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Crohn's Disease / Ulcerative Colitis Message Board
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Old 05-19-2011, 10:43 AM   #1
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Chuckie61 HB User
I Could Sure Use Some Assurance...

I have had 5 or 6 abdominal surgeries due to my Crohn's Disease of one kind or another over the last 25 or so years and I finally had my doctors take down my J pouch for a straight up Ileostomy. But I have had terrible pain increasingly over the years since 1999 when I had my Ileostomy and some say they are adhesions. It seems that I have some kind of Autonomic Neuropathy in my belly as well and that together these cause real problems . I have finally gotten some pain management for it. The pain meds do not help much, but they do take the edge off. My main concern is that some doctors have told me that the the pain in my abdomen is simply in my head and that it is not real. I just don't know what to think. Sometimes it is about as real as it can possibly be... I get to around an 8 or a 9 on the pain scale sometimes. And there is no active Crohn's. Please tell me, though, that this is real and that I am not doing this to myself. Every fibre of my being tells me its real, but when you hear it from a doctor that it is not, there is a part of you that worries that it really is all in your head. Could you give me some good words of advice ? Thanks.

 
Old 07-06-2011, 12:50 AM   #2
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Join Date: Jul 2011
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faefeverfan HB User
Re: I Could Sure Use Some Assurance...

I'm real sorry, I wish I could say something to help. People just tell me that crohn's is a pain I will have the rest of my life. Have you tried Remicade treatment? It worked miracles for me.

 
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Old 07-06-2011, 09:52 AM   #3
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Lindy77 HB User
Re: I Could Sure Use Some Assurance...

Hi,
Sorry to hear of your condition and that you're experiencing horrible pain (is your pain constant or only when your disease is active?). I have UC and it's accompanied by extreme pain, in which my doctors are completely baffled about. Luckily, my doctors and pain management doctor understand just how real and horrific my pain is (I'm currently in a flare.) It's too bad that some doctors accuse their patients of making up the pain. Go with your instincts; If you're having pain, then you should do something about it. And if it's affecting your quality of life, you need to address that. Do you have a pain management doctor?
__________________
.Lindy.

 
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adhesions, autonomic neuropathy, crohn's



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