Did you start meds soon after your surgery?

[Domsmom]

I am almost 4 weeks post-surgery. I saw my GI and the surgeon this week for follow up. My GI wants me to start Remicade as soon as possible. My surgeon says he believes I am Crohn's free at the moment. They both say there is a 90% chance of recurrence. I say there is a 10% chance it's gone forever, but if I go on Remicade, I may never know. I came to an agreement with my GI that I will come back in 6 months for a colonoscopy and if there is active disease, I will start Remicade then. I don't want it to come back. I just went through the most difficult time of my life...including 7 weeks in hospital with 3 young children at home. I also don't want to be on meds forever if I don't have to.

What did/would you do?

 

[nogutsnoglory]

Unfortunately if it's an aggressive case and they say 90% chance I'm afraid my answer is its necessary. I started a month after surgery. This was a few surgeries ago but after some initial healing you should be ready.

 

[Daisy123]

I am almost 4 weeks post-surgery. I saw my GI and the surgeon this week for follow up. My GI wants me to start Remicade as soon as possible. My surgeon says he believes I am Crohn's free at the moment. They both say there is a 90% chance of recurrence. I say there is a 10% chance it's gone forever, but if I go on Remicade, I may never know. I came to an agreement with my GI that I will come back in 6 months for a colonoscopy and if there is active disease, I will start Remicade then. I don't want it to come back. I just went through the most difficult time of my life...including 7 weeks in hospital with 3 young children at home. I also don't want to be on meds forever if I don't have to.

What did/would you do?

I am probably going to have another operation and I have done a great deal f research. Following surgery, Remicade gives you a 75% chance of keeping in remission. I had a resection 3 years ago, and am facing another op and a permanent ileostomy. I would say have the Remicade, don't wait until it comes back.

 

[Domsmom]

I am probably going to have another operation and I have done a great deal f research. Following surgery, Remicade gives you a 75% chance of keeping in remission. I had a resection 3 years ago, and am facing another op and a permanent ileostomy. I would say have the Remicade, don't wait until it comes back.

Did you go on anything following your surgery? How long did it take for your symptoms to reappear?

 

[Daisy123]

Did you go on anything following your surgery? How long did it take for your symptoms to reappear?

Just Pentsa and Aziathropine, which usually work. It took about a year . I have stricturing crohns, and so I have strictured again.

 

[Domsmom]

I only had a stricture b/c of scar tissue at the ileum. Pentasa never worked for me and aza gave me pancreatitis. The thing that worries me the most is if Remicade will even work and it's side effects.

 

[Daisy123]

I only had a stricture b/c of scar tissue at the ileum. Pentasa never worked for me and aza gave me pancreatitis. The thing that worries me the most is if Remicade will even work and it's side effects.

I think it is worth giving it Remicade a go, and seeing how you get on.

 

[DustyKat]

Sarah wasn’t diagnosed until she had surgery so started about 3 weeks post op after the GP made contact with a GI. She was commenced on Imuran and remains on it 8 years later.

Matt started Imuarn when diagnosed but developed complications within 3 weeks that required surgery. He remained on the Imuran pre op and has stayed on it post op. That was 3.5 years ago.

They are both in remission.

I personally would take the advice of the GI over the surgeon. Surgeons are good at what they do, cut and close, but they are not doctors of chronic disease. I personally believe in taking the prophylactic approach, the disease is there lurking and waiting for the right time to strike again, so much as you would for a raft of other diseases…asthma, diabetes, heart disease and so on….the medication is there to keep you in a stable disease free state.

Good luck with whatever you decide! :ghug:

Dusty. xxx

 

[Domsmom]

Thank you all! I am still undecided. Remicade is so expensive and time consuming. There is a big part of me that really wants to know if I'm part of the 10%. In also worried Remicade won't work...since it seems to be my last medical option.