Need help finding a support group for my Daughter

Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Moderator: pmaxwell

Need help finding a support group for my Daughter

Postby Amy Joe » Sun Mar 30, 2008 6:27 am

My baby is 21, her name is Elizabeth. I share all the time this site with her and she is despertly searching a place she can go to as well.

This is her medical overview:

MVA in 1990, she was 3 1/2. Seatbelt perforated her small intestine. She had Intestinal peritinitis and spent 66 days in the hospital. Left with a fisctual. Her insides were coated with barium, so she glows. Full of adhesions and scare tissue.

2003 due to adhesions she developed a completely impacted bowel. Another major surgery and a fiscula. She is still full of adhesions. Her scar looks like a battlefield gut wound, very ugly.

So this is what her pedi surgeon has said: She does not have chrones but she has a systems that is like chrones. She can not carry a child due to the stomach structure or lack of it. She has chronic pain from the scar tissue on both inside and outside. She can not stand of sit straight due to the pulling on her scars. She is very likely to have an impact again due to scarring.

So, where can I send her to have support like I do! I hope someone has an idea where to guide us.

Thanks

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
User avatar
Amy Joe
 
Posts: 2919
Joined: Tue Jan 01, 2008 10:52 am
Location: Fitchburg, Ma

Postby ke4uzj » Sun Mar 30, 2008 10:46 am

amy , are you looking for online support or an actual in person support group . if it is in person where does she live and i'll see if i can find something.
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
User avatar
ke4uzj
 
Posts: 504
Joined: Sun Feb 03, 2008 4:27 pm

site

Postby razzle51 » Sun Mar 30, 2008 12:27 pm

this is a great site too with folks her age and Chrons is listed .

http://www.healingwell.com/community/
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

User avatar
razzle51
 
Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

Postby Amy Joe » Sun Mar 30, 2008 1:27 pm

Online support. A place where others have had intestinal surgeries.

Thanks

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
User avatar
Amy Joe
 
Posts: 2919
Joined: Tue Jan 01, 2008 10:52 am
Location: Fitchburg, Ma

Hello

Postby preciousheide » Sun Mar 30, 2008 5:44 pm

I just wanted to pop in on this one just to say good luck to her! I know how important it is to have support on complicated issues.

I was so alone before this website.

Hopefully you will find the right place soon. I agree that the best kind of support is others who are dealing with close to the same thing.

Just remember, that if hers is not "EXACTLY" the same as others, its o.k.

none of us on this website are "IDENTICAL"

Well, I just wanted to say good luck. If she ever wants to chat she can message me. I dont have what she has but I can listen.

Heide
preciousheide
 
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska


Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 7 guests

cron