Anyone on remicade with ileitis or stricturing disease

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/17/2007 9:43 PM (GMT -7)   
I called the company that makes remicade to see if they had any info on how remicade could be used for my type of crohns which is predominently in the ti (ileitis) aka stricturing disease.  They said they did not but if I had a nurse or doc call they had some info that  they could give on this topic as it is considered an off-label use.
Just wondering if anyone on this list is on remicade for crohns of ti and is having success with it.
Thanks
Chris
 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/17/2007 11:03 PM (GMT -7)   
Hi Chris! Not everyone that has Crohn's in the TI has strictures. That is where my CD is located, but I don't have a stricture [yet! knock on wood!]. I have been on Remicade for over 2.5 years and my guts went into remission. From what info I have gathered, a stricture caused by scar tisse will not reduce from Remicade. A stricture that is due solely to inflammation can actually reduce with Remicade. A problem that has surfaced in some cases is that Remicade causes such rapid healing of the intestinal mucosa, that a stricture from inflammation can quickly evolve into scar tissue. I do know that there are several people that post here that had strictures that reduced when they started Remicade.

Hope that helps and anyone feel free to correct what I wrote. It's late at night and my brain is on overload.
Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/18/2007 3:17 AM (GMT -7)   
I didn't know that. Thanks for your input. Prior to remicade did you try anything else to get the inflammation down? Is the TI the only site of your crohn's? Do you happen to know if your CRP was elevated when you were diagnosed. Sorry for all the questions as I am trying to figure out what to do. So much info I am on overload!! I find the docs don't give you much info or time to ask questions. I am the type of person that has to understand it all maybe it is my control freak nature coming out--I don't know. Having a daughter who had leukemia we had to make so many decisions that were out of our league so to speak and the only way we could make them is thorugh research. Thank goodness we were able to make the right ones so far. I guess I am using that experiece and applying it to mine!!
Thanks so much
Chris

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/18/2007 4:45 AM (GMT -7)   
Hi Chris I agree with you that it is good to see how others are doing about there CD not only that but it gives great support.I was reading about cellulose in the diet and how it can cause erosion or inflamation so one never knows what good info they will come across I am glad I don't eat bran cereal anymore. Getting off the subject here a little I guess.Hopefully you will get some helpful suggestions .Best Wishes lol gail
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