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Posted 6/18/2015 1:35 AM (GMT 0)
Inflammatory Bowel Disease:

62,824 Study's/Reviews

At 20 study listings per page, it yields 3,142 pages of published papers on the topic to scroll through and read for any with some time on their hands...

Of these papers 15,927 were supported by the US National Institute of Health

And yet not one single paper can actually show IBD is an autoimmune condition, genetic condition or pathogenic disease - or some combination. Let alone show anyone has a slight clue of what is going on.

I wonder how many actual "man" hours - errr sorry, "people hours" have went into trying to find the answer to the above.

Crazy.

PS - I read the other day that Ontario, Canada where I currently live now has the highest incidence of IBD in the world. Seems like the honour keeps shifting around Canada and other countries a lot lately. I can accept that study sizes, reporting and all that good stuff come into play - but what I cannot seem to accept is that usually when incidence of disease is on a very fast rise and shifting globally (hot spots), very quickly researchers start looking for bugs...

Anyway that's here nor there. I just can't begin to image all the man people hours that have gone into the hunt to understand and treat Inflammatory Bowel Disease and yet so very few of the public know anything more that it "give's people the $hits"

Drive me nutz sometimes on the awareness aspect.

Post Edited (Canada Mark) : 6/17/2015 7:48:39 PM (GMT-6)
Posted 6/18/2015 1:44 AM (GMT 0)
Interestingly when sorted by "published date" this paper seems to be the most recent:

Environment and the inflammatory bowel diseases
www.ncbi.nlm.nih.gov/pmc/articles/PMC3732155/
Posted 6/18/2015 2:44 AM (GMT 0)
Interesting where it say..."Stress may play a role in IBD pathogenesis but is, however, more likely to modulate rather than initiate disease activity "

...From things I've been reading/learning lately about how stress affects health (emotional/mental and physical stress and emotional/mental and physical health) it's too bad they suggest stress is more likely to modulate rather than initiate when in fact it does both, and not just with IBD but with all illness (physical and emotional/mental) it's also too bad that it's slow coming how doctors of all kinds including specialists are not being taught about overall health which includes the mind/emotions not just physical when it's so apparent (to me now more than ever) that it's all connected...I'm starting to think that because they clearly don't look at the whole picture when it comes to patients and only focus on the physical disease that is partly what keeps them from finding cures for many illnesses. Especially when you consider the mind-body connection is nothing new, it's been well known for centuries but seems to be unacknowledged more so in modern civilization/western civilization, no surprise that our civilization probably has the worst health issues on the planet compared to other parts of the world where both the mind and body are looked at as a whole because that's what they are.
Posted 6/18/2015 2:53 AM (GMT 0)
Some say that food is a big part, such as the "western diet". I really have a hard time believing that it has much to do with it. For one thing, there are plenty of people around the world who got UC that aren't on a western diet and even health nuts seem to also get UC. Second, no offense to Canadians, but I don't think Canadians can outdo us Americans when it comes to the "western diet" and yet Canadians lead the world in IBD.
Posted 6/18/2015 5:18 AM (GMT 0)
Ya, and what's really weird is the prevalence for IBD changes from province to province, first Alberta was the highest, then Nova Scotia and now according to Canada Mark, Ontario, what the heck is up with that????

I think diet/foods can play some role as well though, weather it be pesticides or soil or who knows what but I wouldn't be surprised if diet/foods in many ways or even just some may play some role as well, same for the processed crap foods, I heard recently that in the US they are starting to ban a lot of the crap that's being put into processed foods yet surprisingly Canada is not following suit which really burns me, not that I really indulge in processed foods but still for the sake of health and considering how anal the Canadian government can be about many things I'm shocked this isn't one of them...hoping that changes sooner rather than later.

