Those on Remi: Red34, Judy2 (If I remember right), etc...

Tonight I've seen a couple different people writing how it seems like a person should have surgery over taking the risks that these biologic drugs have. What do you think of that?

**EDIT: I think I asked this question wrong due to being a bit worn out tonight. I guess I am personally trying to distinguish where the line falls between surgery and medicines with risks, and how anyone on Remicade has handled this mentally. If I am flaring I am non-fuctional and in extreme pain, so obviously something needs to help me get better. My doctor led me to Remicade, not surgery. Why do you think that is that a doctor suggests a biologic over surgery?

Surgery is not without risks. Even a good outcome is not 'normal'. Some people have surgery and then wind up on biologics anyway for extra intestinal manifestations.

Sorry if this seemed aimed at you, Path. That wasn't my intent at all. You know I am in somewhat a state of flux with things, and so I try to hear everything out so that I feel like I've considered things from every angle.

You're a great asset to this board, which is why I've been asking you questions in the other thread.

GI's are medical doctors. By inclination, training and experience they think first of all the medical treatments. Surgeons are the opposite.

In my case, there were two factors: I saw the two-year course of surgery and recovery, and just didn't feel ready for that at the time. Second, surgery is permanent and leaves me many less options. I guess I'm conservative enough to want to use all the medical options first. I'd heard great stories of Remicade, and my PCP had patients who had done really well on it.

I checked side effects, incidences, etc. and felt the miniscule risk of lymphoma, etc. with Remi were acceptable to me. Fortunately, I've done very well on it. If it fails me, I'll still try all the other medical options before opting for elective surgery.

Hope that helps you. This is a very personal decision, and no one else can tell you what's best. Only you know your own life and body. Good luck, and I hope whichever way you go works well for you.

I'm on remicade right now... Getting my 3rd infusion on Monday.

So far it doesn't seem to be doing much for me. I'm hoping I start improving after my 3rs infusion, but if not I'm more than ready to go for surgery and getting my life back.

I'm also curious about what will happen in the next 5 to 10 years. Who knows what they will find. I'd like to have the option of getting better treatments later they come out, and remicade would be just a way of buying time. But like I said, I'm ready to have my life back now, and if that means surgery then I'm ready for it, now....I'm tired of watching my life wasting away with this disease.

Remi is awesome.... when it works...

When it doesn't or when you react to it it can be rough. I did amazing for 2 years or actually 1 and 6 months, then the muscle pains hit HARD... then the butterfly facial rash (lupus) set in and a few other things and it went downhill from there fast.

Now that I've been off it for some time - If I was facing surgery or limited option I'd still choose to try Remy or try any of the others one more time to buy time.


And that's really the bottom line... biologics for IBD = buying time

So it's a personal choice on how YOU want to approach and treat your disease really.

The combo of Remicade and Imuran I take is arguably 'the most dangerous'. Side effects weren't even on my radar anymore when I started this combo, along with 60 mg of Prednisone and HC enemas. I had just been quit on by my second GI and sent to an IBD specialist. I was doing everything I could to avoid surgery.

Today was my first cancelled surgery appointment. I still don't want surgery. It is worse now that I feel so good. My doctor tells me that surgery is unavoidable because of my strictures. If she had a medicine with a questionable safety profile that would help them, I would take it now, no question.

I've only had surgery once, and it's not something I'd undertake lightly. I had surgery on my calves, which took two hours and was uninvasive enough that I was able to bear weight within a few hours of surgery.

The recovery was exhausting. I was stuck in bed for a while and managed to lose 10 lbs just from my body trying to heal. It took about 6 months and a lot of PT until I could get back to somewhat normal activity, and even 3 years later, I sometimes get bad swelling after being on my feet all day.

I can't even imagine how much more ridiculous recovery is after colectomy, and it introduces its own set of complications and life-changes. Reasons to avoid surgery aren't just, "You won't have a colon anymore! You'll have to have an ostomy bag for a while!" Curing UC surgically isn't identical to remission.

I think that surgery is definitely better than being incapacitated by UC, but it's a permanent and drastic change to your body. I think that most doctors and patients try to go to surgery as a last resort, since biologics can often put people in remission.

The way I see it, I'd rather be on Remi than have surgery, but if nothing worked to reduce my symptoms (and I was bedridden when my flare was bad), surgery would be a necessity.

I think you really need to get some help. You sound really stressed and depressed, and you've been getting morosely philosophical about your health and your future for a long time now.

Normal isn't something I always value, but it is true that you are not the same as a person with complete anatomy.

Surgery is a very different experience for those who are feeling ok and functioning pre-op than it is for those who have been incapacitated by disease. I will not feel the relief of having a horribly diseased organ removed. Instead of getting back life, I'm trying to figure out when it will be ok to schedule a major interruption. Instead of looking forward to getting a job, I'm stressed about losing mine.