Remicade and Dilation

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itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 5/21/2009 8:53 PM (GMT -7)   
My 14 yr olddaughter has a pyloric stricture and her flare up hasn't died down with other meds so we now go to Remicade. At first I wasn't happy to go to this without trying 6MP, but I happened to listen to a webcast with the University of Chicago's head GI talk about the best way to treat Crohn's right now is to be aggressive instead of starting with the standard drugs. Her GI has suggested we dilate her to prevent a surgery, so we started this process last week (6mm). Today we try and she has food in her stomach so a no go. The good news is that we are now just waiting for insurance to clear us for Remicade. The GI did mention that he wanted to dilate once before Remicade treatment because Remicade has a tendency to cause more scar tissue to form. We do another dilation next Wed. and hopefully we start her infusion at the end of the week. Her other ped. GI wants to go to surgery now instead of trying the dilation. Is it right to try dilation first? I would think the last thing you want is to have surgery.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/21/2009 9:11 PM (GMT -7)   
If I were in that situation, I would try the doc's recommendations to try and spare removing part of my guts. What they take out can never be put back. I hope that the dilation is successful and that the Remicade does the trick. I was took Remicade for 2.5 years and it put my guts into remission.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 5/22/2009 10:24 AM (GMT -7)   
Hi i agree with Ides i would try what the doc is suggesting  first as your daughter is at a very young age to start having parts of her bowel removed. hopefully the remicade will work and she won't need the surgery. i only had 1 infusions of remi  (as i had a reaction on the 2nd one )but i felt the benefit of it the very next day i so wish i was still on it wishing your daughter well Bev x 

Diagnoised with crohn's at 13 now 42
resection, right hemi 1993
In remmision from 93 till last sept with no meds or docs
2 resections small bowel jan 09 and given temp stoma
 No maintance drugs,only on B12 shots,iron syrup,loperimide


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 5/22/2009 12:50 PM (GMT -7)   
Thanks Ides and crohnielass. I have seen some say they still take other drugs with Remicade. Why is that? Her GI has said she should be able to go off the other two drugs she is on once she starts the treatment.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 5/22/2009 1:56 PM (GMT -7)   
Stick to your plan. Remicade is a good drug for most. You just need to make sure that you stick to the schedule. If you miss appointments your body can begin to build antibodies and your daughter will have to stop it. The schedule isn't to bad and I did not have any side effects. I di however have to come off of it for another non related procedure and it was two weks and two days that I went for my next infusion and my body was very unhappy. Switched to Humira for 18 months and now I'm on Cimzia. I truly believe that the Remicade would have done the trick. Good luck to you and your daughter.
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.
Multitude of Meds. Have tried most Crohn's meds - now on Humira. Gall bladder removal and Intestinal Lap. sched. for June 08.

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