Choice of Infliximab or Surgery?

[jackwhiting]

Been a while since I've posted anything on here, I'm usually one for reading and never really replying. I'm going to try be more active.

I've been given a predicament. I was on methotrexate for 2 years, it worked well at helping me live easier with Crohns however I was never fully in remission. I lost all essence of appetite and felt nauseated permanently, so they took me off.

I had an MRI after a few weeks to show that there was inflammation in my terminal ileum and was advised I could either have surgery or try again with Infliximab (Remicade).

The question here really is which should I go for. I've lost all hope for medication my body either rejects everything or it seems to kick back, and as for the surgery it seems like a leap but with the way I feel - which is terrible - I don't know if this would provide me relief?

Help!!

 

[DJW]

Personally I would go for Remicade before surgery. Hopefully it will bring long term remission.

 

[Clash]

I agree with DJW, since surgery can't cure CD and after surgery you will require a maintenance drug which may end up being a biologic at some point, I would exhaust meds before turning to surgery.

My son went straight to remicade at dx and we later had to add MTX. Even this combo was unable to stave off inflammation and we eventually decided on surgery. After surgery, he was placed back on the biologic to hopefully keep new inflammation at bay.

Good luck with the choices you make and I hope it brings you a long healthy remission!

 

[Jmrogers4]

We were looking at that choice a year ago for my son and but it was more along the lines of let's try this before surgery. Neither Imuran or Methotrexate was quite strong enough and my son had no appetite and did not gain weight for about 3 years (not normal for a pre-teen/teenage boy).
He started remicade last January and it has been a night and day difference. He has the appetite of a normal 15 year old boy now in other words eating us out of house and home. Is growing and gaining weight steadily.
As Clash said we were most likely looking at biologics anyway as maintenance even if we had the surgery so to our and the GI's thinking the longer we can put off surgery while maintaining a good quality of life the better. If we can reduce number or avoid surgery all the better.

 

[jackwhiting]

Hey all.

Thanks for the responses.. Aye this is where I was thinking, but I keep edging more to the surgery myself bit by bit, I have always had pain and been fatigued when on meds/with my crohns. Nothing really has shaking anything. I have had reactions to a few medications and my body not tolerated them, and then the feeling ill anyway. They gave me the option to choose merely because I was not comfortable, I cannot sleep due to pain, I'm fatigue anyway, and it is impacting my work life massively. I don't get paid when I'm off sick, and therefore I am struggling to afford my house every month.

Mind is frazzled!

 

[theOcean]

I'd still go for the Remicade... I've also had issues of my body rejecting or just not reacting to medications for... pretty much everything, so I can underestand why you're hesitant and want to opt for surgery instead. That said, once you get to biologics like Remicade: you have a lot of options!

I was on Remicade originally, but was allergic to it... this is because it's made from mouse protein, so even though it's often more effective for people, it's also easier to develop antibodies to. I'm on Humira now instead, which works amazingly for me! Instead of mouse protein, it's made from a humanized protein so getting a reaction is waaay less likely, but it's administered by injection instead of infusion.

And even if those fail, there are still others. I'm personally on a combo of Humira/6mp now and I'm happily in remission with no side-effects!

 

[kristihelene]

I've had several resections, and while of course I never *want* surgery, sometimes you just have a gut feeling that it's the best option. As others have said, I am still on two biologics even after the resections (Remicade and Methotrexate) but the surgeries took me from a place of pure Hell to a place of "ok, I can deal with this from here". I know surgery is drastic, but if it feels right, go for it. I am glad I had mine. Recovery is long, and painful, but then you kind of start fresh. So I find my meds seem to be more effective and I feel better!

 

[jackwhiting]

Hey Thanks,

Yeah Kristi I have that feeling inside, at the current moment I'm on absolutely no medications until I move time and get to go to the new hospital for consultation. I've been left with the choice between - so am putting up with the Christmas feeling pure rubbish!

I understand I'll have to be on medication still, however, my tethers are at an end and I cannot work properly or make a living which I enjoy massively.