Clinical Remission?

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RedAurora
Regular Member


Date Joined Feb 2007
Total Posts : 88
   Posted 9/29/2007 1:17 PM (GMT -7)   
Hi everyone, it has been a little while since I was last on here. I'm the girl whose doctor told me that having Crohns was like being retarded. Anyways, I had my first flare in Feb and was Dx with Crohns. Now 8 months on I had a colonscopy, endoscope, Barium swallow follow through and whole bunch of other stuff. My new GI said there is no sign of inflammation and no scar tissue which leads him to believe that it was never Crohns to start with. THat I came across some super bacteria. All the scans and blood work were normal. He said that if it were Crohns back in Feb that it is almost impossible for me to be in Clinical remission today. Now I know I should be thrilled by this news but somehow I'm not. Did I go through all that sh** with Prednisone and other meds for something that could have been cleared up with antibiotics? I'm frustrated now because if it isn't crohns, whats wrong with me. I still have horrible abdominal pain but nobody can tell me why. Which doc do I believe the GI specialist who thinks its not Crohns, or the GI specialst that treated me and says that it is crohns. I'm confused.

25 yr old female. Diagnosed with Crohn's on Feb 14th 2007 confined to the terminal ilieum, Asacol, Levsin, Nexium 40mg, Percocet, darvocet, phenergren.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/29/2007 4:40 PM (GMT -7)   
I'd believe the specialist who says it is Crohn's. Clinical remission is nothing more than the Crohn's lesions, inflammation, whatever, being hidden from easy access and viewing. It often has nothing to do w/the symptoms you experience. Too many gastros are satisfied if they can't find signs of Crohn's despite the patient still suffering symptoms.
 
Biopsies in the wrong area, a pathologist not experienced w/recognizing Crohn's signs, etc., etc. Some jerk gastros even consider mild inflammation when they see it clinical remission. The SBFT is only as good as the radiologist reading the films and if he's not experienced in dealing w/and recognizing Crohn's signs .....
 
H*ll, I had one veteran radiologist say in his report that the small intestine was "normal". Yeah, right. Normal. After a resection in which the diseased area was just looped over and bypassed years ago. Believe me, even "I" can see that resected area on SBFT films! One SBFT radiologist thought that area was a possible Meckel's diverticulum. (At least he recognized the small intestine wasn't "normal"!!!)
 
I even ran into one SBFT radiologist who considered that SBFT normal because there was no change from the previous SBFT that DID indicate some Crohn's involvement!!
 
Crohn's tends to move UP the GI tract so even the colonoscopy that didn't find any inflammation at the TI could have easily missed inflammation that had skipped UP the TI and out of scope range.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 9/29/2007 5:44:12 PM (GMT-6)


jellybean1887
Veteran Member


Date Joined May 2005
Total Posts : 1362
   Posted 9/29/2007 7:29 PM (GMT -7)   
I would tend to believe the doctor that told you you had Crohns as well. In August I had a colonoscopy because I was having lots of rectal bleeding, and the doctor performing the scope said she could find no signs of inflammation anywhere despite the blood, so I was sent home. In September I had gotten worse and had to end up having exploratory abdominal surgery. The surgery showed an extremely inflamed colon, and a subsequent endoscopy confirmed that there was severe inflammation in my gut. I think it would be better to go with that doctor, especially if s/he would be willing to treat you for your symptoms rather than brushing you aside. Anyway, hope you get the answers you need. Take care.
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include: Purinethol, Colazal, Prednisone, and Remicade


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/29/2007 8:39 PM (GMT -7)   
It might help to get a third opinion, when two different GIs disagree.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/30/2007 9:09 AM (GMT -7)   
I feel your pain and confusion. I was positively diagnosed 18 months ago, when thru all the meds, and all my following tests have shown nothing, to the extent that my GI doesn't think I had crohns, but I have been in pain everyday since the beginning. NOW he looks back at my initial tests and says, well, let's give it one more shot and I am newly on humira, just to see if it helps! I love my GI as he never gives up, but living like this could make one nuts!
where is your pain? have you ever had any surgeries? yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


RedAurora
Regular Member


Date Joined Feb 2007
Total Posts : 88
   Posted 10/1/2007 9:49 AM (GMT -7)   
I havn't had any surgeries, they wanted to take out the infected intestine back in Feb but the GI wouldn't allow it. My pain is mostly in the upper left abdomen and usually after I eat. When i was dx it was in the ileium so everyone is confused why the pain has moved. I'm so freakin frustrated. I would love to not have Crohns but have such a hard time believeing it after all the hell I went through back in Feb. If its not crohns, why did all the biopsies come back positive? Why did I have inflammation all the way through my intestinal wall and into the fatty layer that covers your guts? Whats wrong with me. How can 2 trained GI's have such different opinions?

25 yr old female. Diagnosed with Crohn's on Feb 14th 2007 confined to the terminal ilieum, Asacol, Levsin, Nexium 40mg, Percocet, darvocet, phenergren.


poobah
Regular Member


Date Joined Dec 2006
Total Posts : 136
   Posted 10/2/2007 1:37 PM (GMT -7)   
  • you need. . . . the magic pill cam. And/or IBD serology.

megamax
Regular Member


Date Joined Apr 2007
Total Posts : 217
   Posted 10/3/2007 9:47 PM (GMT -7)   
poobah ...whta's \IBD Serology??? or anyone....
Megamax
 
 
35 yrs female, dx with crohn's on july 13th 07 increasing my  entocort 9mg 6mg tappering off . starting imuran 250 mg had a allergie reaction  can no longer take it  pariet ,dx with depression in 2002 ,effexor tappering off, welbutrin,resperidal and lemotrogine.
 
 


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/4/2007 3:33 AM (GMT -7)   
Maybe this is a new thread, but I have a question about serology. My GI told me that they sent some special bloodwork out and that my "serology" came back indicative of Crohn's, although he said the tests weren't "perfect" and that my other testing and symptoms corroborated these findings. Reading the posts above I'm reminded that I didn't follow up with him on this (I was really sick at the time).

What is the serology he would have had to send to a special lab? Some type of antibody test? I thought there wasn't a blood test for Crohn's? Any insights?
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 10/4/2007 12:14 PM (GMT -7)   
Probably one of the Prometheus tests from Prometheus Labs out in California.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/6/2007 4:37 AM (GMT -7)   
Yogaprof- do you think the treatment you had with prednisone and remicade was incomplete in that it reduced the CD to microscopic level only? In other words, it worked, but not quite good enough. Assuming I don't have visible disease in my small intestine (never had the pill cam and the SBFT was normal 4 years ago) my problem must be microscopic level and it has caused me a lot of misery in terms of pain. I hope Humira helps you.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now lexipro

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