Desperate need of help with Crohns

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New Member

Date Joined May 2010
Total Posts : 1
   Posted 5/11/2010 4:44 PM (GMT -7)   

I've been with crohn 4 years now, I've never been in remission, so don't know what it feels like and this is my 4th doctor I'm going and NOTHING seems to work, I've tried:
I'm trying Remicade but it shows no improvement, I'm getting VERY desperate and trying unorthodox methods
Can anyone PLEASE, Please give me some tips I'm really getting desperate having to withstand all of this pain all of these years with no cure not even a tiny bit.

Post Edited By Moderator (ivy6) : 5/11/2010 7:45:59 PM (GMT-6)

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 5/11/2010 7:56 PM (GMT -7)   
Hello Mito...I am sorry to hear that you are suffering so...(((((((((((((((((((hugs)))))))))))))))))))
Just a few questions...What is making you so uncomfortable? Diarrhea?...Also how long have you been on your medications...are you still on Imuran/Prednisone/Pentansa or are you just doing the Remicade all alone? One of our Forum Moderators, in her signature line has links to threads discussing different medications for Crohn's Disease...

How is your diet? Are you on a low residue diet? I know that I have to be most of the time, because, unless I am feeling real good, I cannot tolerate different...

So feel free to come back, ask questions...rant, cry, whatever you need...but maybe introduce yourself too, because it seems that this is your first posting...

I am sorry that you need this website, but there are a lot of caring people here...take care...
"The earth laughs in flowers"

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 5/11/2010 7:59 PM (GMT -7)   
Has your GI suggested anything beyond Remicade, like Humira or Cimzia? Some people respond well to those even if they don't respond to Remicade.

I'm sorry you're struggling right now =(

New Member

Date Joined May 2010
Total Posts : 2
   Posted 5/13/2010 11:56 PM (GMT -7)   
It sucks. I think everyone has different ways of coping. So much is out of our control. It helps me to focus on what is in my control. Some find relief with meds, diets, prayer, exercice, etc. I like having the latest info, coming to this site, setting small goals, showers, music, writting and sometimes the only thing you can do is to lie in bed and remind yourself that it won't be as bad later. I learned a whole lot about patience. I even had the word tattooed on my foot to look at when I'm doubled over in pain  :-) Try to find the things that are soothing to you, that can distract you, cheer you up. Like it or not we're stuck with this for life and it's important to find a lot of different ways of getting through the rough patches. And if all else fails, you have a place to come where you know you'll be understood and accepted.

27, Crohn's diagnosed in 2006, 2 surgeries prianal abcess, 2 resections, chronic sacro-illitis, tried lots of meds but no success so far.

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