past the first two syllables. His gut reaction is that if it takes a combination of those three microbes to create the film that causes inflammation, we'd only need to hinder one of the bacteria or the fungi, and the other two would be harmless. He reads MBio too. If he has any interesting thoughts I can share them here. It's something at least.

Still, I don't need anyone else telling me that probiotics will solve everything. I'm aware they can help a bunch, and my dietary changes have me feeling great the last few years, but this is still a chronic illness.

4
j0bb1eCD 2014 (Humira/Entocort), MD (non-GI)•

The paper is horrendously misreported, regardless of whether any of the findings are actually valid. The fungus in the article, Candida tropicalis, is a less common relative of the usual C. albicans that most commonly infects immunocompromised people, meaning it probably colonizes Crohn's patients AFTER treatment with immunosuppressive medication.

3
boneheaddigger•

I've seen the same articles popping up on Facebook. I also saw red flags pop up over Science Daily and The Daily Mail being the only articles covering it, and rather little in the actual study that points to solid proof.

Don't worry about what other people think your disease is. Do what you and your doctor agree to do and that's it. You'll only get yourself in trouble by following the advice of every crackpot telling you "just take this supplement, it worked great for me that one time I had a stomach ache" or "you should try following a Crohns diet...I told my naturopath about you and she said you just need to blah blah organic blah blah homeopathic blah blah more bullshit." Just smile, thank them for the advice, and then proceed to ignore it. They won't be the one doubled over in pain when the supplement causes constipation, and they won't be the one in the hospital when the homeopathic sugar pills don't prevent your next major flare up...you will. Don't take that chance. Follow real advice from actual professionals. Don't be swayed by friends on Facebook over random articles...

2
tkshow•

Honestly, this might be a reasonably interesting discovery. Sibling studies are a good first step in identifying underlying sources as they help close the variability in genetics, environment and diet. It's Case Western which is one of the top medical schools in the world. However, if you keep reading the article, they point to the fact that it might lead to future treatments. Nothing saying it will be a quick fix.

Now, the terrible part is about it being on facebook is every asshole naturopath and their cousin are claiming they can fix Crohn's with their probiotics and that they've known this all along and Western Medicine is finally figuring out what the ancient Eskimo mystics knew all along...... Now please buy my multi level marketing vitamin / antioxidant / probiotic and get cured the natural way. That shit is a little much.

But to make everyone happier, Stelara was FDA approved yesterday, targeting the (IL)-12 and IL-23 cytokines, which is another possible therapy for those who fail on Remicade or Humira.

1
feyrathMODIleostomy since '72•

link leads to a login-restricted site, via google. can you provide an alternate link please?

1
tkshow•

Give it a go now.

1
feyrathIleostomy since '72•

still requires a login, but at least it's direct.

1
tkshow•

Shit, sorry about that. I think this is good

I work in clinical research financing, my office must have access to medscape via some kind of ip address deal.

1