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05-05-2013, 03:27 AM   #61
incik
 
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Hi!

We just found this forum and here is my daughter's story.
She was 2 years when Crohn was diagnosed, pain and bleeding every day. We had one bad flare up, 7weeks in hospital with feeding through neck.

She was taking prednisolon and after that Imuran. We started to use SCD diet when she was 3 years old, soon we could skip Imuran. It took 1year, then symptoms were gone and we continued with SCD diet one more year. When she was 5 years old, we slowly introtuced foods, which were prohibited during diet.
Now, when she is 7 years, we avoid wheat, lactose and white sugar.

That is our story. (sorry for my english, it isn't my mother language)
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Mom for 7 y daughter.
Crohn d-d 2008
SCD Diet 2 years,
now avoid wheat,lactose,sugar.
No meds last 3 years.
05-05-2013, 03:37 AM   #62
CarolinAlaska
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Hi!

We just found this forum and here is my daughter's story.
She was 2 years when Crohn was diagnosed, pain and bleeding every day. We had one bad flare up, 7weeks in hospital with feeding through neck.

She was taking prednisolon and after that Imuran. We started to use SCD diet when she was 3 years old, soon we could skip Imuran. It took 1year, then symptoms were gone and we continued with SCD diet one more year. When she was 5 years old, we slowly introtuced foods, which were prohibited during diet.
Now, when she is 7 years, we avoid wheat, lactose and white sugar.

That is our story. (sorry for my english, it isn't my mother language)
I'm glad to hear of your daughter's good story. I assume she is doing well now with her foods too? May she long stay in remission!
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Carol
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.
05-14-2013, 05:44 AM   #63
DustyKat
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Hey incik,

It is so wonderful to read that your daughter is doing so well on diet. I hope all continues this way and your daughter has many, many years of good health!



Dusty. xxx
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05-14-2013, 02:51 PM   #64
ChampsMom
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Hi incik,

Welcome to the forum and thank you for sharing your daughter's story! What a great blessing that she is doing so well!!

Love hearing good news!
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Shell

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)
Prayer
Priesthood Blessings
07-09-2013, 08:49 PM   #65
DustyKat
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Well today is the day, 10th July, 7 years ago that Sarah had her emergency surgery and also received her diagnosis.
Surgery put her into remission and she has remained that way since. She tells me she is still taking her Imuran, she is on various supplements, as my signature states, as I don't know exactly what she takes!

She feels well and looks well, is living life to full at university and beyond, is very happy with the relationship she is in and well hey...it can't get better than that! Except for a cure!

Sometimes the last 7 years seem a lifetime ago but again they often feel as if it was only yesterday I was sitting outside the operating theatre.

Onward and Upwards!

Happy Dusty.
07-09-2013, 09:20 PM   #66
my little penguin
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Woo hoo for seven years
Long may it continue !!!!!
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DS - -Crohn's -Stelara
07-09-2013, 09:30 PM   #67
ChampsMom
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Praise the Lord! Hoot! Hoot!!
07-09-2013, 09:37 PM   #68
ChampsMom
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Okay - here's 2 totally different success stories...

First: Today Alex (IBDer) threw a 102 mph pitch (baseball)! I almost fell over.

Second: My youngest son (age 4) who is on the Autism Spectrum PDD-NOS conquered potty training!! I had really worried about this, as he's number 3 boy and the other two were trained MUCH earlier... But as he has done with everything else to date - all in his own time. Once he decided it was a 4 day change over and we now he is 2 weeks dry and said we can get rid of the pull-ups he doesn't need them any more

Gotta go now because I can hear him beating up the 13 and 16 year olds...
07-09-2013, 10:53 PM   #69
Jmrogers4
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Wow! Fabulous Dusty. Long may it continue
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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
07-10-2013, 05:10 AM   #70
Dexky
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First: Today Alex (IBDer) threw a 102 mph pitch (baseball)! I almost fell over.
He's 16?? Tell him to save his arm!!! Do not continue to throw that hard through high school!! How is his accuracy? You do realize how special that is, don't you??
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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
07-10-2013, 11:49 AM   #71
ChampsMom
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He's 16?? Tell him to save his arm!!! Do not continue to throw that hard through high school!! How is his accuracy? You do realize how special that is, don't you??
He turned 16 in December, yes. He has always been very athletic and has phenomenal (not a Mom blowing smoke, I mean eerie phenomenal) eye-hand coordination (could throw a ball in the air and knock it across the yard at 18 months)... He played baseball until 5 years ago (pitcher/catcher most of the time), but quit to play ice hockey (much to my HUGE disappointment, I played softball through college)... But then he was really good in hockey - this past year he led his team in points (tied for goals with another player but led in assists - which interestingly enough was his goal - he wanted to get every kid on the team a goal this year and got everyone but one.)

He's *just* got back into baseball this year playing shortstop, pitcher most of the time and is batting 400-500 (*love* watching him get up to bat - he's a lean kid so his first up they tend to move in, and *slam*!!! the rest of the game the outfield is sitting on the fence - ...)

I know the High School is working hard to get approval for him to play (he's on Home & Hospital Instruction so receives his education through the county at home and they want him on the field - so we are working on getting the doctor to write up why he should not be in school all day, but can show up and play games - it isn't too much of a stretch - missing 2 days of school when you don't feel well has huge consequences, missing a game or practice, not so much).

