Firstly, thank-you all for all the posts... they are an invaluable resource!
I've been dealing with my fourth flare up in two years, and have now gone through 5-ASA's and azathioprine. Trying to keep my chin up, but this sucks! I feel like I'm missing out on so much in life. Anyway, enough pity-partying!
I'm wondering if anyone has thoughts on the long-term benefits of remicade (aka infliximab) v.s. a colectomy? I don't like the permanence of surgery, but at the same time, I've only heard good things about it. On the other hand, I'm not so sure about being on such a major medication for the rest of my life, and being immune-suppressed etc. either. Do people ever stop taking remicade gradually once in remission?
In my opinion as a patient who has tried both options and a future health care provider, always try to least invasive method first. If there is a chance Remicade will get you in remission, do not have a colectomy. The potential side effects of Remicade are very scary, but they only occur in a small number of people. And you have to keep in mind that death is always a risk with any major surgery, colectomy included. The recovery time is long. I had mine over a year ago and I've still got a ways to go.
If Remicade is a viable option for you, please consider it. I is a miracle for some people. I was on it for three years but I just wasn't getting good enough results. Let me know if I can be of furthe assistance.
Thanks for the reply. I had spoken later to a GI, and I think I'll try remicade. Although the side effects are scary! I was also worried about immune suppression, because I'll be (hopefully) starting a nursing program in september, but she said that it's not a HUGE problem (just to be careful etc).
Surgery does seem drastic, but at times tempting! But you're right... least invasive first.
I'm actually in nursing school right now. I'm not on Remicade anymore but I'm on something called Tysabri, which also suppresses the immune system. So far, I'm fine. I have a lot of colds and sinus infections, and they seem to last forever, but it hasn't interfered with my schooling. Just wash your hands a lot.
Sorry about all the typos in the previous response. I was on my phone.
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