Crohn's Disease Forum » Parents of Kids with IBD » And, so it's come.....Surgery.

07-18-2016, 02:30 PM   #1
Join Date: Apr 2016
Location: Florida
And, so it's come.....Surgery.

Hello Friends, it's been a rather rough journey, and things don't seem to be improving for my boy. After seeing his doctor today, and after his fourth hospitalization in five months, and after repeated UTI's which he never had until two months ago, they're concerned about a connection between the bladder and colon now, however, it's so hard to clearly distinguish from imaging due to the inflammation. We will be headed to Boston's Children's Hospital for his surgery. I'm beyond petrified and would love to hear from others who's children have gone this route, and also from any of you who might be able to shed some light on this subject! Thank you so much. (This disease is just beyond. My prayers go out to all those afflicted with Crohn's and Colitis. True survivors in my opinion. My boy is my hero!) 😢
07-18-2016, 02:46 PM   #2
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Maya142's Avatar
I'm so sorry to hear he needs surgery. I'll tag Clash and Kimmidwife, whose kids have had surgery before.
Good luck -- I hope the surgery brings him the relief he needs!!
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
07-18-2016, 02:58 PM   #3
Join Date: Apr 2016
Location: Florida
Oh thank you so much Maya. Appreciate your help!
07-18-2016, 03:23 PM   #4
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Clash's Avatar
My son required an ilecocecectomy due to continued inflammation at the IC valve that was causing some issues with narrowing.

His surgery was fairly textbook and he was back to school and work in about 7 to 9 days.

I hope things go well and the surgery will bring him some relief from the UTIs
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
07-18-2016, 03:31 PM   #5
Join Date: Apr 2016
Location: Florida
Wow!!! You're son is amazing, Clash! How long ago did he have surgery? How many days was he hospitalized for? Any issues with diarrhea? After surgery, did he go back on maintenance med's? And, Clash, how did you get through this? It's soooo difficult when it's your child. I can't tell you how many times I wished I could take this away from him.
07-18-2016, 04:21 PM   #6
Senior Member
malorymug's Avatar
Join Date: May 2014
Location: DFW, Texas

My Support Groups:
Oh Fran! I'm so sorry! It does sound like it's time for surgery. Darn those fistulas! I hope the surgery goes easy and you all do well.

Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk

previous meds:
6mp 50mg
Prednisone 30 mg
07-18-2016, 04:44 PM   #7
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kimmidwife's Avatar
I am so sorry to hear. My daughter has had two surgeries. One was a major resection and the second was a small resection. The thing that really helped on the first one was that they gave her an epidural and kept it in for three days after. It really minimized her pain. She was able to walk with the epidural as well. She was in the hospital five days for that surgery and I think four days for the second. She got an infection the second time right under the skin which was a bit hard because it didn't cause a fever so the doctors couldn't figure it out. I kept saying it was an infection when they finally gave her antibiotics she got better. Sometimes us parents are smarter then them. What can I say?
Please feel free to PM Me with an specific questions.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-18-2016, 04:59 PM   #8
Forum Monitor
Clash's Avatar
C was in hospital for 3 nights. He had his surgery on a Thursday afternoon and wentyvio home on that Sunday.

He was in remicade and methotrexate before surgery. He came off remicade for the surgery and recovery time. When he started back he had developed antibodies so he switched to humira and methotrexate.

His CD became active fairly quickly after surgery. 9 mos after surgery his scopes looked clean but biopsies showed active inflammation at surgical site and throughout colon (his CD was only located around the IC valve and TI before surgery.). His humira schedule was adjusted.

Six months later inflammation was present visually from surgical site and throughout colon as well as granulomas throughout.

He is switching to stelara now. Hopefully he will be starting in the next week or so.

He handled the surgery well. The only issue he had was anesthesia(and pain meds) really just stops his bladder. He begged them not to have the catheter removed because he knew the pain meds had his bladder slowed. They removed it then had to reinsert later that night. He decided to come off the pain pump and take Tylenol so that he could get his bladder going.

I think he would say the most important thing is to walk walk walk as soon after surgery as allowed. He walked the night of the surgery. We made so many laps around the ward I think I lost a couple pounds! Ha!
07-19-2016, 03:45 AM   #9
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Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom

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Hope the surgery and recovery go smoothly.
07-20-2016, 10:20 PM   #10
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
I'm sorry to heAr it, but IT Is in boys are not common, so I see where they're coming from.
J's story:
*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.

Crohn's Disease Forum » Parents of Kids with IBD » And, so it's come.....Surgery.
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