Crohn's Disease Forum » Parents of Kids with IBD » Ways to Make Crohn's a little more liveable


03-06-2013, 01:37 AM   #1
CarolinAlaska
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Ways to Make Crohn's a little more liveable

I'm wondering what creative things you or your children do/have done to make their Crohn's treatments a little more enjoyable? I'd love to hear about/see pics when available, of the creative things you're doing.

My daughter has been coloring her Hyfix with colored pencils and each day I find a different artistic picture on her cheek when I come home from work. This is the latest:
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-06-2013, 03:00 AM   #2
CeeCeeGo
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That is a lovely idea.
I don't have any children and I can't imagine what it must be like watching your child go through this illness.
What is so clear from this forum is that a lot of these young people have great parents (like you) and I am sure that it helps.
All my best wishes to your lovely, creative girl and you. 😎
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Carol

DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Stelara (Nov 2017), Budesonide (when required), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
03-06-2013, 06:24 AM   #3
Dexky
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My son used to draw cartoons. I called them EJ's Crohn's-icles. Hmmm…I had a few on here…

Here's one
http://www.crohnsforum.com/showthread.php?t=12656

It was just a phase I guess…I haven't seen him draw in quite a while.
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-06-2013, 06:47 AM   #4
AZMOM
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That is precious!!!!!!!
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-06-2013, 07:37 AM   #5
Farmwife
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We call it .......Tube Fishing.

Grace makes and cuts out paper fish.
Stick a peice of tape to the end of her n-g tube.
And...fishes off the "dock" of our sofa.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
03-06-2013, 08:51 AM   #6
Tesscorm
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Wow, love how these kids can find fun in this!!! And great ideas too!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-06-2013, 02:18 PM   #7
CeeCeeGo
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Tube Fishing sounds like great fun! 😎
03-06-2013, 05:36 PM   #8
CarolinAlaska
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Mark, I enjoyed that little cartoon by your son. It's so true. I couldn't find any of your son's other Chron-icles when I searched by his name.

Fishing is a fun idea. Didn't you also decorate her tower something princess-tower-ish? I'd like to see a pic of that...
03-06-2013, 05:49 PM   #9
Jmrogers4
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Carol, She is quite an artist.
Mark, That is great, we joke about that too. First breakfast (pills) and bedtime snack (more pills)
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Jacqui

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
03-06-2013, 10:03 PM   #10
Devynnsmom
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She's a great artist!!
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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
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