Domain: ccfa.org
Stories and comments across the archive that link to ccfa.org.
Comments · 6
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Re:Getting enough Vitamin D?
BTW, a post from someone else on a Crohn's forum on vitamin D:
http://www.crohnsforum.com/showthread.php?t=4951
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This video talks about the importance of vitamin D (which is best absorbed by humans from sunlight) for health.
http://articles.mercola.com/sites/articles/archive/2008/12/16/my-one-hour-vitamin-d-lecture-to-clear-up-all-your-confusion-on-this-vital-nutrient.aspx
The video mentions how it is thought that a vitamin D deficiency is thought to lead to more autoimmune diseases (like Inflammatory Bowel Disease). They showed how more northern climates (which have colder climates/less sun) often have greater occurences of things like colon cancer and MS than southern climates. Vitamin D was also explained to be anti-inflammatory.
This was something new to me. It makes some sense to me as it seems that Canada has one of the world's highest rates of IBD. It may have a higher rate than the US due to a colder climate and less sunlight, even though the diets are fairly similar.
While vitamin D needs differs, the video said that we should all be trying to get something like 5,000 IUs a day, but some people may need double that or more. The daily recommended intake though is currently like 400 IUs. It recommends sunlight as the best source of this (and says that as long as exposure is not excessive, it is safe for you) or that if you take a vitamin make sure you are taking it in the form of D3 (cholecalciferol). D2 is another form that is synthetic and an inferior form.
Has anyone else heard anything about this before?
"""I have not watched the video. That post is just a top match on a Google search on "vitamin+D"+Crohn's.
Posts in that thread then link to:
"Vitamin D deficiency tied to increased IBD activity, reduced quality of life"
http://ccfa.org/reuters/vitaminD
"Vitamin D deficiency is common in patients with IBD (Crohn's disease and ulcerative colitis), but whether vitamin D deficiency parallels disease activity or adversely impacts quality of life is not known, Dr. Alex Ulitsky and colleagues at the Medical College of Wisconsin in Milwaukee point out in a meeting abstract." -
My heart goes out to him...
As a 32 year old fellow sufferer of an extremely serious case of Crohn's Disease, I can tell you that it is a terrible battle: every day I face large amounts of pain and feelings of illness (e.g. my hemoglobin is 70 due to internal bleeding and should be around 170, making it difficult for me to do anything without feeling exhausted - walking up a flight of stairs nearly makes me faint). Crohn's has stripped me of my quality of life: the limitations it places on me make every day a challenge and it has stripped me of many of my dreams. Indeed, it got so bad that, seeing it as my last option, I tried to kill myself last May to escape from the ravages of this disease (I would have been successful, but I was discovered before I died). Right now I wait for surgery to remove 1 m of my intestines, which should help the situation, but euthanasia is still an option I consider to continue and will pursue if the surgery does not improve my quality of life.
Crohn's research is seriously underfunded, and the cause of this disease or its sister disease, Ulcerative Colitis, is not known. Also, the incidence of Crohn's appears to be on the rise to the point where some countries (e.g. Scotland) have deemed it a near epidemic. I urge you, if you like O'Bannon's work, to make a donation to the Crohn's and Colitis Foundation in your country:
USA: http://www.ccfa.org/
Canada: http://www.ccfc.ca/ -
Re:What did they think it was?
Crohn's & Colitis are linked for a reason, in fact the way to work out if you have Colitis is usually to test for Crohn's and if the test is negative you probably do (although you might still have Chrohn's).
Saying that, C&C are "infamous" for being undiagnosed/misdiagnosed.
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Re:Chronic pain and suicide
Don't get scared--fear is the mind killer, after all. Get informed.
The course of Crohn's is unpredictable. Bad cases can require surgical removal of the affected parts of the intestines. On the other hand, it has been 18 years since I was diagnosed and treated with suitable meds. During that time I haven't experienced the kind of agonizing abdominal pain I had the 9 months prior (along with diarrhea, fatigue, appetite loss).
To get an idea of the pain, make a tight fist and hold it until it starts to hurt--then keep holding it for another hour, release for a few minutes, and tighten your fist again. Now imagine it's the muscles in your digestive tract, over which you have no conscious control, constantly repeating this.
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Re:Listen up, people
I suffer from Crohn's Disease, along with approximately half a million other Americans. To summarize: Crohn's is an autoimmune disease of the digestive tract which causes inflammation in various places. When you have inflammation in your intestines, that part of the intestine cannot reabsorb liquid.
I don't have a bad case. But there are some horror stories out there: people who have to go 10-20 times a day, people who end up needing permanent ileostomies (a surgical bypass of the end of the intestines), etc.
Even with my relatively mild case, I have to take three Sitz Baths a day, two showers a day, and cleaning up after I go is not fun on top of that.
This toilet seat? Sounds like it would be fantastic for me and others like me. It could probably save me 20 minutes a day, at least. If my health insurance covered it, or I could afford the thing, I'd buy one tomorrow. Seriously.
And one in 350 people in America have this problem along with me. And the numbers are rising. (The disease was unheard of pre-20th Century -- not from lack of diagnostic methods, from lack of existing. There's a growth curve that is followed in developing countries; a Crohn's specialist I spoke to said that there are varioius studies underway to figure out what parts of our diet changed enough to create such an outbreak -- he hinted at processed sugar being a leading candidate. Unfortunately I lack a citation here, but the head of the Crohn's & Colitis center at Mass General seems like a pretty good source to me.)
I can see these things selling very, very well if they can bring the price point down just a tad, or convince health insurance to cover it for people in scenarios like mine (even partially).
So, yeah, I'm unhealthy -- but it's not my fault, and one of these things could make quite a difference. -
Because we do
I can't believe that some people are actually considering this to be useful. I am having even more trouble comprehending the fact that people think that these advances are actually a GOOD thing (advances probably isn't the best word).
Because it could save MY life, that's why. I have Crohn's Disease. I've had 4 surgeries in the past 2 1/2 years. I take medicine every single day for stabbing, throbbing pain in my gut. I hurt every time I have to go to the bathroom, or walk around for a while, or even just sitting in a chair. I've lost about a foot of intestines, and stand to lose more. Sooner or later, there won't be any more to take out. After one surgery, my bowel perforated, spilling the contents into my abdominal cavity, giving me septicemia (blood poisoning) and nearly killing me. I spent 4 months of hell recovering from that.
Why does any of this matter? I'm currently on Remicade treatment, which is a monoclonal antibody. This medication, given intravenously a few times a year, has enormously improved my symptoms. The pain goes away, my appetite is better, I sleep better, and I feel like a normal person. If researchers had thought to themselves Why THE HELL would we want to change our genetic makeup? then the chances are that I'd either be in the hospital or so high on painkillers that I couldn't see straight. Remicade has changed the genetic makeup of my immune system, and I love it. It has made my life better and more enjoyable. I've dedicated my life to finding a cure for Crohn's Disease, and it will probably involve changing at least a part of the genome of the patient. If it gives them less pain and a better life, it's completely worth it, luddites notwithstanding.
Matt