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is it crohns or not!!!

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Crohn's Disease
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Posted 9/19/2007 12:24 AM (GMT 0)
 

Hi all, I"m a newbie here but I am way confused and figured maybe somone could shed some light.  8 years ago (Iwas 17) I was diagnosed with Crohns and saw a gi specialist who started me on asacol and stated that I could try taking it only when I had a flare up so I did that and it has  worked well for me. No one has questioned it and I have been able to keep it under control (well 4 flare ups a year) for the past 8 years when it was uncontrollable. Now I am an adult and have moved to a different city and have a new gi specialist I have just started seeing. He was confused as to why only taking asacol when I had a flare up worked and that i had never been hospitalized for the crohns so he ordered a colonoscopy... which I had today. we were talking afterwards and said he is unsure as to what is going on since my intestines look very healthy and is sill boggled by the asacol on a prn basis. He is having biopsys done hoping to shed yet more light but he thinks it is ibs.

the symtpoms I get with my flare ups are extreme nausea, no appetite, blood in stool that is typically a little bloody and it is always diahreah, with an elevated white blood count, extreme cramping and back aches.I have never been constipated in my life til just recently which is what prompted me to see a gi specialist since this was a new symtpom. THere are foods I cannot eat,and foods I can eat if I take my asacol prior to...

anyone ever heard of this???

Steph
Posted 9/19/2007 12:36 AM (GMT 0)
Hi Steph and welcome to Healingwell!

 

My first question is this.  How were you diagnosed in the first place?  Was it by colonoscopy and biopsy?  A biopsy that comes back positive for CD is difficult to contest.  Does your new GI have the records from your old GI?  If not, you need to make sure he gets them.  Diagnosing CD is often putting a lot of puzzle pieces together.  I, personally, would not accept IBS as a diagnosis if there was blood in my stool.

 

Asacol is meant to be a maintenance drug, and to be taken continually.  Most of us increase the doseage when we are flaring, and decrease it when we are in remission, but we keep taking it no matter what.

 

It's possible that your case has been mild enough to be brought under control by the Asacol, then took some time to appear again.

 

I have never been hospitalized for Crohn's either.  Not everybody is.

 

Get ahold of those old records.  Get copies for your new doc and for yourself.  Good luck to you.

Posted 9/19/2007 12:48 AM (GMT 0)
I had a colonoscopy the first time I was diagnosed. I had bowels that were purley blood and they were affraid it was cancer so off to a colonoscopy I went. I will see what they say the results are from the biopsy and if they say they dont feel it is crohns I will deffinately have them send for my previous colonoscopy report (or I may just request it for myself and go over with my dr. ) I was glad that he did not change my medication or anything at this time.He did increase it alittle bit but not much and that helped to get my flare up under control.

Steph

Posted 9/19/2007 12:51 AM (GMT 0)
Be aware that CD will not always show up in the biopsies.  I have CD, and it has only showed up one out of three colonoscopies. 

 

I'm glad that you are at least feeling better. :)

Posted 9/19/2007 8:40 PM (GMT 0)
Thanks so much for the info guys. I am going to get a hold of my last doctor and request the records from when he did my colonoscopy the first time and see what is going on. No one has ever checked my small intestine that I am aware..i think I would know if they did ... right? I guess we will see.


Steph
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