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11-08-2014, 05:19 PM   #301
GinnyNinjaGirl
 
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Have you heard of the exciting QU Biologics Crohn's trial in Vancouver? I wish i was closer because it sounds so promising.
No! I hadn't heard of it but I will definitely look into right now - thanks for the hint!

*quickly changes into tights in phone booth, and she's off to google*
12-09-2014, 09:59 AM   #302
nogutsnoglory
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Sigh. Wish there was a dating site for LGBT with disabilities. I swear if I knew how to make websites I think id create one because the demand has got to be there.
12-11-2014, 11:43 PM   #303
durwardian
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Sigh. Wish there was a dating site for LGBT with disabilities. I swear if I knew how to make websites I think id create one because the demand has got to be there.
LOL, make one! Why not?
12-11-2014, 11:50 PM   #304
durwardian
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No! I hadn't heard of it but I will definitely look into right now - thanks for the hint!

*quickly changes into tights in phone booth, and she's off to google*
I chatted with one of the participants. Late starts were not very long-term, and thus didn't get the benefit of the entire study. Some benefitted from the meds, some didn't, as is usual with Crohn's. It kind of underlines most people's thoughts about Crohn's being a myriad of diseases with similar symptoms, all bunched together due to a lack of proper scientific studies into cause.

What has been very very interesting is the genetic connections to folation cycles and processing. Many people are discovering that mutations in DNA bring enzyme and amino acid faliures, which in turn cause undesireable chains of events. Depending on how strong or weak the rest of the body is, how your immune system is doing, your diet, and many other factors... this chain of chemistry and reaction can destroy protective linings, cause the body to attack itself, and many other Crohn's related problems.

Never give up looking for the cause. Genetics is making new breakthrough's all the time.

Right now MillenniumPGT is doing a MAPP test that determines how you react to drugs and certain enzyme functions. Mine was free, so depending on your insurance, ask at the primary care doctor and see if the test is available. Mine showed that my complete folate cycle is out of order, and that the enzymes and amino acids for processing things is also out of order. Between these two, all the symptoms I have can be explained. The fix is now to avoid certain foods, supplement the missing amino acids or enzymes, and monitor blood closely to be able to react to the changes my body presents.

I have high hopes, but I always have high hopes.
12-15-2014, 09:41 AM   #305
Kit
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Hi hopes are good! We have to have hope.
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12-18-2014, 11:01 AM   #306
nogutsnoglory
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Durwardian have you seen my signature on the free genetic testing by 23andme? They test 600,000 SNP's including folate mutations. I have the MTHFR mutation and have been doing better since I discovered that and switched to bio active forms of b12 as methylcobalamin and folate as L-methylfolate.
12-18-2014, 01:05 PM   #307
durwardian
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Durwardian have you seen my signature on the free genetic testing by 23andme? They test 600,000 SNP's including folate mutations. I have the MTHFR mutation and have been doing better since I discovered that and switched to bio active forms of b12 as methylcobalamin and folate as L-methylfolate.
Signature? No, not sure what you mean. I thought 23andme was no longer doing business? The last test was free, which is now the only way I can do things. My health has ruined me. The rotten corporate insurances and pharmacy giants came and burned my village to the ground, leaving nothing behind.
12-18-2014, 03:24 PM   #308
nogutsnoglory
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23andme has a free DNA analysis for those with IBD, see my post here http://www.crohnsforum.com/showthread.php?t=67893

I'm sorry you are suffering so much but maybe the genetic analysis will help you shed some light on your health.
02-09-2015, 10:30 AM   #309
nogutsnoglory
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Alabama becomes state 37 to embrace marriage equality!

http://www.npr.org/blogs/thetwo-way/...to-gay-couples
02-09-2015, 10:46 PM   #310
durwardian
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Alabama becomes state 37 to embrace marriage equality!

http://www.npr.org/blogs/thetwo-way/...to-gay-couples
And..... you spoke too soon. As usual, the State that refused to accept equality of African Americans, now is refusing to bow to the Federal Judge. A couple of people got Justice of The Peace marriages. But the offices that were supposed to issue licenses just stayed closed today in protest of the law.
When are we going to cut off a few States from the United States of America? I think we should start with Alabama. Inbreeding is showing...
02-10-2015, 06:35 PM   #311
nogutsnoglory
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Some of the counties are issuing while others aren't. Its a mess because the chief justice is overstepping boundaries and violating the law.
03-10-2015, 12:21 PM   #312
brooklyn23
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*waves* Hey everyone. I'm a queer gray-ace lady living in Brooklyn.
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Queen of the magical mystical utterly-debilitating ovulation pain.