I think he needs a pitching coach - I played 3rd base, so I'm not much help there - so I'll talk to him about it. He needs to work on his accuracy as he manages to hit at least one kid every other game, but otherwise he's the number 2 pitcher on his Club team right now.
07-10-2013, 12:33 PM   #72
Tesscorm
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I know little about baseball, but it all sounds GREAT! Good for him, I hope they can manage to get him on the team! Being a player yourself, you must be very happy!
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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
07-10-2013, 12:37 PM   #73
Tesscorm
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Dusty - kept meaning to come back to this thread!! Amazing how well Sarah has done! Not only crohns-wise directly; she really is an inspiration for all parents who fear future limitations! Sarah certainly overcame challenges and has only forged ahead!! Way to go Sarah!!! (If I were you, I'd put away that rocking chair! )

Last edited by Tesscorm; 07-10-2013 at 01:19 PM.
07-10-2013, 03:55 PM   #74
Jmrogers4
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Okay -

First: Today Alex (IBDer) threw a 102 mph pitch (baseball)! I almost fell over.
Jack says DAAAANG!!!!, was it a fast ball? He loves baseball, hates to pitch though, he likes to play catcher.
07-10-2013, 04:08 PM   #75
Clash
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Awesome success for Sarah with CD and life in general!

Way to go Alex! I know you are a proud Mama!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-11-2013, 04:47 AM   #76
Dexky
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he manages to hit at least one kid every other game
I wouldn't want to be that kid!!
07-11-2013, 08:42 AM   #77
DustyKat
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Ugh! That was like reading another language!

Well done and bravo to your lad Shell!

Foreign language and all even I could could tell it was brilliant!

Dusty.
07-15-2013, 10:23 AM   #78
QueenGothel
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Rowan is officially over the 1 year hump from takedown. The short story of it all is she was diagnosed UC, never responded to any medications including Remi. Her bleeding was so bad she needed frequent blood transfusions. She had her proctocolectomy, j-pouch, Mucosectomy, ileostomy surgery April 2012, takedown 2 months later. A few more very scary bumps along the way which put her back in the operating room twice for lysis of adhesions and an omemtumectomy. Fast forward now 7 months she is doing very well. They told me to worry about dehydration and frequent bathroom trips and she only uses the bathroom on average 3 times a day has no incontience issues and is living her life to the fullest now as a five year old should. It has been a rough road and I am certain we are going to have more bumps in the road but for now I live in the moment and that moment is full of hope for the first time since our journey began back in Oct 2011 when I met all of you.

<3
07-15-2013, 10:41 AM   #79
ChampsMom
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Yeah Mary!! What a blessing... I pray for long, long, LONG roads with NO bumps!!
07-15-2013, 10:53 AM   #80
Tesscorm
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Mary, what a great post!!! I am so happy to hear all is going well! You two certainly deserve a smooth sailing from now on!!! NO more bumps!

07-15-2013, 02:25 PM   #81
DustyKat
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Wow Mary! Where does the time go!

It is so brilliant to read that Rowan is doing wonderfully well. Lord knows she deserves it, as you all do. My wish for you is that the road ahead is the smoothest and straightest without even the teeniest bump in sight! Good luck!



Dusty. xxx
07-16-2013, 05:51 AM   #82
Dexky
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May she have all her -omies behind her Mary. She has been through enough!!!
07-16-2013, 09:28 PM   #83
Mehita
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Yeah for Rowan! Is she off to Kindergarten in the fall?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
07-16-2013, 09:34 PM   #84
Jmrogers4
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That is great Mary, hope there are no more bumps for Rowan.
07-17-2013, 12:16 PM   #85
crohnsinct
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I shy away from posting our success because so many are struggling but I guess I feel I should to give encouragement.

Had our every 3 month appointment with the GI yesterday. O has now grown 4 1/2 inches and gained 22 pounds since diagnosis. She is doing great. She just moved out of the anorexic category with a 15.7 BMI! We are still working on weight.

Doc has approved her training for a half marathon (to benefit the IBD clinic) in October. But we are to weigh weekly and if she drops pull training.

Since we added the Mtx in April he is now ready to entertain moving out her infusion schedule out. We will do our next at 5 weeks and after that see if we can make it to 6.

We go back mid November so pushed out to 4 months! Probably because he knows he can count on me to call if anything transpires

Her swimming and running are going fab and she got straight A's all school year.

I was so happy about the moving of Remicade I forgot to ask about dropping Prevacid Oh well, simple email to the nurse...wouldn't want her to miss me

Oh and P.S. Scopes will be done in 2014. He said he really thinks all is well but he has to do the responsible thing and go in and look. He will work with us so she misses minimal school and it doesn't interfere with her sports and championships etc.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-17-2013, 12:31 PM   #86
Tesscorm
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That's great news!! Wow, 22 pounds is huge! Especially given her swimming and track activities!

Way to go O!! (And mama too... for keeping her on track! )
07-17-2013, 12:58 PM   #87
Jmrogers4
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Wow! That is fabulous! Way to go O! Now go have a glass of wine, CIC and celebrate a little.
07-17-2013, 01:18 PM   #88
upsetmom
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Great news!!!!

I'm glad everything's going well.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



07-17-2013, 03:43 PM   #89
ChampsMom
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Woo hoo CIC!! That's awesome news all around!!

Thanks for sharing!!
07-17-2013, 05:10 PM   #90
my little penguin
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Wonderful News!!!
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