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How do strictures form? and other questions

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Crohn's Disease
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nikki0294
Regular Member
Joined : Sep 2007
Posts : 219
Posted 9/20/2007 2:46 PM (GMT -8)
If there is severe inflammation in the ti is the thinking that you want the inflammation to heal quickly to prevent scarring and permanent narrowing or do you want it to heal more slowly like with pentasa and entocort to prevent strictures?? 

I am so confused I went for 2 opinions on my newly dx crohns and one doc said mild to moderate and the other said severe after reviewing slides and cat scans.  Neither wants to escalate treatment and it has been 3 1/2 weeks on the current treatment (pentasa, entocort, rifaximin).  Why don't they want to do prednisone just to relieve the  inflammation or remicade?  I am so confused...I don't want to get strictures or permanent narrowing either so I am anxious to get going here.  6mp I don't think is going to heal this just keep the counts low so what gives?  Both docs say they are aggressive and don't like prednisone but neither are pushing the remicade??  I am so confused..maybe I am missing something about this disease. 

Thanks

Chris

 

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gachrons
Veteran Member
Joined : Mar 2007
Posts : 4527
Posted 9/20/2007 4:51 PM (GMT -8)
Hi Chris I know sometimes it is hard to know what to do .Hopefully they do I just put my med thing in my GI's hands and hope for the best I cain't tell you much about the TI area or how fast it should heal what did your GI say on that?Perhaps they feel that it needs more time for your current meds to kick in. Is your CD located in just the TI ? Hang in there and I hope things get better for you.lol gail
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nikki0294
Regular Member
Joined : Sep 2007
Posts : 219
Posted 9/20/2007 6:04 PM (GMT -8)
Thanks Gail. It has been 3 weeks almost 4 next Tuesday. I went for 2 other opinions and the GIs still need to get back with me on everything. I wait and the phone doesn't ring. I am losing confidence in them and not feeling I can trust them with my care. I guess they are all very busy.!!! UGH!!

Thx
Chris
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belleenstein
Veteran Member
Joined : Feb 2007
Posts : 1010
Posted 9/20/2007 7:13 PM (GMT -8)
Hi Nikki:

6-mp does not just treat symptoms. It treats disease activity by lowering the body's immune response. The current thinking is that crohn's disease is an auto-immune disease. That means that the body's immune system begins to view the body's own tissues -- in this case intestinal tissue -- as a foreign invader. It mounts an immune response in order to "fight" this "invader" and that's how the intestinal tissue is damaged. Eventually, if this immune response is not controlled, as the the body tries to heal the ulcerations and inflammation scar tissue forms. Each flare produces more inflammation and ulceration and thus more scar tissue. Immuno suppressents like 6-MP and Imuran shut down the body's immune response so it stops attacking the intestine.

It sounds like your docs might be concerned that you have a primarily stricturing form of crohn's. There is some concern (althout the most recent studies seem to refute the hypothesis) that Remicade works so well at healing that, in stricturing crohn's, it can excellerate the formation of scar tissue. If you already have a narrowing from stricture, the thinking is that it might actually exacerbate symptoms (make the stricture worse). If however, your symptoms are primarily the result of inflammation or you are suffering from fistulas, then Remicade is a treatment of choice because it has been shown to be highly effective in both reducing inflammation and healing fistulas.

There are three major forms of crohn's disease -- in some people the disease is primarily the stricturing type, in others the most pressing issue is inflammation, and still others have primarily problems with fistulas. To some extent any crohn's patient can experience all of these manifestations (I have) but I have primarily stricturing crohn's so my most pressing concern is scar tissue formation. Since my last surgery, 2005, I am being maintained on 3000 mgs of pentasa and 100 mg of imuran and feel I'm closest to clinical remission as I have ever been in the 30 years I've been dealing with this disease.

I know it is hard to be patient, but give your medications time to work. Typically it will take from six weeks to six months for 6-MP to become fully effective. While there is a body of thinking that suggests a top down approach to treating crohn's -- using the most powerful drugs at the beginning in order to knock down the disease before it has had time to do lots of damage -- this is still a very controversial therapeutic approach, especially in view of the fact that the immuno-modulators like remicade become less effective with continued use and have a high potential for very nasty complications.
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nawlinscate
Veteran Member
Joined : Jan 2007
Posts : 656
Posted 9/21/2007 5:43 AM (GMT -8)
Hi, Chris. Will it ease your mind a little to know that I've been in your situation and have been very lucky with 6MP. I was on Pentasa for years, and it clearly wasn't working--as demonstrated by a footlong TI stricture, which everybody hoped was inflammation and not scar tissue. My GI doc took me off Pentasa and put me on a pretty minimal dose of 6MP. Although my symptoms never improved, my latest SBFT series showed that the stricture is gone (or at least was gone at that time). I've had no noticeable side effects from the 6MP, and my labwork (every three months) remains encouraging. 6MP doesn't work for everyone, but it's the only thing that's worked for me. As Belleenstein says, be patient--and, believe me, you want to avoid prednisone if you can, since that drug's effects can be more disturbing than the crohn's! Good luck with everything. Each of us responds differently to meds, and it usually takes you and your doctors a while to figure out what works best for you.
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