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Crohn's Disease
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Posted 5/10/2008 2:49 AM (GMT 0)
Well I got some blood test results back, he was testing me to see if I had the form of Angioedema that was hereditary. Well my C1 level was low. So good chance now with the swelling I've been experiencing that I have it. He wants to retest me next week, still says he thinks the Crohn's could be doing this. I just don't buy that.

This is very scary for me, Crohn's was more then enough for me to deal with. Having something that could close my throat at any time, when things like steroids and benedryl won't touch it, is a bit more then I can handle. sad

Apparently AutoImmune disorders are common with people who have Hereditary Angioedema. Odd, because I never had any symptoms as a child, and no family history that I can think of. This is just a nightmare. So if you are of the praying type, please send a few my way!

 

Posted 5/10/2008 2:56 AM (GMT 0)
Jen,
My thoughts and prayers are with you-I pray you find the medical answers you need, comfort during this time and good health.
Sj
Posted 5/10/2008 3:07 AM (GMT 0)
My thoughts are with you Jen and I'm sending positive vibes your way that all will be fine and stay that way...think positive and know many are thinking of you!

:)
Posted 5/10/2008 3:09 AM (GMT 0)
((((((( Jennifer ))))))) Hugs, prayers and . . . Blessings!
Posted 5/10/2008 3:37 AM (GMT 0)
Sending hugs and prayers your way.
Posted 5/10/2008 3:53 AM (GMT 0)
((((Jen)))) big hug and prayers that all will turn out ok.
Posted 5/10/2008 5:20 AM (GMT 0)

Jen,

You have my prayers and I will ask others to offer their prayers for you.  Bless you and please know we all care deeply for you.

Hugs
Kitt

Posted 5/10/2008 11:39 AM (GMT 0)

Senduing hugs and prayers your way.

Anybody mention an epipen?? 

Posted 5/10/2008 2:12 PM (GMT 0)
Hi I sending hugs and prayers your way.
Posted 5/10/2008 2:40 PM (GMT 0)
Hi Jen,

I hope you get an answer from the tests soon. Once you know what it is, you can get your mind around it and figure out a way to deal with it. Bad medical news is such a shock at first and you can't see anyway out of it. But overtime, your natural resourcefullness will kick in and you will learn how to live with it!!!

Praying for your comfort and healing!

Isaiah 41
10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Psalm 103
1 Praise the LORD, O my soul;
all my inmost being, praise his holy name.
2 Praise the LORD, O my soul,
and forget not all his benefits-
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle's.
Posted 5/10/2008 3:40 PM (GMT 0)
Prayers going up as you read this!  (((BIG HUGS)))

Posted 5/10/2008 5:15 PM (GMT 0)
Thanks for all the prayers everyone, they are much appreciated. I'm going through that whole process, anger, denial, despressed, fear ect... Kinda like I did when I was told I had Crohn's. Only this seems to have even less treatments, and seems even more scary. :(

I'm a little frustrated that my doctor is still clinging on to "it still might be Crohn's causing these numbers" stuff. Feel like he's wasting precious time that I could be getting more help. I've never heard of someone having a low C1 number and it being related to Crohn's. So I'm just trying to hang in there.
Posted 5/11/2008 4:01 AM (GMT 0)
Hang in there Jen,
Let yourself feel and experience whatever emotion comes your way. When you try to suppress or deny it...it only makes it worse. Unfortunately , you can never sidestep or avoid them, they have a way of sneeking back into your mind and heart ...unless you them their due time. Journaling is a good way of getting "through" all that confusion....then someday, you can read back on those dark days and see how far you've come and how strong and courageous you were.
We are all here for you.... come to us often... You are in my prayers dear one.
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