The earth is a pretty hostile environment unfortunately our health (complete health) gets sacrificed because I honestly don't know a single soul that doesn't have some kind of health issue (and sadly that includes a big range of ages too) from infants to the elderly that I know.
Posted 6/18/2015 8:47 AM (GMT 0)
One of the more recent theories (as I'm sure you have all read) is that our environment is now too clean and that means that our immune systems do not develop properly which causes problems pretty much accross the board, IBD and many other conditions.

Also here is some interesting info on site specific immunomodulators which will be the next generation of treatment for autoimmune diseases like IBD - http://www.qubiologics.com/what-we-do/how-ssis-work/
Posted 6/18/2015 11:24 AM (GMT 0)
Last night I watched a TV commercial for a what looked to be a bacon and cheese burger with hot dogs AND potato chips on top and underneath the burger patties... Was from Hardy's or whatever that restaurant is called in the states... my stomach grumbled just watching it - but my mind said darn.... I bet that tastes pretty good!


@John - thanks. There is some threads on SSI on here I think. And one person in the trial if I remember correct.

@PB4 - Thats what I was thinking PB - first Alberta, then Nova Scotia and now it's Ontario. The article that states this is from 2015. It's written by a microbiologist. I can't post the link because you have to log on and it's a pay for thing.

Anyway I'll type out what it says. I just re-read it a moment ago and noticed it is speaking incidence in Children under 18 and says "one of the highest" - and not "the highest": But compared to the children under 18 in other places in Canada Ontario would be the one of the highest if not the highest - slightly confusing stuff!! ha. Does not matter - to many kids are getting sick. That's the bottom line.

"Canada has one of the highest incidence rates of Crohn's Disease in the world. Alarmingly the trend shows increasing incidence and earlier onset.

In Ontario they found that the age and sex standardized prevalence (number of cases at one point in time) per 100,000 population of paediatric IBD increased 42.1 (in 1994) to 56.3 (in 2005). The incidence (new cases per year) per 100,000 increased from 9.5 (in 1994) to 11.4 (in 2005). Statistically significant incidence increases were noted in 0-4 year olds (5 percent per year) and 5-9 year olds (7.6 percent per year), but not in 10-14 or 15-17 year olds. The experts concluded: Ontario has one of the highest incidence rates of childhood onset IBD in the world, and there is an accelerated increase in incidence in younger children."

Another study found comparable numbers and concluded "Overall the results of this study show the clinical spectrum of IBD continues to evolve, because paediatric IBD now effects all races and ethnicities as well as rural and urban populations with a similar frequency, pointing to changing environmental factors as increasingly important in the pathogenesis of IBD."

-----
The author of the full article itself of course was pointing to a possibility that bacteria are the expanding "environmental" factor because of the shift in the age, location and cross over to ethnic, rural and urban population with similar frequency.

Post Edited (Canada Mark) : 6/18/2015 5:31:00 AM (GMT-6)

Posted 6/18/2015 5:05 PM (GMT 0)
62,824 studies is a lot, but what percentage of those are to do with IBD etiology? For an even more meaningful comparison, you would need to compare the number of man hours which has gone into researching the etiologies of other diseases.

I'm personally not bothered whether members of the public think IBD is a sh!tting disease or not. To be blunt, I would rather people were more aware of Asperger's than Crohn's, as the former has affected my life a whole lot more. And I DON'T mean thinking of Asperger's as a "gift": that is completely pernicious nonsense perpetuated by romantics, half of whom probably don't really have autism in any form.
Posted 6/18/2015 5:34 PM (GMT 0)
Any disease/disability is terrible to have and there's no comparing one to another, illness is illness and one shouldn't be made out to be more important than another...awareness of ALL diseases is important.
Posted 6/18/2015 5:48 PM (GMT 0)
I know, pb4. I shouldn't have gone in for comparisons, you're right. I'm just feeling very frustrated with the whole Asperger's thing and the lack of support and understanding from pretty much anyone who isn't a trained professional specialising in autism, and the latter are as rare as hen's teeth. (As an aside, I would probably have far more support available if I was a child and not a 40-year-old adult.)

