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04-08-2013, 03:49 PM   #1
AZMOM
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Uceris

Anybody try Uceris yet? It's Entocort in a new 9mg formulation. My understanding from Claire's GI is that it releases the steroid across the colon for more coverage. We started about a week ago and *crosses fingers* I think Claire is feeling just a little better!

Thought I'd share.....worth asking about if your child is currently using Entocort.

http://www.uceris.com/

J.
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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
04-08-2013, 03:58 PM   #2
Jim (POPS)
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I'm glad it seems to be working for you. I'm kinds new to all this but I just wanted to give you support.

Jim (Pops)
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Imuran 150mg a day
Entocort 9mg a day
B 12 shot once a month
Vit "C" and Iorn daily
04-08-2013, 04:49 PM   #3
my little penguin
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WOOHOO!!
never heard of it
but glad it seems to be working.
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04-08-2013, 04:59 PM   #4
AZMOM
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Yeah it's brand spanking new formulation - pharmacy had to order - but the diarrhea has come to a screaming halt. Im thankful!

J.
04-09-2013, 12:51 AM   #5
CarolinAlaska
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That's great, J! I'm so glad to read it!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
04-09-2013, 05:31 AM   #6
AZMOM
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I should never use the word screaming halt. Last night was screaming constipation. After an entire afternoon of her complaining and dropping one raisinette (our latest food related poop metaphor), I used a glycerin suppository. She retained it a little over half an hour and then tried to go, one little 2 inch skinny piece of hard stool came out. More crying. Abdomen a littlr distended. No relief. Went to pharmacy at 10pm to buy stool softener. Gave it to her and she finally fell Asleep.

Praying for poop this morning. I had just emailed GI yesterday to tell them I felt like Uceris was working. If she can't poop today, I guess I'll email again.

I feel schizophrenic.

04-09-2013, 06:44 AM   #7
DustyKat
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Whoa, what a ride J!

The new formulation sounds fab so I hope things even out and Claire gets long and lasting from it. Good luck!!!

Dusty.
04-09-2013, 08:44 AM   #8
Brian'sMom
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Going from Diarrhea to nothing can be an adjustment. (As you know You're a veteran to all this, I'm still learning- just sending my support) When we started Rowasa Brian went 3 days with no poop! I'll bet it needs some time for everything to adjust. All that liquid to become a log takes time! Brian was even beginning to like the D...'it was easy to get out' he said. (Trying to see the positive I guess!!)
I'm a firm believer that it never hurts to call tho. That's what we pay the big bucks for
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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.
04-09-2013, 09:59 AM   #9
Farmwife
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This is neat.
Grace's GI mentioned putting her on budesonide but since her problem are in her TI and colon this new one would help more. RIGHT?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-09-2013, 04:53 PM   #10
CarolinAlaska
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sounds right, FW!
04-09-2013, 07:54 PM   #11
AZMOM
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Farmwife - never hurts to ask!

Claire update: still can't "go". Started miralax. 3 days since she went. Not forever but an eternity for someone used to going at least twice a day.

J.
04-09-2013, 07:57 PM   #12
Farmwife
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Can she do Senakot (?sp). Senakot works with in 6-8 hours.
Miralax can take a few days. My Grace had to be on 1 1/2 cap fulls every day. Even than it didn't always work.
04-09-2013, 07:57 PM   #13
my little penguin
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suggest a gram scale- incase she has a sweet spot for miralax-( ie 1/2 capful not enough 3/4 capful too much)

we just measure grams - 17g is adult dose btw
04-09-2013, 07:58 PM   #14
my little penguin
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Senakot is a laxative- so not recommended in ibd patients unless really needed.
miralax is an osmotic so not as harsh- just pulls water into the stool.

we push juice and fruit cups ( soft no skins that start with P)
Pears, etc....
04-09-2013, 07:59 PM   #15
AZMOM
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Mlp - he said one capful daily and to update him. Should that amount make me nervous?

FW - I remember Graces constipation issues!

J.
04-09-2013, 08:00 PM   #16
my little penguin
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no ds was taking 1 cap a day for a long time-but he is an over achiever.
04-09-2013, 08:00 PM   #17
Farmwife
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Wow mlp, are GI said if Grace goes into day 3 and no bm...give her Senakot.
Thanks for the info!
04-09-2013, 08:05 PM   #18
AZMOM
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Ok no panic for now then. Just watching.....

Thanks for the support. I've been so excited about the Uceris.....hoping there's not going to be an issue.

J.
04-09-2013, 08:16 PM   #19
my little penguin
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What should I discuss with my health care provider before taking Senokot (senna)?

Ask a doctor, pharmacist, herbalist, or other healthcare provider if it is safe for you to use this product if you have:

a bowel disorder such as Crohn's disease or ulcerative colitis;

heart disease; or

stomach pain, nausea, or vomiting.


Read more at http://www.drugs.com/mtm/senokot.htm...k0ez3f4a8kO.99
Just for you FW
04-09-2013, 08:18 PM   #20
Farmwife
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Thanks
04-09-2013, 08:21 PM   #21
my little penguin
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http://www.ehow.com/how_2088546_trea...es.html#page=6

And here
Enjoy
04-09-2013, 08:27 PM   #22
Dexky
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Never any experience with constipation. There were times I prayed for a little C but alas, no! Is Claire still hurting?
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
04-09-2013, 08:29 PM   #23
AZMOM
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Dex. Yep.
04-10-2013, 11:20 AM   #24
my little penguin
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This why they don't like to over use senna

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2397000/
04-10-2013, 07:28 PM   #25
Dexky
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How's she doing today J?
04-10-2013, 07:31 PM   #26
AZMOM
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Well your timing is spot on . We just had success. Quite dark quite loose but success, nonetheless.
04-10-2013, 07:33 PM   #27
Dexky
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I hope she's feeling better too!!
04-10-2013, 07:35 PM   #28
AZMOM
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I think she is. Different girl than yesterday. Maybe because she's less FOS.

J.
04-10-2013, 07:39 PM   #29
Dexky
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Even I got that acronym
04-10-2013, 10:04 PM   #30
Brian'sMom
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It took me a minute...but I got it too!! Ha! Funny Glad she's 'less' of it
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