Help! Medical team is lost!

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petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 7/19/2009 7:51 AM (GMT -7)   
I haven't been feeling great for a couple of months but things really escalated a few of weeks ago. I take Remicade every 8 weeks and my Crohn's has been under control. My blood work 2 months ago was normal. A few weeks ago I starting vomiting, enough to lose a pound or two here and there. 2 weeks ago it started getting worse, I threw up something every-time I ate or drank and lost 12 pounds. I took zofran and then couldn't even hold that down anymore. My bowel movements have always been pretty normal. Early on the morning (Monday) I stopped being able to hold down the zofran I spent 2 hours on the bowl with non stop diarrhea. Went to the ER Monday morning and was admitted. CT scan was normal but showed my bowel was full of crap. How with all that came out that morning I don't know. They gave me ducolax...nothing. The vomiting stopped but still no bowel movement. On Wednesday as I was getting ready to be released I had an episode of angioedema ( tongue and throat swelled, couldn't breathe) and got sent to ICU for 2 days. It happened 3 more times and the tests the allergists did show no reason why. Was released Friday but I stilled hadn't had a bowel movement. Friday night at home had D. Then nothing until this Tuesday. Since Tuesday I have had nothing but explosive D every day. Oh and I finally stopped vomiting. I had my new remicade infusion on Tuesday and had been on pred cause of the who edema thing. I have 4 GIs and 3 allergists trying to figure out what is going on. My inflammatory markers aren't high plus I've been on pred and remicade which should be working if this was from the Crohn's. The D is so bad that my anus is raw. I don't know what to do. I'm leaving for my 40th bday vacation on Saturday and can not travel like this. Help!
Jodi

Remicade and 6MP


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/19/2009 4:56 PM (GMT -7)   
There is a condition called hereditary angioedema that fits your symptoms pretty well. See: Wikipedia

petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 7/19/2009 5:59 PM (GMT -7)   
They tested me for it and I was negative.
Jodi

Remicade and 6MP


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 7/20/2009 4:21 PM (GMT -7)   
So I need to take a c-diff test since I was in ICU and on pred and get a colonoscopy when I come back from my trip.
Jodi

Remicade and 6MP


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/20/2009 4:33 PM (GMT -7)   
Jodi, I think we are just lost on what to do to help you. You got me, I do not know if you are getting blockage or if you are switch to c as a symptom, but if you get to feeling like you are in any danger please go to the er.   for a raw booty in pinch neosporin with ladocaine (or about anything with ladocaine) can help with the raw feeling.  Please take care.
Concerned about you,
Navy


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/20/2009 5:36:13 PM (GMT-6)


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 7/21/2009 2:45 AM (GMT -7)   
The doc doesn't really think I have c-diff since the d started although not nearly as frequent prior to the hospital. CT scan in the hospital was clean and to quote the radiologist one of the best he's ever seen. My platlet count is high but it is always high. There are even doubts as to whether or not I really even have Crohns since I was diagnosed via capsule study and not with a tissue sample. The doctor couldn't find any active crohn's with the capsule I had done last year.

In the mean time I was told to use a barrier cream for the fissure and I have a script for ? questran? to be filled after I do all the stool tests for c-diff and parasites. D and C are a completely new sympton for me. I was always a vomiter with maybe 1 or 2 d movements a week and normal stool the rest of the time.

According to my docs I fall into "well it almost seems like you have... but you don't really meet the criteria" category.
Jodi

Remicade and 6MP


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/21/2009 3:32 AM (GMT -7)   
That has got to be so aggravating.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/23/2009 9:41 PM (GMT -7)   
One more possibility - eosinophilic disorder. See: APFED.org

It is related to allergic responses and so fits in with the apparent allergic swelling of the throat and tongue. It should respond to prednisone or other corticosteroids and needs a biopsy for diagnosis.
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