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I guess it's remicade

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Crohn's Disease
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Posted 1/16/2011 12:08 AM (GMT 0)
Well, went to my specialist yesterday to find out what to do now after I reacted to azathioprine and 6mp - thought he might just say "lets wait and see" because I'm feeling really good right now. But he reviewed my colonoscopy and small bowel follow through and said that he really wants me on remicade. He said he couldn't get his scope into the ilieum when he went in and that it was narrow and swollen. He said that if I needed surgery down the road (and seemed to think I would if it kept going this way) that it would be a really major surgery because they would have to take a lot out to get to a healthy part to attach it to. Crappy. The good news is that he gave it to me straight so I'm done minimizing and questioning medications and off to start remi in a couple of weeks. Fingers double crossed that I don't react because I need something to work!
Posted 1/16/2011 3:02 AM (GMT 0)
Sorry the news from your doc isn't good. But on the flip side, it's better to be prepared as best as you can. It is just so strange that this disease can wreck so much havoc on the insides with no symptoms until you end up in the ER; and for some other people, have so few tests be positive but have so much pain and digestive issues. This is one hard disease to really know how to manage, or even gauge how well you're doing.

I'll keep my fingers crossed that Remicade does the job for you. I've heard though that Remicade can make strictures worse - because it causes too rapid healing or something like that. Of course I am not 100% certain about this theory. Please check with your doc to make sure or perhaps someone else on this forum can elaborate (or tell me I'm completely wrong).

I am glad you're feeling good though. It makes it easier to deal with it for sure.

PV
Posted 1/16/2011 5:27 AM (GMT 0)
Remicade was an awesome drug for me. I hope it works as well for you as it did for me!
Posted 1/16/2011 5:32 AM (GMT 0)
It's good your doctor was straight forward with you. It sucks to hear it, but inflammation like that is usually a ticking time bomb that can flare up at anytime. I really hope Remicade works for you!
Posted 1/16/2011 6:40 AM (GMT 0)
I personally appreciate it when my doctor gives it to me straight so that just like you, it pushes me to make strong decisons. PV, you are right that sometimes remicade can make strictures worse but usually it really helps more than it hurts. If her stricture is inflammation based and not scar tissue based, she could really really benefit from the remicade. Good luck with it and feel free to ask any questions about the infusions. There are a ton of members that have been on it a long time and I have been on it for a combined 7 years now. It is good that you are taking care of yourself and taking the treatment head on.
Posted 1/16/2011 7:04 AM (GMT 0)
thanks everyone - I really am hoping that it all goes well - I feel like I am running out of options so I am hoping that this all goes well and I can stay on it for a long time!
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