Share Facebook
Crohn's Disease Forum » Surgery » Looking for some helpful input


04-18-2016, 08:43 PM   #1
Jj13772016
 
Join Date: Apr 2016
Looking for some helpful input

I'm trying to learn more about anyones experience with surgery while on Remicade. I've had Crohns for 31 years and It was an awful experience for a 7 year old. My Crohns has been very aggressive but has always responded well to medications.

I've been on 400MG of Remicade since 2002 and right now I'm getting it every 8 weeks. My doctors recommended a resection surgery to correct a narrowing in my small intestines. All my symptoms are typical of an intestinal blockage and this area is very scarred and now inflamed. I hope that the Remicade is still working and can keep my Crohns under control.

Has anyone else had surgery after being on Remicade for a long time? I'm worried about the Crohns coming back and me being in the same or worse situation as I'm in right now.

Last edited by Jj13772016; 04-18-2016 at 09:24 PM.
04-18-2016, 08:59 PM   #2
Clash
Forum Monitor
 
Clash's Avatar
My son had been on remicade but not near as long as you when he required a small bowel resection. The area of active disease was chronic and wasn't fully responding to remicade. It was some scar tissue but also inflammation causing the narrowing. At the time he was on methotrexate and remicade.

He had to come off the remicade for the surgery and when he started back his body had created antibodies. The antibodies level was really high so he had to move on from remicade. He was put on humira along with methotrexate and a scope 6 months after surgery 3 months after starting humira looked pristine but biopsies showed inflammation at the cellular level. Another scope 6 months later showed visual inflammation so we went to weekly humira. He'll be scoped again the first part of June.

He's been asymptomatic the entire time so it's really hard to know when things are awry inside.
__________________
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
04-18-2016, 10:05 PM   #3
Jj13772016
 
Join Date: Apr 2016
My son had been on remicade but not near as long as you when he required a small bowel resection. The area of active disease was chronic and wasn't fully responding to remicade. It was some scar tissue but also inflammation causing the narrowing. At the time he was on methotrexate and remicade.

He had to come off the remicade for the surgery and when he started back his body had created antibodies. The antibodies level was really high so he had to move on from remicade. He was put on humira along with methotrexate and a scope 6 months after surgery 3 months after starting humira looked pristine but biopsies showed inflammation at the cellular level. Another scope 6 months later showed visual inflammation so we went to weekly humira. He'll be scoped again the first part of June.

He's been asymptomatic the entire time so it's really hard to know when things are awry inside.
I hope things get better for your son it sounds promising!

How long did he have to be off Remicade after the Surgery? How was recovery for him?
04-19-2016, 05:27 AM   #4
Clash
Forum Monitor
 
Clash's Avatar
He was off Remicade a month before surgery and 8 weeks after maybe? It's been awhile so I'm not certain.

Surgery went well for him. His surgery was on a Thursday and he was back at school/part time job the following Thursday. His surgery was an ileocecectomy. If you click the underlined word in the previous sentence it will give you an explanation of that surgery.

The most important thing was to start walking as soon as possible. They had him up the evening of the surgery and he walked his floor often times a day.

The most frustrating part for him was that you are not allowed to lift more than 10 lbs for 6 weeks after surgery.
Reply

Crohn's Disease Forum » Surgery » Looking for some helpful input
Thread Tools


All times are GMT -5. The time now is 07:40 PM.
Copyright 2006-2017 Crohnsforum.com