Posted 5/2/2012 4:53 AM (GMT 0)
Idk what the leaking means, I'm so sorry to hear you're going thru all of this!! I've never had an obstruction or a colon resection though either. I can tell you that Remicade worked miracles on my crohns, my first flare was so bad that I lost 30lbs and was very close to being put on the food bad iv thing, I was at the point where functioning was very difficult. The crohns presented in three separate places, and I was told it usually only presents in one. I believe the doc is pushing you to go on Remicade b/c he must see that Crohns is still affecting your daily life, and he knows that it will help.
After my first Remicade treatment, I started seeing improvement, sometimes it takes a couple of infusions but, I immediately started to be able to expand my diet from toast, bananas, broth, pretzels to more. Also, a perk of the infusions is that you will meet others with crohns or other issues requiring remicade, and I really liked that part. I highly recommend it.
I understand why you are hesitant and upset, I was too even though I was in desperate need of drastic help. No offense, but it sounds like you are in need of drastic help too, and biologic agents do provide that kind of help.
Yes there are dangers, I, unfortunately, am the posterchild of what can go wrong on a biologic agent, the one in a million where all this occurs. And please understand my experience has been truly unusual. 1. It turned out that I had a tumor we didnt know about when I started Remicade, which makes cancer grow really fast, so it wasnt long before my tumor was the size of a golfball and I needed an immediate resection - the surgery was successful tho, no chemo or radiation needed. And I returned to the infusions after b/c my crohns came back due to all the narcotics I needed for the surgery. 2. I had a reaction during an infusion, my chest became tight and it was hard to breathe. I needed oxygen and benadryl, but I was able to continue infusions and never had another reaction. Even though it sounds like it would be scary, but it wasnt as bad as you would think b/c the nurse reacted very quickly - there is at least one in the room with you at all times. 3. Then I developed drug-induced lupus and had to switch to Humira. (I dont know where you are located, but if its in PA or MD area, I'd be happy to refer you to the location I received my infusions, the nurse there goes way above and beyond her job, she's amazing)
I'm telling you all this hoping you dont get more freaked out b/c of what happened to me but realize that even though all that happened, I still recommend Remicade because it worked really well for the Crohns. Its so ridiculously rare that any of that would happen, much less all three, so please take my personal experience with a grain of salt. I wasnt afraid to be switched to Humira at all. I hope the best for you, it sounds like your doctor does to and thats why Remicade IS a good option. Please message me or post back here with what you decide, I'd love to hear how you're doing. :)