Remicade or Surgery?

It's a tough choice and I think only you can make the decision with some careful thought and discussion with your GI. I had jpouch surgery 9 years ago. This was before Remicade was an option and the last drug for UC was 6MP. I am so grateful I ended my misery there; I know I would have taken the Remicade if offered because I would have done anything to avoid surgery. Now I look at the choice differently. I'm glad my options ran out at 6MP. The thought of being "infused" with a drug on a schedule freaks me out. Like I said, I would have done it then because I knew UC, the devil, and I didn't know what my life would be like post UC. Life has been far better post UC then I could have imagined back in 2000. It's never easy to make the choice; one can only weigh the pros and cons and then make the choice. There are many people on this board who have long term remission from Remicade and speak highly of it.

Sue

I came to within an inch of my life on Imuran and was very hesitant to try Remicade, but it was a really bad time for me to have major surgery, so I did try the Remi. It worked well and I tolerated well for quite awhile, but then it started to lose it's effectiveness. It did allow me to get off the Prednisone and get healthier going into surgery though.

If you are ready for surgery mentally now, there's no law that says you have to try Remicade first. It is a personal decision. I am in between the first two surgeries now, and it is a very taxing process. The first month after the first surgery is very difficult, but then I started to feel a lot better. I could tell a toxic organ was out of my body. The main problem now is dealing with the temporary ileostomy. A loop ileostomy is harder to handle than a permanent one because the stoma tends to open low and closer to the skin. Keeping a good seal on the bag is hard and leaks and skin problems are common -- but it IS temporary. My first surgery was Jan 12 and I am looking forward to take down on April 6. Then I am told I'll have a period of adaptation to the j-pouch that will last up to a year, but with a steep curve within the first few weeks.

I'd suggest a consultation with a surgeon to learn your options. You may want to go on Remicade just to get off the Prednisone and be off of it for awhile. My surgeon told me the success rate of the surgery is much greater when Prednisone is out of the equation.

I am glad I tried everything before I had the surgery because when things got bad at least I know I really had no other choice.

Meesh

i went in to the GI in july, 2006 and said, i want surgery, and he said, oh no try remicade, its great it will be wonderful.
So against my better judgement, i tried it and it worked almost immediately,and for about 4 or 5 months it was great,but i was still waiting on it to fail. And then, it did. So by Feb of 2007 i was in worse shape than before, and back on pred, and still on the remi and nothing was helping. So i went back to the GI and i said, either you find someone to take this thing out (my colon) or i will! And i was serious, i was at the point where i would have just cut myself open and taken it out!
So i got a surgeon and had surgery on April 17th, 2007, my new birthday!

Anyway, moral of my story, remicade just wasted my time, i could have been healthy for 9 months longer, 9months of my sons life i wouldnt have had to miss.
So if you are ready for surgery and thats your gut (no pun intended) feeling, go for what YOU think you should do. Not what your GI is pushing you to do.

From another point of view; I've been on Remi for about five years and am doing fine. So it's all in your decision, and what works for your body. I have had some glitches, but they are few and far between, and the last few weeks have been living heck stress wise for me, but I'm still hanging in there. Good luck with your decision; the folks who posted before me are wise and knowledgeable and have good luck with their surgeries.

Just head over to the ostomy board and ask us your "bag" questions, but i assure you its nothing to be scared of! its really very convenient!

Nothing else has kept me in remission (even though I do have some urgency still) so overall I am so pleased with Remicade! It has been my miracle drug and I have my life back!

I wish you all the best of luck in your journey...

While for many people surgery ended up being the best possible choice, so many other things worked for so many other people. I view surgery as a last resort. Its beginning to become more clear thats prolly what I'm going to end up doing, but If theres a 1% chance that theres something out there that I can try to return me to the way I was before I'm gonna exhaust every possible option because theres no going back from surgery. From what I've heard most people are very happy with the results of the surgery, so think about it and best of luck in your decision.

hey! I know its tough, but why dont you at least try the Specific Carbohydrate diet? Read the book by Gotschall and follow the guidlines to the T. The intro diet really helped me.

Also helminthic therapy may help you too. I tried it and it worked swimmingly for a year. Perhaps it still has good effect, but I do have on going flare ups; and have to take entrecort enemas still:

I really do have the impression that SCD works; but need more time to be sure. I noticed pretty good results after 2 or 3 weeks

I decided not to use Remicade and to opt for surgery. Imuran really messed with my liver - nasty stuff - and I have neurological problems so did not want the extra risk with Remicade - although even if I didn't I dont think I would have tried it.

I am 2 months after part 1 of JPouch durgery and am healthier than I have been in YEARS! No regreats here - even with the ileostomy!

Good luck!