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Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Crohns Support Group for families in NYC area?


02-19-2013, 03:09 AM   #1
taylorali
 
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Crohns Support Group for families in NYC area?

Hi All,

I was wondering if anyone from the NYC area knows of any support groups for families of people with crohns/colitis to attend to learn more about how to take care of someone who is suffering from this disease.

Recently, my fiance & my sister have been taking care of me. My parents seem to be out of the picture. They both want to learn more about the disease and how they can be more helpful & understanding.

I know sometimes we complain that people don't understand the disease, but I can't imagine having to watch someone I love go through what I go through on a daily basis having no idea that this illness even existed before I was diagnosed.

Anything would be helpful! Thank yoU!
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Ali

Crohn's Disease - Diagnosed 1/10

Surgeries:
1st Resection-9/10
2nd Resection 1/13
Gallbladder 9/13

Currently: In severe back pain after gallbladder surgery with no answers.

Past Meds: Remicade, Azathioprine, Prednisone, Flagyl, Cipro, 6mp, Entocort, Pentasa, Celebrax, Humira bi-weekly, Ambien, Xanax

Current Meds:
Humira Weekly, Seroquel, Protonix, Klonopin, Lexapro, Iron Supplement, Zantac, Gas-X, Biotin, B12, Culturele, Zofran, Weekly Iron Infusions
02-21-2013, 02:09 PM   #2
Cat-a-Tonic
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Hi, I don't know of any in-person support groups in that area, but I didn't want your post to go without any replies. I think I'll tag Pasobuff here as she is in that general-ish area and might know of something.

Have you thought about showing your sister & fiance' the forum? They might be able to understand better if they read some of the things that you and others have written here. Another thought is to have them read the Spoon Theory. It's an essay about what it's like to live with a chronic illness (the writer has Lupus but it's still relevant). Here's the link:
http://www.butyoudontlooksick.com/wp...-spoon-theory/

I hope that helps a little bit. Sending you a big hug!
02-21-2013, 03:12 PM   #3
Lisa
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Hi - I agree with Cat about asking them to join the forum and read through here - there is also a sub-forum for family/care givers....

I don't know of any groups near you, I'm about 3 hours away, up past Albany....but if there is anything I can do to help, please let me know here or via PM...
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
02-21-2013, 03:22 PM   #4
GutlessWonder86
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go to this site and type in your zip code and it will show you the nearest support group.

http://www.ccfa.org/living-with-croh...support-group/
02-22-2013, 08:57 AM   #5
taylorali
 
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Hi, I don't know of any in-person support groups in that area, but I didn't want your post to go without any replies. I think I'll tag Pasobuff here as she is in that general-ish area and might know of something.

Have you thought about showing your sister & fiance' the forum? They might be able to understand better if they read some of the things that you and others have written here. Another thought is to have them read the Spoon Theory. It's an essay about what it's like to live with a chronic illness (the writer has Lupus but it's still relevant). Here's the link:
http://www.butyoudontlooksick.com/wp...-spoon-theory/

I hope that helps a little bit. Sending you a big hug!

One of my best friends actually sent this to me. It really hits homes completely for how I feel! Thank you for sharing it with me again. They are actually both going to join this forum as they truly want to help. I've been in touch with a member of the CCFA in NYC and found out about the times of meetings and such. My fiance and I are going to go together and my sister as well, when she can. She's in college-so she has a crazzzy schedule!

Thank you so much for replying and again sending me this link! I had lost it and it was so nice to read it again.
02-22-2013, 08:58 AM   #6
taylorali
 
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Join Date: Feb 2013
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Hi - I agree with Cat about asking them to join the forum and read through here - there is also a sub-forum for family/care givers....

I don't know of any groups near you, I'm about 3 hours away, up past Albany....but if there is anything I can do to help, please let me know here or via PM...

Thank you so much!
02-22-2013, 08:58 AM   #7
taylorali
 
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Join Date: Feb 2013
Location: Yonkers, NY

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go to this site and type in your zip code and it will show you the nearest support group.

http://www.ccfa.org/living-with-croh...support-group/
Thank you Lisa! I was able to find my local support group through this website!! You're the best!!
03-09-2013, 12:40 PM   #8
nogutsnoglory
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The CCFA support groups are open to caretakers, family and friends. Basically anyone who wants to talk IBD is welcome.
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