Higher. Further. Faster. More. - Hopeless comic book nerd
03-10-2015, 01:52 PM   #313
nogutsnoglory
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Hey Brooklyn welcome aboard! Take a look around we have some threads on asexuality here.
03-12-2015, 01:04 PM   #314
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Hi all! I'm Graham, I'm from Rhode Island, I'm gay. *waves*

....I feel like there's more I should say but I'm just gonna leave it at that. (I said on my other introductory post that I'm bad at talking about myself and I stand by that. :P)
03-17-2015, 08:31 AM   #315
Kit
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Welcome Brooklyn23 and Graham! I hope you can find some support from here and many other forums!
03-29-2015, 03:49 PM   #316
Izzie
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Hey there!
I thought I'd pop in here and introduce myself, though I've already been around the other forums a bit.

Name's Izzie. Gay girl. Hiatus hernia, GERD, bile reflux and some yet to be diagnosed IBD/IBS/who knows what.

Hope you're all doing well!
03-30-2015, 12:39 AM   #317
nogutsnoglory
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Welcome Graham & Izzie, how are you guys? Welcome to our forum. Take a look around and feel free to bring up any topics that may be relevant to you.
03-30-2015, 09:03 AM   #318
Kit
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Welcome Izzie!
04-18-2015, 07:30 PM   #319
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Hello I'm alyssa but I like to be called aly. I'm a 28 year old lez. I have severe fistulized Crohn's disease and colitis. Currently on Cimzia and prednisone because in the five years I've been sick I just can't catch a break. I hope to make some new friends here that know how it feels.
04-19-2015, 06:21 AM   #320
nogutsnoglory
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Hi Aly, welcome to our section of the forum! I'm sorry to hear that you've been struggling I know how awful fistulas can be. If Cimzia isn't helping might they try remicade if you haven't already? Remicade is the big guns for fistulas.
04-19-2015, 09:18 AM   #321
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Yes that was the first one they put me on and after 6 months I had a severe allergic reaction and had cardiac arrest. Needless to say I'm traumatized lol
04-20-2015, 08:07 AM   #322
nogutsnoglory
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Oh gosh that's so scary. It's crazy how one drug is a miracle for one and a nightmare for the other. They have a few options now so if this continues to fail maybe there are other options. Is that your girlfriend in the pic? How are you navigating the relationships side with IBD?
04-20-2015, 10:10 AM   #323
alychi24
 
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It's is. It's very tough because when the disease is severe it doesn't just affect me. We've been together three years and it's been a real struggle.
04-20-2015, 11:09 AM   #324
Lisa
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Welcome all new members to this support group!

If anyone in the NY area will be attending the Empire State Pride Agenda event in Albany, NY please feel free to drop me a note and we can say hello.....I will be working in the area and would love to meet to put faces to screen names!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-21-2015, 03:05 PM   #325
nogutsnoglory
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I'd love to Lisa, it's so hard for me to get around because of the fatigue. If I do get to it which is unlikely I'd love to meet you.
04-24-2015, 08:47 AM   #326
Kit
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Welcome Aly! I hope you can find some relief. I finally had to have surgery to remove the fistulas. Much better now!
04-24-2015, 08:53 AM   #327
nogutsnoglory
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Glad you're doing better Kit. Fistula surgery is tricky but I'm very pleased to hear you think it's on the right track and not a fistula track!
07-02-2015, 07:00 PM   #328
nogutsnoglory
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Anesthesiologist trash talks crohns patient during colonoscopy and the man won a $500,000 law suit. They called him "gay", wanted to punch him, called him an idiot among other things.


http://www.washingtonpost.com/local/...4b5_story.html

It's really messed up and disturbing but 500k really? The woman should be fired and there should be some way of making it up to him but that's excessive.
07-03-2015, 07:25 AM   #329
UnXmas
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Anesthesiologist trash talks crohns patient during colonoscopy and the man won a $500,000 law suit. They called him "gay", wanted to punch him, called him an idiot among other things.


http://www.washingtonpost.com/local/...4b5_story.html

It's really messed up and disturbing but 500k really? The woman should be fired and there should be some way of making it up to him but that's excessive.
I'm seriously considering recording my doctors appointments. It would not surprise me at all if some of the doctors I've seen said completely unprofessional things when they knew I'd have no memory/awareness of them. I don't think this patient deserved $500,000 for his experience, but a figure like that may mean other doctors think twice about doing similar things.
07-03-2015, 07:11 PM   #330
nogutsnoglory
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I'm surprised it was legal for him to record. I think in most places this would be deemed illegal. It should be perfectly legal because they should only be doing their job but the law is complex.
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