Prayers good thoughts needed

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Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/9/2008 7:49 PM (GMT -7)   
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!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 5/9/2008 7:56 PM (GMT -7)   
My thoughts and prayers are with you-I pray you find the medical answers you need, comfort during this time and good health.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 5/9/2008 8:07 PM (GMT -7)   
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!

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2008 8:09 PM (GMT -7)   
((((((( Jennifer )))))))

Hugs, prayers and . . .


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

potty pooper
Regular Member

Date Joined Dec 2006
Total Posts : 375
   Posted 5/9/2008 8:37 PM (GMT -7)   
Sending hugs and prayers your way.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 5/9/2008 8:53 PM (GMT -7)   
((((Jen)))) big hug and prayers that all will turn out ok.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 5/9/2008 10:20 PM (GMT -7)   


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.


Kitt, Moderator: Anxiety ~ Panic 
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 5/10/2008 4:39 AM (GMT -7)   

Senduing hugs and prayers your way.


Anybody mention an epipen?? 

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 5/10/2008 7:12 AM (GMT -7)   
Hi I sending hugs and prayers your way.
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.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 5/10/2008 7:40 AM (GMT -7)   
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.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/10/2008 8:40 AM (GMT -7)   
Prayers going up as you read this!  (((BIG HUGS)))

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/10/2008 10:15 AM (GMT -7)   
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.
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 5/10/2008 9:01 PM (GMT -7)   
Hang in there Jen,
Let yourself feel and experience whatever emotion comes your way. When you try to suppress or deny 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.
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis

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