good grief...now my GI says "maybe you DO have crohns!

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yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 9/18/2007 8:33 PM (GMT -7)   
went to the doc today and he looked over all my tests from 18 months ago and said, "Gee, this does look like crohns." Now he wants me to try Humira as he thinks it is fabulous. I have my nifty box of info beside me (with DVD!) and need to make an appt with the nurse to show me how to use it. I don't know what to think...I want to ignore the whole darn thing. 
so, here I am, once again, up in the air! thanks you all, 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 imipramine...living with pain, but doing ok.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 9/19/2007 3:20 AM (GMT -7)   
Oh YP.........as much as I don't want you to have a CD diagnosis at least it would be an answer as to what has been going on. Anyway, I hope the Humira gives you some relief.
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/19/2007 3:34 AM (GMT -7)   
Hi YP.. I hope the Humira give you relief. Atleast being dianosed with crohn's you now
what you are dealing with. I think its always better to no then not to no.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 9/19/2007 6:32 AM (GMT -7)   
thanks for the good wishes! sadly, it still wasn't a diagnosis; just a maybe. I have been living with maybe for a bit too long! it is a good thing I am easy-going, or I would be nuts!
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 imipramine...living with pain, but doing ok.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/19/2007 8:01 AM (GMT -7)   
But its likely the closest thing you are going to get, & he wants to treat you. Hey, at least it wasn't passed off as IBS & treated like that. Sorry, but you suspected all along right? Again another IBDer who reminds me of myself back in '93. Is this a trend this month?

Matthew

belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 9/19/2007 12:34 PM (GMT -7)   
I'm having a hard time getting my head around prescribing a drug like Humira for a "maybe" diagnosis. Still, if it works I guess you will have your answer.
Belleenstein:

30+ years living with Crohn's.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 9/19/2007 12:36 PM (GMT -7)   
Agreed with Belleenstein: Taking Humira for a "maybe" diagnosis of Crohn's is, well, questionable.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/19/2007 1:02 PM (GMT -7)   
You really don't ever need to go to amusement parks do you, your life is one rollercoaster ride after the other!

I agree, if it works, then I guess you have your answer.

I told the doctors what I had and was promptly told I was wrong. SO I ignored it for 10 years cause I didn't have Crohns. Well when the S&^t hit the fan, I didn't even mention family history or CD at all, oh the suffering I could have avoided. At least you have continued to push for answers and tests. I give you so much credit. None of us want a diagnosis and some of us will go to almost any lengths to avoid it even endangering our lives. I'm sorry you have a "maybe" diagnosis but it does mean that maybe some healing can begin and that is always a good thing.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 9/19/2007 1:05 PM (GMT -7)   

i believe that yogaprof has been through other treatment options even without a diagnosis.  So it's not like Humira was the first thing brought to the table.


Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
Help support Healingwell!!!
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/19/2007 1:29 PM (GMT -7)   
I guess I can explain why Humira. my initial SBFT, CT Scan, c-scope and biopsies all showed inflammation and were given a crohns diagnosis. after pred and other meds the inflammation went away, but pain stayed. they found adhesions and cut them, which helped some, but the initial pain is the same. my GI never quite believed the diagnosis, because of my age and adhesions. however, after he looked at the records again he decided it is most likely a combo of adhesions and crohns and that it was worth a shot--or two, or six :)

i am lucky to have great insurance and a GI who continues to try to help. I told him yesterday that if he would just tell me the pain is there, but I am ok, I could live with it. but he won't give up. he really wants to figure this out.

I am so appreciative of you all. keep those questions and answers coming! 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 imipramine...living with pain, but doing ok.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/19/2007 3:59 PM (GMT -7)   
Hi Just wanted to say hope the Hum.works for you and that it gives you some relief from your pain.Do we need to give you another welcome since we cain't send out a cake ?I know you have been going threw a lot and indeed I know you must have been very frustrated at times .Best Wishes. lol gail

robstelo
New Member


Date Joined Jul 2007
Total Posts : 9
   Posted 9/23/2007 1:47 PM (GMT -7)   
sorry to hear of your distress
im not expert, but the way to be sure is with a colonoscopy
isnt pleasant, but thats a way to know for sure if you got our lovley desease
named chron!

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/23/2007 2:12 PM (GMT -7)   
Colonoscopies are only effective in diagnosing crohn's of the large bowel and (sometimes) the TI.
Belleenstein:

30+ years living with Crohn's.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/23/2007 3:54 PM (GMT -7)   
YP, I have so much empathy for you. When we have something going wrong with our bodies, it's hard enough, but to not
have a name for it, is the hardest. None of us want to hear that there's a problem, but it does seem so much easier, when
we know the enemy. I only went about 2 years without dx, but that was bad enough. I went through all those awful emotions,
swinging, from is it cancer, to the, it's all in my head syndrome.
I'm so pleased that through all this, you've had a decent doctor to help you through, this could've been far worse, had you have
had some a******* that wasn't even willing to listen.
I hope you find some relief with humira. I wish you all the best.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/23/2007 6:20 PM (GMT -7)   
I have had two colonscopies; the first showed ulceration, inflammation, and the biopsy showed crohns. the second showed only a questionable biopsy and all else was fine. thus it all goes on.
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 preparing to begin Humira.

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