But I can understand why people need understanding and support for IBD as well. I was living in a bubble when I had the worst of it, but most people still need to make a living even during the bad times. So yeah, sorry if I offended anyone with my comparison.
Posted 6/18/2015 5:54 PM (GMT 0)
I think for many what ever ails them that is intrusive in their lives is terrible and there's lack of support and info on pretty much all disease's...I feel for anyone (like you) that has multiple health issues regardless physical/mental/emotional there's no comparison they're all terrible.

I don't blame you for your frustrations one bit and you're entitled to vent about them as we all are, wish it made a difference, ha if only that was the cure for all our issues!!
Posted 6/18/2015 9:35 PM (GMT 0)
Still wound up from Gary's post... must think calming thoughts... must think calming thoughts... ad infinitum... >.>

Thanks, pb. Yeah, if only venting was indeed a cure: I'd have been healthy as an ox years ago if it was! >_>
Posted 6/18/2015 9:43 PM (GMT 0)
LOL NCOT, I was just on that last post you're referring to and all I could post was "LOL" cuz with that post I was on the outside looking in rather than being in the post (I've had my frustrations with Gary too as you know) from now on I'm LOL-ing the negative because that's about the only attention negative deserves, if that.


Yup, think calming thoughts, no one is worth getting upset over....learning a lot from the meditation book and the therapist which did a guided meditation with me yesterday in her office....that's where I'm going to from now on when I notice things starting to upset me...I'm going to my peaceful place because I realized no such place exist in life, so I have created my own to go to and it's great! Will things in the present and future still bother me...yes of course, but will I now be able to except those things better...YES and that's the purpose of making my own peaceful place via meditating daily so that I control my feelings and I stop letting others control them.

Happy thoughts to you NCOT, we gotta do what we gotta do to try and hang on to some sanity in our lives...and find more of it (cuz mine has been way out of balance for far too many decades now).

And sorry Canadian Mark, really didn't intend to high-jack your thread with my response to NCOT here!

:)
Posted 6/18/2015 10:17 PM (GMT 0)

Canada Mark said...
Inflammatory Bowel Disease:

62,824 Study's/Reviews

At 20 study listings per page, it yields 3,142 pages of published papers on the topic to scroll through and read for any with some time on their hands...

Of these papers 15,927 were supported by the US National Institute of Health

And yet not one single paper can actually show IBD is an autoimmune condition, genetic condition or pathogenic disease - or some combination. Let alone show anyone has a slight clue of what is going on.
...

It is definitely autoimmune. I am not sure how you got the idea that research and medical science had not established that basic fact.

If you are just going to mis-state things and/or twist the truth, why other. Many studies have demonstrated a definite genetic component in a large percentage of cases. This is both family-gene-association studies, and specific gene-loci studies. In animal models many of these genes have been actively manipulated to unlock mysteries of IBD.

Other studies have also conclusively demonstrated environmental links and risk factors. And others have shown the gut microbes are certainly involved in some way.

When science conservatively states that the combination of components in the etiology and progression of IBD is "not completely understood", this is nowhere you suggestion of nobody having even "a slight clue."

Give me a break, and stop talking mouth-D
Posted 6/18/2015 10:31 PM (GMT 0)
pb - "LOL" perfectly sums it up >_>.

You do sound a lot better within yourself, I have to say. It makes me think that perhaps I should give meditation a go. I'm strangely reluctant to even try it (or anything else), 'cos a large of part me just feels like I can't cope with any more failure in my life: I've failed at so many meds and therapies already, it ends up being a source of depression in its own right. I think I need to be in a slightly better place than this first, but when I am I'll give meditation a go. Like I said, you do seem to be a lot better within yourself.

DBwithUC - Why did you cross out your entire post? <_<.
Posted 6/18/2015 11:57 PM (GMT 0)
NCOT, you can google you tube meditation to help you, there's even 3 minute ones (therapist told me to start with 3 minutes a day over the next few weeks until I see her again). Expecting to fail at something is a guaranteed fail right there, I get where you're coming from and why you perceive things the way you do (I was the same way) it's so easy to look at everything under the sun in a negative way and harder to see positives which is why I went for help in the first place, because I'm tired of negativity it's wasted energy that I'd rather apply to a more positive perspective, I've done negative long enough and it's gotten me no where good, only made things worse.

