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Remicade or Surgery?

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Ulcerative Colitis
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Posted 3/9/2010 3:17 PM (GMT 0)

I see my G.I. Friday and the next move is Remicade infusions.  I am gun shy as before (with another G.I.) I went on 6mp and came within an inch of my life of being sent to ER for big time pancreatitis.  After doing some serious research on Remicade as well as J-Pouch surgery, I cannot find any reason as to not go forward with surgery.  If remicade works, there will also be serious potential rammifications of long term usage.  The Doc says I have to completely come off of Preds, which I understand......but it seems like I'm just trading in one drug problem for another.

Can anyone offer any comments on this debate?  Cut to the chase rather than use Remicade EVEN if it does clear up the UC problems or try the remicade?  Ultimately, it is my decision, but I'd like to know from people who have been in this situation before.

UC for 2 years

Currently on 6 mgs of prednisone daily with disease under control

Posted 3/9/2010 3:29 PM (GMT 0)
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
Posted 3/9/2010 3:29 PM (GMT 0)
I chose to try the Remicade because I really thought it might work and I didn't want to have surgery and then question that I didn't do something that could have prevented it. I can understand being hesitant to be on a drug like that long-term, though...I was, too. It didn't work for me so I didn't end up having to worry about that. It seems that it fails at some point for a lot of people, too, so I wonder if it's really just delaying the inevitable surgery.
Posted 3/9/2010 3:46 PM (GMT 0)
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
Posted 3/9/2010 4:13 PM (GMT 0)
I personally would try Remicade before having surgery, but everyone has to make his or her own choice regarding that. Good luck!
Posted 3/9/2010 5:16 PM (GMT 0)
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.
Posted 3/9/2010 5:17 PM (GMT 0)
     I tried Remicade.  It failed after the 3rd infusion.  I had my 4th infusion three weeks ago (one week earlier than scheduled).  Still flaring and looking into surgery.
Posted 3/9/2010 5:44 PM (GMT 0)
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.
Posted 3/9/2010 10:12 PM (GMT 0)
Unfortunately I have just been told today that I am at the crossroads.. its either Remicade or Humira (whichever they decide) and if that fails then its surgery, apparently I have run out of options.
Surgery scares the HELL out of me (And blokes aren't supposed to be like that!..lol) Its the "thing" that for years I said I wasn't going to have. Suppose its the whole bag thing, Ive no idea whats involved.. maybe if anybody knows of some useful links to give me some sort of idea??
They said today (at the hospital) that I will be referred and they may or may not offer me the Humira??? - Whats that all about?!.. to be honest I was still trying to get my head round the fact that I have run out of options! - So I was in a daze and didnt ask, just agreed and couldnt wait to get out of the place...

Sorry for the LOOONG post, its been a loong day :(



Thanks
Posted 3/10/2010 12:47 AM (GMT 0)
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!
Posted 3/10/2010 1:43 AM (GMT 0)
surgery! well, I am a little jaded, but to have this crap run your life forever and be dependent on all of these medications, forget about it! I am seeing a surgeon this friday and hopefully will be scheduling surgery ASAP. I have been on Humira for about 5 months and it has kept me at bay for a bit, but the symptoms are wonderfully shining again. Like the others say, it is up to you and how you feel and how you want to live the rest of your life. To me that is the question ... how you want to live your life. The way things are now, it is not living, it is succumbing to this crap (literally). I wish you nothing but the best. I am at the point where I would wear a garbage bag around my waist, I don't care, as long as I don't have that urge or insane ab pain anymore. Toodles ;)
Posted 3/12/2010 1:31 AM (GMT 0)
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... :-)
Posted 3/12/2010 3:05 AM (GMT 0)
if not for remicade i would've had surgery in early 2005 instead of late 2009. it eventually stopped doing the job, obviously, but i had a long remission thanks to it and 6-MP. pooping once a day... good times. side effects i had from the remicade included dry skin & occasional rashes, but they weren't serious and were mere annoyances.

BUT i also had a successful 2-step j-pouch surgery with no complications. so, being someone who went through both remicade & surgery, all i can say is you most likely have nothing to be afraid of no matter what path you choose. :-) good luck
Posted 3/12/2010 9:14 AM (GMT 0)
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.
Posted 3/12/2010 10:11 AM (GMT 0)
I would choose surgery. I can't see taking medicines such as steroids or immunity suppressants unless they either fix the problem or buy some time to find something that will fix the problem or I have no choice, because I have something that can't be fixed with surgery.

I took prednisone once. It gave me the time I needed to find alternative treatments that worked. I'll never take it again for any future flares. If I had ashma or chron's or some other disease in which surgery wouldn't cure the disease, then I wouldn't have much of a choice. But as long as I have a choice, I'd choose surgery. Then again, I'd make pretty darn sure that I had UC and not Chron's colitis or some other form of colitis before getting surgery.
Posted 3/12/2010 12:50 PM (GMT 0)
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
Posted 3/13/2010 9:39 PM (GMT 0)
I'm on remi and it is working okay.  I have side effects form it.  I know I will need surgery too.  It is just my youngest kid is 20 months and I was waiting until she is alittle older.  I test on wed. to see if I'm forming antibodies against the remi.  It has worked okay for me.  I went from 10-15 times a day to 4-6 but they say that is still to much.  I still have joint pain and am exhausted.  So they think I still have active diesese.  I have a scope on the 26th.  I don't want surgery either and I've been told I will need it.  But alot of people seem to be better with it.  I hope i'm one of them.  UC controls your life.  The recovery and the bag scare me.  So does the remi and the side effects.  Good luck in you decision.
Posted 3/14/2010 6:57 AM (GMT 0)
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!
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