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Crohn's Disease Forum » Parents of Kids with IBD » With happy tears.....Surgery has made a difference!


08-28-2016, 02:56 PM   #1
FranG
 
Join Date: Apr 2016
Location: Florida
With happy tears.....Surgery has made a difference!

Dear Friends, I had written back about a month ago about all the problems my courageous son was having over the past six or so months with Crohns. We were in and out of the hospital since his diagnosis this past March. After a second opinion at Boston's Children's Hospital, it was recommended that our son might very well require surgery. After seeing little results with medication (not because the medication wasn't working but because the area of intestine was so diseased), we opted for surgery. We were quite scared, but knew that this seemed to be the only option for our son. This past July, he underwent an ilieocecal bowel resection, and I have to say, he's been doing amazingly well. We are beyond thrilled for our son. He is eating well, back to playing golf on his school golf team, socializing with his friends, and just feeling much, much better. We realize that surgery is not a cure, but we feel as though we've come out on top; if you will. It was four months of poor health, stress, tears, and a feeling of powerlessness. He'll continue being treated with Remicade in hopes that we can keep this disease away. (We are so thankful to everyone at Boston's Children's Hospital who restored my son's health. I've nothing but the utmost respect for the professionals at this institution). Again, I've such admiration for those battling IBD. The struggle is real....and how I've seen that struggle in my son's eyes and every part of his being. Today, however, I can let out a deep breath and say with happy tears, that surgery made a difference....a big difference!
08-28-2016, 04:32 PM   #2
Farmwife
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Happy Dance
What a great update!
Long may it keep and continue.
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-28-2016, 06:39 PM   #3
Maya142
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So glad he is doing better! Hope he has a wonderful year at school!
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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
08-28-2016, 07:19 PM   #4
ronroush7
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That is fantastic.
08-28-2016, 07:48 PM   #5
my little penguin
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Such wonderful news
Long may it continue
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DS - -Crohn's -Stelara
08-28-2016, 08:02 PM   #6
pdx
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Location: Portland, Oregon

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So glad to hear this news! Thanks for the update.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-28-2016, 08:31 PM   #7
Pilgrim
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Thank you for sharing this happy story.
08-29-2016, 08:28 AM   #8
Tesscorm
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What a happy update!! I hope remicade can keep him in remission for many, many years!!
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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
08-29-2016, 09:48 AM   #9
Sascot
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Great news, hope it lasts for a very long time
08-29-2016, 09:55 AM   #10
CrohnsKidMom
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Fantastic! So glad the surgery went well and your son is able to return to normal activities!
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Son diagnosed with Crohn's March 2013, at age 8
09-07-2016, 06:29 PM   #11
Mehita
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That's so wonderful! Same story with my son. He got his life back after his resection. It. Was. Amazing!
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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
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