You can't meditate wrong, it's from within, all you do is sit with dignity, legs uncrossed or lay quietly and focus on your breath, your mind will wander, it's natural but the point is to learn how to gear the focus back to your breath (which is why you start out doing it for such a short length of time)...meditating is all about yourself, finding yourself that got lost in stress decades ago and learning to accept stress by the means of being able to handle stress better and better, the only way stress will be completely gone is when we die so you decide if you want to live in a way that you can't manage stress well or continue living the way you have been (which is highly stressful). You're alive, you mine as well try and find some peace in yourself so you can find some peace in life so that life doesn't make you feel constantly angry-sad (I'm sick of feeling those 2 emotions and nothing else, I'm betting you are as well)

It's not about changing yourself, it's just about recognizing that you can feel genuinely happier and deal with stress better, that's it, that's all....just reconnecting with the positive person you have inside you that's been cooped up in darkness (angry-sad) for probably way too long.

I think DB was trying to make a point, wanting to respond to Canada Mark's post but in a venting way...maybe even sitting on the fence about the reply IDK, just m take on it...with me I usually bash away at the keyboard with conviction then re-read what I wrote before submitting it and usually just deleting it all together, that was hard for me to do at first but became easier when I'd consider others are also suffering, not just me...we lash out so easy at people based on how we feel inside because life = stress of all kinds from the second we're born actually... it's a matter of how you deal with all the stress that will determine still being able to be a generally happier person.
Posted 6/19/2015 2:50 AM (GMT 0)
@deb

Show me one single study that demonstrates IBD is an autoimmune condition. Just one.... One single one... That simple. Not gonna happen.

Same holds true at the moment for pathogenic though. And the environmental "factor" is completely unknown. All this translates into No Clue.

Go ask your GI, and then go ask another, then another. Ask 3 you'll probably 5 different answers. All "opinions". Note how the consensus has changed even just over the last 2 years from researchers.

I stand by what I said. But again it does't really matter anyway lol. It's good to remain open to all three (autoimmune, genetic, pathogenic). Really it does us a disservice to dismiss any of them at the moment till proof shows otherwise.

@gary, personally I like what you said. And that was funny... in regards to the Canadian not outdoing the Western Diet thing, but I never really thought about it from that perspective before... Many places in the world at one point in time have held the prestigious and much sought after "highest incidence" award, and many of those places seem to be areas of relatively decent far less westernized diets. Heck, even some rural farm areas have held the title... not much western diet around those joints. Interesting comment you made really. Thanks.

Post Edited (Canada Mark) : 6/18/2015 9:01:14 PM (GMT-6)

Posted 6/19/2015 2:58 AM (GMT 0)
@NCOT

/www.youtube.com/watch?v=IqwoxUdT6rc

You could maybe try this meditation. It's kinda goofy but I swear it relaxes me like no tomorrow. Especially when you copy it to an mp3 file and play it through headphones. The tone is much, much deeper and relaxing versus computer speakers. The rest of the world, stress, anxiety etc just melt away. There's an evening one to off to the right on the top.

I like to play this while I go for a walk or drive or maybe ride my bicycle down a pathway by the river. Keeps stress levels low and gives me something to focus on.

If you want to and need help converting it to mp3 let me know. The evening one puts me to sleep - and work great with relaxing as well.
Posted 6/19/2015 3:10 AM (GMT 0)
I think there is something to the less sunshine thing. Is it possible that Canada's rotating IBD problem is somehow perhaps correlated with a rotating lack of sunshine due to changing weather patterns?
Posted 6/19/2015 3:12 AM (GMT 0)
For NCOT...


http://www.jkp.com/jkpblog/2011/01/art-chris-mitchell-aspergers-syndrome-and-mindfulness/



http://www.tm.org/meditation-techniques
Posted 6/19/2015 4:39 AM (GMT 0)
IBD is autoimmune because the immune system is attacking the host... its as simple as that...that has not been up for debate for over half a century. Theyve even identified a number of anti-human antibodies in IBD patients. Not sure where youre coming from on this CM?

