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Crohn's Disease
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Posted 5/14/2014 8:31 PM (GMT 0)
Hi guys, I've almost hit the 3 years of being diagnosed with CD (though I could have had it my whole life and been lucky for 32 years) and this is almost the worst I've felt. I'm on Remicade and my last infusion was 4/15 but lately it feels like it is wearing off way too soon. I see my GI tomorrow though so I'm trying to hold out.

Constant pain across my waistline and around to my back for the past 2 days but it seems like its the worst on my sides, up to my sternum sometimes and radiating elsewhere too. Sore Throat (I may be experiencing reflux). No fever, no nausea. Stools are loose and more frequent. I'm at 4 today (which is chump change for a lot of people I'm sure, I just usually don't have issues). Prior to this I was having a lot of pain right below the sternum, now its migrating south.

I may have eaten some no-no foods (stuffed peppers / spaghetti and meatballs) that could be doing this.

It's definetly got my anxiety up which doesn't help, and I used to be a chronic ER runner. I'm trying to manage because I don't think they'd honestly do very much for me.

Just figured I'd vent a bit and throw it out there, I usually run into some trouble a couple weeks before my next infusion but I still have 25 days to go and the pain is a bit worse this go around.
Posted 5/15/2014 10:54 PM (GMT 0)
Sorry to hear you're not feeling well. We've all been there. You could have aggravated your guts with food, or... It really old be that the remicade isn't lasting as long as it used to. Did you talk to your GI today? What does (s)he think? Try not to stress ( ha! ) and hopefully you have some good advice from your doc. Let us know.
Posted 5/15/2014 11:23 PM (GMT 0)
Well I get to have another colonoscopy Monday. There is a good possibility the Remicade isn't lasting as long so he says the best way to find out is to go up there and look.

I guess knowing that is making me feel a bit better.
Posted 5/16/2014 3:04 PM (GMT 0)
Hopefully you can get some good answers and then your doc will know what course to take. Just for the record, while it never hurts to take a look inside and see what's going on, you don't HAVE to get a colonoscopy just to know that the remicade is petering out. It's a very common thing to have happen, but I'm sure your doctor is doing it for his own peace of mind, and yours, of course. Hopefully he will be able to order a more frequent dosing schedule for you and you will be feeling better soon!
Posted 5/16/2014 8:17 PM (GMT 0)
Yeah, he said we could do CT's, we could do Pill Cams, etc. but the best way to know is to do a scope. I'm fine with it, and I'm curious to see how things are after 3 years (First scope was June 2011). The prep on the other hand... meh :)
Posted 5/20/2014 10:46 AM (GMT 0)

I had a similar situation with Remicade, it worked great for about two years then all of a sudden I found myself having constant battles of flares, eventually it resulted in a major flare.  I have been on Humera now for about two years and I am starting to have similar issues, it feels like I am in a constant flare, not to mention the added issues I am having with constant pain in my spine and bones in general.  I am almost 35 years old, I have had CD since 2004 and had 16 colonoscopys (I think my old doctor enjoyed doing them), I have gotten so used to them it is not even funny. 

Hopefully you can find some solutions with test results allowing you to find a happy balance.  Good luck

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