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Fri, November 18, 2016 1:11 AM

I was diagnosed with Crohns disease in 2004 been off and on different medications prednisone for 10 years Ive been on Humira for a year and a half seems to have it in remission but everything else is falling apart I just feel like giving up on life ! Eyes / heart / leds are in unbelievable pain ! Feel faint all the time ! Memory is gone !

FPO kevin v 49
Joined Nov 18, 2016

Tue, March 14, 2017 6:57 PM

Reply posted for kevin v 49.

There are several different new medications as well as others you may not have tried yet.  Everyone has a different reaction both to how well they work and what side effects each med has.  Try additional ones with the help of your doctor.  There's an awful lot going on in this area of medicine now, so hang in there!! 

FPO gcrawford
Joined Mar 14, 2017

Tue, January 31, 2017 5:38 PM

 Reply posted for kevin v 49.

Do you have access to Facebook?  I am the facilitator of the Oklahoma City, OK CCFA Support group.
If you would like to join our facebook group, you may be able to find some more answers.
If you'd like, I am inviting you to join our facebook group, and post the same question. 
https://www.facebook.com/groups/OKCCCFASupport/
We have quite a few links located in our resource directory located at http://ostomy211.com/business-directory/wpbdp_category/ibd/
We are in the process of adding more links to support groups related to IBD, but the ones we have so far can be found at 
http://ostomy211.com/business-directory/wpbdp_category/ibd-social-and-support-groups/
 

FPO ostomy211
Joined Jan 16, 2015

Sat, January 07, 2017 2:01 AM

 Reply posted for kevin v 49.

I read your post and am really sorry you're having such a struggle.  I was diagnosed with UC at age 15, but it went into remission in my early 20s.  When I hit 30 it came back with a vengeance.  At that time, Prednisone was the primary medication used.  I hated it!!  Finally, I opted to have Koch Pouch surgery, which was the best decision I ever made.  I'm free from all the pain, diarrhea, etc.  And I can eat whatever I want.  You may want to look into surgery rather than deal with all the horrific side effects to your medications.  Here's another thing I discovered.  I attribute the remission in my 20s to my use of marijuana at the time.  I stopped using it when I went back to graduate school.  Then the UC came back with a vengeance.  Thus...surgery.  With the Koch Pouch, you can get periodic inflammations--usually treated with antibiotics.  I was having these more and more.  I decided to try marijuana again since it's legal in my state, and I haven't had a flare up in 10 years.  Doctors will not recommend it as there's little research due to the legal issues.  All I can say is it sure has worked for me.  It has also worked for four friends who also suffer with IBD, UC, and Chron's.  From what I understand, it quiets the immune system down so it doesn't attack your own body.  You may want to consider it.  I'm now 65 and definitely not a stoner.  I only use it at bedtime.  Good luck, and hang in there!

FPO indialogue
Joined Nov 29, 2014

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