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

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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 9/18/2007 7:33 PM (GMT -8)
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

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lamb61
Veteran Member
Joined : Jan 2005
Posts : 1947
Posted 9/19/2007 2:20 AM (GMT -8)
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.
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teddybearweiser
Veteran Member
Joined : Oct 2004
Posts : 3042
Posted 9/19/2007 2:34 AM (GMT -8)
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.
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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 9/19/2007 5:32 AM (GMT -8)
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!
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Matthew
Veteran Member
Joined : Oct 2004
Posts : 3932
Posted 9/19/2007 7:01 AM (GMT -8)
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
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belleenstein
Veteran Member
Joined : Feb 2007
Posts : 1010
Posted 9/19/2007 11:34 AM (GMT -8)
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.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2411
Posted 9/19/2007 11:36 AM (GMT -8)
Agreed with Belleenstein: Taking Humira for a "maybe" diagnosis of Crohn's is, well, questionable.
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Zanne
Veteran Member
Joined : Apr 2005
Posts : 3763
Posted 9/19/2007 12:02 PM (GMT -8)
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.
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KitKatBaker
Veteran Member
Joined : Feb 2005
Posts : 1146
Posted 9/19/2007 12:05 PM (GMT -8)

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.

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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 9/19/2007 12:29 PM (GMT -8)
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
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gachrons
Veteran Member
Joined : Mar 2007
Posts : 4527
Posted 9/19/2007 2:59 PM (GMT -8)
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
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robstelo
New Member
Joined : Jul 2007
Posts : 9
Posted 9/23/2007 12:47 PM (GMT -8)
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!

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belleenstein
Veteran Member
Joined : Feb 2007
Posts : 1010
Posted 9/23/2007 1:12 PM (GMT -8)
Colonoscopies are only effective in diagnosing crohn's of the large bowel and (sometimes) the TI.
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dunny2
Veteran Member
Joined : Jan 2007
Posts : 3200
Posted 9/23/2007 2:54 PM (GMT -8)
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.
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yogaprof
Veteran Member
Joined : Apr 2006
Posts : 1665
Posted 9/23/2007 5:20 PM (GMT -8)
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.
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