Crohn's Disease Forum » Parents of Kids with IBD » Thoughts About Surviving Childinghood with IBD

04-10-2013, 01:28 PM   #1
ProspectorsQuartet's Avatar
Thoughts About Surviving Childinghood with IBD

I just read a post about kids getting bullied about their IBD. This is a tough experience and one I still have many memories about more than a decade removed from grade school. I thought maybe a support group with adults sharing their coping mechanisms and triumphs might be a good place for kids to check when they are feeling overwhelmed.

Crohn's DX 2012 (False UC 2011) - Symptoms since 1997
Current: 6 -MP 75 mg, Budesonide, 6 mg, Dr. Ohirra pro-B
Past: Flagyl, all Mesolamines (Asacol, Lialda etc...), Levsin, Donnatal(sneak one in here and there...)
Considering surgery
04-10-2013, 01:34 PM   #2
ProspectorsQuartet's Avatar
Whoops. I actually mean to create the support group here:
04-10-2013, 01:48 PM   #3
Super Moderator
afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
I wouldn't limit it to adult thoughts. There may be some kids that have really overcome being bullied that could give good advice or inspiration. I wasn't diagnosed until right after i graduated highschool so I don't have anything to add but i think its a great idea
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
04-10-2013, 02:03 PM   #4
ProspectorsQuartet's Avatar
Fair enough. Though I know there is a teens only forum somewhere here, so I'm guessing the youths are sharing with each other on that forum. I just wanted to have a place were adults with the disease could impart some personal experience. They are painful memories at times, but making it to adulthood with those memories give life to some interesting and hopefully useful advice for kids still dealing.

As long as parental consent is given, all are welcome!
04-10-2013, 03:35 PM   #5
Forum Monitor
Devynnsmom's Avatar
Join Date: Jan 2012
Location: Toronto, Ontario
That's a good idea! Thank you
Samantha, AKA Devynn's mom

Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-10-2013, 10:21 PM   #6
Senior Member
Brian'sMom's Avatar
Join Date: Dec 2010
Location: Kansas

My Support Groups:
ProspectorsQuartet: I like it. It'd be a look ahead for kids. And some tactics to use that worked. Good idea.
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.

Crohn's Disease Forum » Parents of Kids with IBD » Thoughts About Surviving Childinghood with IBD
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