Infliximab vs surgery?

[Marx]

So steroids aren't working for me anymore and the next step which I will discuss with my GI doc tomorrow will I presume be infliximab or surgery as we've flirted with the idea of those when I was last admitted into hospital.

I'm leaning towards having an operation as I'd rather get it over and done with and live again for how ever long it may be. I don't really like the sound of having injections every 8 weeks and I've also heard that biologics can cause more risk when having any future surgeries.

What do you guys think?

 

[Grumbletum]

Hi Marx
I was wondering where you'd heard that Infliximab might cos problems with surgery in the future cos it's the first time that I've heard that.
Last year I was referred by my GI at one hospital to a surgeon at another as he thought I would need a resection. The second hospital called me in for a pre-op, but by the time I got to see the surgeon, my symptoms had improved a fair bit and the surgeon actually advised me to try to avoid surgery for as long as I could because of the potential problems with it. I was referred to a GI and they started me on Infliximab during that stay.
I had three infusions, then a clear colonoscopy so they declared remission and stopped the Infliximab. I believe that is standard procedure in the UK at the moment.
I felt great for about 6 months, but then started having symptoms again and ended up having the surgery last month.
Do you have any particular complications with your Crohn's? With me it was a fistula that they thought might heal on Infliximab. I do understand your dilemma and I'm not sure how I would have felt on being on it for longer. I did feel at the time that three infusions might not be enough to get into a lasting remission which has proved the case.

 

[highlandsrock]

Hello Marx

I first had to make the drugs vs. surgery decision in 1999. I chose Azathioprine and that worked for many years. Eventually I stopped taking it because of suspected side effects. I then started to get loops and fistulas so was given a last "last chance" of Infliximab as it was supposed to be good with fistulas. It didn't work for me so I had surgery.

Both times, when offered new drugs, I chose that option in preference to surgery and didn't let the side effects worry me. We all react in different ways so the side effects may pass you by. Not a very scientific approach but my previous experience of surgery was in 1979 when hospitals and the NHS were fairly grim. The thought of hospital and going into the unknown was scary.

Having now been through operations in a modern NHS hospital I have lost any fears that I had. Would I have had surgery any sooner? I don't think so. Would I recommend surgery? It really is down to your own personal circumstances and approach. The only thing I would advise is that if surgery is looking like the only option do not to put it off so long that it becomes an emergency. Elective surgery is a far better bet.

Regards, Nigel

 

[Marx]

Hi guys,

Thank you for your accounts and advise.

It was a video on youtube. A doctor in America said when on biologics, there are more chances of infections during surgery and also the need for a second surgery sooner. Which makes sense really as biologics affect your immune system.

So I went and saw my doc today, and he suggested I go on infliximab. Having spoken to him and the nurse, they convinced me. However, now I'm having second thoughts. Firstly, it's not something I want to be doing long term whilst on the steroids and aza. Secondly, the potential risks are a big put off. And although a lot of people live healthily on infliximab, I think I'd rather go through with the surgery. Whenever I mentioned the word surgery to my doc and nurse they were very dismissive. Anyway, I'm gonna call my nurse tomorrow and tell her I don't want to go through with this.

 

[nikki]

HI,
I had the same dilema 5 months ago. Why are you deciding towards the surgery instead of infliximab?
I choose the infliximab over the surgery, in my opinion the longer you can go without surgery the better! Infliximab does lower the immune system but as does other drugs. I also still take aza whilst having my infusions every 8 weeks. You need to be sure you are 100% on any decision before going ahead, i hope you figure what you want very soon

 

[Marx]

Hi Nikki,

The reason why I'm opting for surgery is because with surgery, i'll only be on the aza afterwards. The less medication the better. Also, being on aza and infliximab really kills your immune system and can increase infections with surgery. Not to mention potential cancer risks. Further, I don't like the sound of being in and out of hospital getting an infusion every 8 weeks, I'd rather just do surgery and be done with it.

With infliximab, I understand it prevents the inflammation. But with surgery, the infected part is removed therefore I'll feel a whole lot better.

That's just my thoughts at the moment. Have to try and convince my doc now.

 

[highlandsrock]

I saw one of my consultants today. We had a wide ranging discussion about Crohn's and its side effects. At one point she said that the longer you can put off having surgery the better as once you've had surgery it opens up a new set of complications. So I feel that, for me, it was the right decision to delay surgery for as long as I did by trying new medications.

 

[Marx]

Hmmm... That is true. But, I guess it's the same for all these medications as well. They too bring about other effects on you. Either way, it's a decision I have to make in the next week or so.