03-30-2013, 08:19 PM   #181
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Twiggy930's Avatar
Join Date: Feb 2012
Location: Canada

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Hope things are improving for Claire.

Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-30-2013, 09:00 PM   #182
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CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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I'd be just like you - obsessing! What in the world! I guess it is better than what your mother reported... Maybe it has to do with that bleed clearing up from earlier?
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.
03-30-2013, 09:46 PM   #183
AZMOM's Avatar
Join Date: Nov 2010

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Well stool frequency is better, pain is worse. Fed her some of that organic blended food you suck out of a tube for dinner. It's about all she could tolerate. Couple more days of this and Im calling the doc.


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
03-31-2013, 10:54 PM   #184
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Thinking of you both J...

04-01-2013, 05:09 AM   #185
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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How's it going?
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
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,
04-01-2013, 05:12 AM   #186
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Niks's Avatar
Join Date: Nov 2012
Location: Swindon, United Kingdom

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Hope Claire is feeling better xx
Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
04-01-2013, 06:16 AM   #187
AZMOM's Avatar
Join Date: Nov 2010

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She slept 5 hrs yesterday afternoon. Stool situation stable. Pain under sternum complaints and back pain complaints did not change. Im working today and she'll be with my mom. I'll let you all know the report.


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