Crohn's Disease Forum » Parents of Kids with IBD » CCFA Take Steps Walk

06-09-2013, 09:52 PM   #1
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

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CCFA Take Steps Walk

Our family did the CCFA Take Steps Walk today and I have to say, if you've never done one with your kids before, add it to your bucket list! Amazing!

Sometimes it seems like we're the only ones dealing with these awful diseases, but there were hundreds of orange shirts today. Hundreds! Just knowing that every single person there was there because they know or love someone with Crohn's or Colitis really touched my heart.

And how many pep rallies have you attended where you were motivated by yelling "Immunomodulators!" and "IBD!". It was hilarious when the emcee yelled, "Prednisone!" and everyone boo'ed. DS was just cracking up the whole time.

Oh, and it's not that often you can walk through an inflatable colon!

Truly a memorable experience and we're looking forward to doing it again next year. I have some pictures posted in my profile's album.

Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-09-2013, 10:01 PM   #2
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Devynnsmom's Avatar
Join Date: Jan 2012
Location: Toronto, Ontario
Devynn did the Gutsy walk today. We had a blast!! I shared some pics in a thread.
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
06-09-2013, 10:27 PM   #3
Jmrogers4's Avatar
That is great, I hope ours grows. It is still a little small but still fun. It was last Saturday and we had a live band. Jack has started off the walk the last 2 years. We did a TV interview the day before the walk but it was not on the news station site only a link to CCFA take steps. If I could figure out how to pull it off our DVR I would post it he did a fabulous job.
I think we need to get one of those inflatable colons!

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-09-2013, 10:34 PM   #4
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
It sounds like you had a fab time! Well done to your lad and all of you.

Love the pics too!

Dusty. xxx
Mum of 2 kids with Crohn's.
06-10-2013, 04:23 PM   #5
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ChampsMom's Avatar
Join Date: Mar 2011
Location: North East Coast - USA

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Very cool!

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
06-10-2013, 10:14 PM   #6
Senior Member
Join Date: Dec 2011
We did the take steps walk with H on Sunday. Was not quite as wild as yours but H had a great time. He wore his orange shirt with pride yesterday. He wore his take steps visor to junior golf today. Happy we went. Will go next year H is already designing his team shirts
Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
06-13-2013, 01:22 PM   #7
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Jenn's Avatar
Join Date: Jul 2011
Location: San Diego, California
Our Take Steps was in May, our 3rd time. it's a great way to raise awareness.
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections

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