I had to spend the day in the ER today.... Now I'm getting nervous! (Remicade question also)

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Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 4/13/2009 2:50 PM (GMT -7)   
First off, thank you so much for all of the replies from th previous thread.  It means more than you'll ever know.  I became dehydrated again, so I spent the day in the ER with lots of IV fluids.  The are thinking I am so sick because 1. I had an infection.  2.  A bad Crohn's flare.
 
The diarrhea is getting a little better right now, and I should be able to get my Remicade Thursday or Friday.
 
A couple of months ago, they thought I was having a rection to Remicade (we now think it was a panic attack.)  I had them stop the infusion and left.  I only received a little.
 
I went back a few weeks later and received 5mg/kg instead of my usual 10mg/kg because I was doing "well."  Well, nine weeks later, and I feel as sick as when I was diagnosed.  Do you think missing the one dose of Remi and then only receiving 1/2 of my usual dose, then waiting 9 weeks could cause a flare, or am I losing my mind?
 
Also, even thought my fluid and electrolytes are up, I'm not hungry AT ALL.....  I keep drinking Gatorade.
 
Have you ever been so sick from Crohn's that you feel too week to walk? cry
Diagnosed with Crohn's March 2006, Fibromyalgia Nov. 2008, Anxiety Disorder since childhood
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg three times a day, 1mg at bedtime (for anxiety attacks)
 
 
 
 
 


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/13/2009 2:58 PM (GMT -7)   
oh man...i am so sorry...that is sucky...i am having appetite issues my self the past few days...i have been living on gingerale for the nausea...but i need more...

i am a newbie and don't officially have a diagnosis of anything yet, so i can't offer much help...i just know it stinks to spend the day in ER...maybe the anxiety of the ER and stuff has affected your appetite...

wish i could help...feel better

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 3:00 PM (GMT -7)   
You sound a little better... I'm glad you went in for more fluids... that can help SOOO much sometimes.

First off, I definitely am of the opinion that the reduced dose of Remicade you received is very likely part of the reason you're in a flare. If I missed, or as you did got a reduced dose, I could tell within a matter of weeks. So, I would hope that many of your troubles will be relieved when you get a full dose and give it a little time to start working.

Second, a lack of appetite is also normal for me when I'm flaring badly. I don't know if it has a physical cause, or if in my case I just get so stressed out at the thought of food that it keeps me from eating... but yes - keep drinking that gatorade until you get a bit of an appetite back. I go the herbal route when I need help getting an appetite, but those methods cannot be discussed on this forum. As a replacement suggestion, if you find that your appetite really isn't returning even after you feel better, you might look into Marinol. It reduced nausea and sparks your appetite. But give yourself some time to get thru the worst of this flare and recover before you start worrying too much.

And lastly, a bad flare can effect the absorption of every nutrient your body needs to run smoothly, and that includes your ability to walk and function most definitely. Your bloodwork might be fine, but there might be a bit of a lag before your body is fine too. Joint pain in my knees and ankles and feet is usually where I start to hurt the most. And, as you mentioned, general weakness can happen when you're not "eating".

It sounds like a wicked-bad flare, but it also sounds like you may be through the worst of it. All of your symptoms sound "normal" for a bad flare, so you most definitely are NOT losing your mind! Get your Remicade, continue to keep tabs on your fluids, and you'll pull through this!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!

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