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Looking for some helpful input

J

Jj13772016

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.
 
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Clash

Clash

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.
 
J

Jj13772016

Clash said:
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.
Click to expand...
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?
 
Clash

Clash

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.
 
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