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thedeadhaji
39489 Posts
First things first. I do not have Crohn's.
However, I distinctly recall at least two TL.netters who posted about having Crohn's. I cannot for the life of me, remember who they are.
That is why I am writing this blog. I'm hoping that one way or another, the information here will find the TL.netters who have this disease. Alternatively, if you know anyone who has Crohn's and you think this may help them, please forward them the link. I have absolutely no vested interest in the site I am about to link you to.
http://crohnology.com/ http://blog.crohnology.com/im-going-to-be-demoing-at-medicine-20-at-stan
I will let the author speak for himself:
As some of you may know, at the age of 12, I was diagnosed with Crohn's Disease, an incurable, inflammatory disease of the digestive tract. After having several devastating flare-ups, I went on a quest to do anything I could to treat my disease by experimenting with numerous alternative and experimental therapies and diets (including intentionally infecting myself with parasitic worms).
When I realized that the information I had built up from this quest could heal other patients, I went on another quest: to meet as many patients as I possibly could and share the information I had learned with them. But I knew there were tons of other patients around the world who had gone through their own journeys and had extremely valuable information to share themselves. And by sharing it, they could heal more patients. And so I went on a new quest: to make it possible for Crohn's & Colitis patients around the world to share and learn from one another.
Crohnology is that quest. Crohnology is a place for people with Crohn's & Colitis to share the extremely valuable information each has accumulated on their journey to better health. And in turn, heal others by informing them of treatments that work.
I have no way of knowing whether this site will help a fellow user here, but I had to share this information in whatever way I could. I had the links open for a good 8 hours, unable to close it!
So TL.netter with Crohn's disease, I don't know who you are, but I hope that you're handling the ailment in stride, and I hope the this information may help you in whatever little way possible.
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Awesome, and thanks for the link, but me and my doctor agree that most of the alternative medicine for Crohn's is some seriously woogy shit, with purely anecdotal evidence.
Not going to go drinking breast milk at 25, not going to intentionally give myself ringworm via a patch. I'll stick with the stuff that's survived the FDA and some portion of the Scientific Method.
Of course, I also have good enough insurance to have the luxury not to try crazy shit.
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Oh, absolutely, like I said, thanks for the link.
I'm just a bit unnerved by him mentioning the alternative medicines.
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thedeadhaji
39489 Posts
Yeah I was a bit taken back by that as well. To each his own I suppose. (I guess some people probably do have it so bad that they'll try nearly anything once)
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Well, in theory it actually sounds sort of reasonable. Since Crohn's is an auto-immune disorder, where your immune system will occasionally attack those vile guts of yours for daring to invade your body, people think that having something in there that your immune system can attack is an improvement.
Unfortunately, intestinal parasites give you almost as bad of the runs as a crohn's flareup, so you can still be dehydrated, exhausted, get sick easier, and lose weight drastically.
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On October 13 2011 11:45 JingleHell wrote: Awesome, and thanks for the link, but me and my doctor agree that most of the alternative medicine for Crohn's is some seriously woogy shit, with purely anecdotal evidence.
Not going to go drinking breast milk at 25, not going to intentionally give myself ringworm via a patch. I'll stick with the stuff that's survived the FDA and some portion of the Scientific Method.
Of course, I also have good enough insurance to have the luxury not to try crazy shit.
qft even for ulc colitis.
to op: Thanks a ton for the link, i'll look through it but I agree with most of what JingleHell said. But, I do think that for people who are TLers recently diagnosed or suffering/w colitis/crohns this link may prove to be pretty useful ^^.
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On October 13 2011 12:12 Stealthypoo wrote:Show nested quote +On October 13 2011 11:45 JingleHell wrote: Awesome, and thanks for the link, but me and my doctor agree that most of the alternative medicine for Crohn's is some seriously woogy shit, with purely anecdotal evidence.
Not going to go drinking breast milk at 25, not going to intentionally give myself ringworm via a patch. I'll stick with the stuff that's survived the FDA and some portion of the Scientific Method.
Of course, I also have good enough insurance to have the luxury not to try crazy shit. qft even for ulc colitis. to op: Thanks a ton for the link, i'll look through it but I agree with most of what JingleHell said. But, I do think that for people who are TLers recently diagnosed or suffering/w colitis/crohns this link may prove to be pretty useful ^^.
ick, UC. I prefer my version, thanks. It's slightly gentler.
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I have Crohn's, thanks for this blog!
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Yeah, this is pretty interesting. I'm on a medical trial currently and have been mostly symptom-free for 16 months or so...just waiting on FDA approval!
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It's probably worth adding the Crohn's and Colitis foundation of America's webpage to the OP, http://www.ccfa.org. Id hope that most people diagnosed in the US are at least aware of the page, but it has been a solid resource for me, and Ive attempted to be involved locally with them.
I'm going on 4 years now after my diagnosis, and sadly there is no magic formula. It destroyed my senior year of high school and 3 years of college, and I'm still hunting for a method to control my symptoms. Thanks for the links and I'll at least take a look.
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A friend of mine had a good portion of his intestines cut out for Crohns. Thankfully he's doing OK and has gained some 40+ pounds since then (he was a twig beforehand) but it was certainly scary.
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