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Crohn's Disease Forum » Support Forum » Recently Diagnosed Support Group


08-26-2016, 11:50 AM   #1
Julia S
 
Join Date: Aug 2016
Location: São Paulo, Brazil

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Recently Diagnosed Support Group

About this Support Group

As someone recently diagnosed, I think it would be useful to have a place to discuss first treatment options (eg: step up vs step down), anxieties, tips and recommendations as to how to live with IBD and to receive some positive encouragement from those who have been struggling with this disease for longer.

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AllGood, Jess_inToronto's Avatar Jess_inToronto, JoeSoup's Avatar JoeSoup, Julia S, maryshreve, ronroush7's Avatar ronroush7, sfike, tabbycat66
08-27-2016, 05:31 PM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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Support here
08-27-2016, 05:41 PM   #3
Julia S
 
Join Date: Aug 2016
Location: São Paulo, Brazil

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Hi Ron! Hope you are doing well!
08-27-2016, 05:48 PM   #4
ronroush7
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Location: vienna, Virginia

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Thanks. I have been having a lot of leg pain recently. Urgent Care wasn't much help. Going to gi. May or may not be reaction to Humira. Hope you are well.

08-27-2016, 07:40 PM   #5
Julia S
 
Join Date: Aug 2016
Location: São Paulo, Brazil

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Have they ruled out a blood clot? How long have you been on Humira? And how long with Crohns, if I may ask? As a newly diagnosed person, I wonder what the prognosis is like for most people. Did your disease start off as mild and then progress? Have you tried other anti-TNFs and immunosupressants? What was your best experience so far?
08-27-2016, 08:09 PM   #6
ronroush7
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Location: vienna, Virginia

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I was diagnosed in 1990 with Crohns. I have wondered a few times recently if I had a mild form of it before then. I had surgeries in 1989 for both a fistula and hemorrhoids. The surgeries weren't healing properly. A surgeon determined it was because I have Crohns Disease. I have a history of fistulas. The first biologic I was on was Cimzia and that was the best one I was on. I have also been on Remicade, Stelara and right now Humira. I have wondered about a blood clot

08-28-2016, 07:29 AM   #7
Julia S
 
Join Date: Aug 2016
Location: São Paulo, Brazil

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What was your longest period in remission? Were you in remission before the biologics?
08-28-2016, 07:32 AM   #8
ronroush7
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Eight years. I was in a clinical trial. I was given a placebo but for some reason I still went into remission.

08-28-2016, 11:47 AM   #9
Julia S
 
Join Date: Aug 2016
Location: São Paulo, Brazil

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I'd love to know that from people in here in general... what was your longest time in remission and what drugs were you on then? Just to give us newly diagnosed a little bit of hope that a long remission period is possible...
08-28-2016, 06:35 PM   #10
ronroush7
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What was your longest period in remission? Were you in remission before the biologics?
I think it was before biologics that I went into remission. Everyone is different.
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