And wrt environmental factors, many many things have been associated with IBD...artificial sweeteners, emulsifiers, etc. Why are you disregarding these?

Also, Ontario has had the highest incidence for many many years. At least since I was diagnosed in 2009. Based on official stats at least.

Im also sure you saw the recent study that showed that new immigrants to Ontario adopt the incidence rates of Ontario, establishing that it is an environmental factor within Ontario
Posted 6/19/2015 3:22 PM (GMT 0)
What if IBD is just some small release bacterial infection they've yet to identify? Would explain clusters. Could even be a strain many carry that's kept in check by beneficial bacteria normally and so is always there but grows unchecked when something wow disappears. Could it be that simple?
Posted 6/19/2015 4:00 PM (GMT 0)
I don't think it's that simple. I think it's many things and it's not the same for everyone. I think I contracted something that sent my immune system into overdrive. I don't think any diet or probiotics will touch what I've got going on. Not even the strongest medications touch whatever i've got going on. It's not responsive to TNF blockers, that's something interesting and awful. I have no hope for myself. For others, maybe it's something "simple".
Posted 6/19/2015 4:16 PM (GMT 0)
pb - Admittedly 3 minutes a day sounds doable, even for me. I know 30 minutes or even 15 minutes doesn't sound long, but at the moment I am struggling with even showering. I do do it, but not without putting it off for an hour first or something. (A shower is a bit longer for me than a normal person, because I usually have to give an extra 10 minutes for changing the bag afterwards. Plus an extra 5 minutes for rinsing, because my shower pressure has less force than a punch with a feather -_-)

I couldn't agree more about being fed up of only feeling anger, sadness or loneliness. I actually want to feel more positive emotions, but I feel blocked from feeling them. To some extent, I've been like that my whole life, but it does seem like it's something which has got much worse. I feel only bitterness and rage at my family; I desperately want to have a few people I can feel love and affection for instead. At the moment it just feels like I am blocked from having those feelings. On the other hand, I don't exactly have a load of people I'm close enough to feel anything for: I spend 99.9% of the time in my own company :-/

Anyway, thanks for the links!

CM - Thanks for the video. I normally listen to Mix FM in the car >_>. But for walking... maybe. I never thought about that, really. I've got two mp3 players, both of which I don't use any more (I've been saying I should get some new music for the past 5 years now.) It's a possibility, particularly as anything has to be better than just listening to traffic noise.

As for the rest of the thread, I'm staying out of it... >.>
Posted 6/19/2015 4:29 PM (GMT 0)
Maybe it's normal to be alone all the time. I am always alone. I have barely any friends, the few I do have are not the dependent type that you would imagine when you think of "friends". They are more like acquaintances who call when they want to do something but then they choose to do something else if it comes up and it's more appealing. I don't speak to my family either, they are swindlers who put money before people and favor people with children. As a childless person, I have never gotten any support from them neither emotionally or financially. They are the type who shouldn't have had children but did because they wanted to do what society says is acceptable. I think it's all perspective. I could sit around and feel bad for myself or I can move on. I've moved on. I am better off without these types of people in my life. Being alone isn't too bad, except when you need someone dependable. There is always the option of paying someone when you need that. It is a bummer that no one will help me out for free but that's life, lol. I am a recluse, I don't do much for anyone because of my UC, so what can I expect from people? People generally only do things for themselves ie. they need something from you in the future... I've got AAA if my car breaks down and I've got a job so I can pay a car service to drive me because i sure as hell do not have a real life person who would pick me up if i were in crisis. there's my big fat whine of the day :)
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