05-01-2017, 03:25 PM   #1
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Location: Fairfax, Virginia

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Surgery update

Everyone, I posted about a month ago asking for suggestions on what to take with us to the hospital when my daughter had her surgery and some of those suggestions were priceless -thank you!

I just wanted to post an update to give some encouragement to those whose kids might have to have a resection at some point. My daughter was diagnosed with Crohn's in October 2015. She did a course of EEN for 12 weeks and it helped her pain and gave her immediate relief. She started on Remicade two months later and she's been doing great on it (it even healed an internal fistula!), but she was still having occasional issues with pain. It was determined that she had hardening and narrowing at the terminal ileum that could not be healed (long-term damage) and, after consulting two surgeons, we determined that it needed to come out. We were told that outcomes and recovery are better if surgery is done when you are "well", so my daughter chose to have surgery over spring break (she's 16).

She went into the hospital on April 11th and the surgery that was supposed to take 2-4 hours (laparoscopically) took less than an hour! She was released from the hospital on the 14th and was off pain meds (including Tylenol) three days after that. We were told that she'd be very tired and sleep a lot - she only napped at home twice post surgery. She was back to school part time exactly a week after surgery and she'll be back full time tomorrow!

She's not 100% yet, mind you, but she's 90%, which is much more than I could have imagined. Maybe my daughter's experience with resection was atypical, but I hope that someone facing similar circumstances will read this and take heart.

As always, thank you all for your amazing support! I know that our journey with Crohn's is not over, but hopefully my daughter can focus on regular teenager stuff for a while :-)
05-01-2017, 03:56 PM   #2
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Wow!! What wonderful news!! So glad it went so smoothly.

I hope she will be able to do regular teenage stuff for a LONG time and won't have to worry about Crohn's at all!

Really glad it went so well. I know she's feeling good, but I hope she doesn't overdo it with school. No harm in taking it easy for a few more days.

I know it's hard to convince a teenager to take it easy though .
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-01-2017, 08:11 PM   #3
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Join Date: Dec 2014
Location: Portland, Oregon

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I'm so glad to hear that everything went so well. Thanks for the update!
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
05-01-2017, 10:48 PM   #4
Jane and Nick
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That's wonderful news, well done her and well done you ! Long may she continue feeding great.
05-02-2017, 05:15 AM   #5
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Join Date: Jul 2015
Location: Ireland

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That is fantastic news. Thank you for sharing xo
Son diagnosed age 12 - July 2015

Past medication - 10 weeks modulen NG tube july 2015, Azathioprine

Surgery - Appendectomy, right hemicolectomy and part terminal ileum removed open surgery June 2016

8 weeks modulen NG tube June 2016

Current Medication - Started August 2016 Infliximab, azathioprine, vit D supplements started September 2016

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