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It isn't C-Diff...now I am scared

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Crohn's Disease
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Posted 7/27/2011 2:06 PM (GMT 0)
So anyone that has been following my posts...I have been sick on and off (mostly on) for about a month now.  Monday I went to give more blood and a stool sample.  The dr was thinking that I had C-diff and wanted to confirm it.  Just got the results back.  CBC was normal and the C-Diff can back negative.

So now what do I do.  Everything is showing I am normal, yet I am still feeling sick.  I had horrible pain yesterday and went to the bathroom about 30 times.  I am so sore down there.  I only started getting better once I got home and was able to take my Lamodil.  Even this morning I had some bad urgency to go to the bathroom.   It doesn't feel like a normal flare so this is starting to really scare me as to what it can be.

My last colonoscopy was in February and my GI said that almost all my Crohn's was inactive and it was the best I have looked in many years.  Does anyone think that can be something serious other than a flare??

I am so scared and depressed.  I can't seem to live my life anymore.  I am going on a cruise in 3 weeks and I can't see myself enjoying it.  I could really use some TLC and advice.

Posted 7/27/2011 2:24 PM (GMT 0)
I still think you are in a flare. Did they give you a course of steroids yet? If not, I would request it so you can start feeling better for your cruise.

A change in diet may help too. When I have a stubborn flare, I revert back to the SCD although this only helps some people but may be worth a try.

Have a long talk with your GI and explain your thoughts and fears. You GI may also want to change your oral Crohn's medication too. I usually have a change in medication every year or two because my body stops responding to it after a time.

Try not to get too down. I know it is hard but stress always makes things worse. I used to be the worst at worrying and stressing but my GI prescribed Xanax and in times of stress or anxiety, I will take half of a pill and this has really helped my Crohn's. I don't flare as much and the flares are not as severe.

Take care of yourself!
Posted 7/27/2011 2:29 PM (GMT 0)
Pmedic...

The only med I am on right now is Humira. I have had bad reactions to all of the other meds I have taken...including Prednisone. It has been a very rough time trying to find a med for me. I am close to going on clinical trials.

Also, it doesn't feel like any flare I have had before. I am scared that I might be partially blocked or have a stricture or something bad like this.
Posted 7/27/2011 3:34 PM (GMT 0)
Hugs Jay!!! I think you should ask your doc for a few weeks of Entocort. I finally had to do that. And even though my blood tests weren't showing anything, the Entocort did help to quiet things down a little. Blood tests are notorious for showing up normal, all the while you are feeling miserable. Hope you get feeling better soon!
Posted 7/27/2011 3:44 PM (GMT 0)
Welcome back Gail...and I hope you are doing a lot better.  So many people have missed you on here.  I spoke with my GI this morning and he wants to do a Sigmoidoscopy and a CT scan to see what is going on.  I think he is thinking like me and that my main areas aren't in a flare and that something else is going on..possibly somewhere new.

Posted 7/27/2011 3:57 PM (GMT 0)
Could be a new area of inflammation, where the scope couldn't see. My blood work never shows anything, even when I am in the hospital with complete blockages or severe inflammation, so I don't put much stock in that. I would try Entocort if you haven't had a reaction to that before. If you start soon you should see some results before your trip.

Or you might have picked up a virus some place. In which case you would just have to let it run its course.
Posted 7/27/2011 6:18 PM (GMT 0)
I feel your pain as it relates to having reactions to meds! I developed severe anxiety issues after I developed SVT as an adverse reaction after being injected with different medications for crohn's. After my Crohn's got under control, I find I can tolerate a wider variety of meds now, although the anxiety is still there every time I try something new.

When I was on either Humira or Cimzia, I had to have a secondary oral medication also. Just the biologic wasn't holding me. It would work good by itself in the beginning then later I would start to have issues. My GI started combining my Cimzia with a 5ASA and it seemed to do the trick.

Hopefully these tests your GI has ordered will tell the tale and get you on the road to feeling better.

I wish you the best and please let us know how you are doing!
Posted 7/27/2011 6:31 PM (GMT 0)
The only meds that worked on me was Remicade but like most, I developed the antibodies.  I think my GI might think I am reacting to the Humira but doesn't want to say it just yet.  He asked me today when my next injection is and when I told him he paused for a long time like he was thinking if I should take it or not.  The fact that he is stumped right now, and he is really good at what he does, worries me.  I do have faith in him and I know he will find out what is going on.  I think it is something going on in my colon which means down the road in the near future I see a colonoscopy happening.

It also hurts me as I only have 5 sick days left this year and I have to use one for my sigmoidoscopy.  Everyone at work is understandable but I need the paycheck and can't afford to miss days with no pay.  I know a lot of people have gone down this road.  I never thought I would have to travel it..but looks like I am making the trip. 

I think what is really getting to me is that my father in law had an iliostomy and recently died because of it.  He went into the hospital with kidney failure because of dehydration and in turn caused his heart to fail.  He was in and out of the ICU for months and eventually it took its toll on him and he passed.  With all the D I am having I can see myself eventually dehydrating.  I am overweight and have had high cholesterol so I don't know how great my heart is.  So I just keep seeing worse case scenerio for me.  I am not one to always think negatively with this disease but lately that is all I have been thinking and I can't seem to stop.  It is good to be able to come on here to vent but the feeling of realease only last a little bit.

I do want to thank everyone for their concerns and point of views and ideas.

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