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Surgery vs. Remicade - So many questions...

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Crohn's Disease
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Posted 3/20/2008 12:33 AM (GMT 0)
Hi everyone!  I am relatively new to the post but I cannot thank you enough for all your threads and posts.  I have really learned a lot, in a very short time, from this site. 

I was diagnosed with Crohn's two years ago.  I have been lucky to have had only two flare ups since that time.  However, this current flare up has been relentless and has had me out of work for almost three months.  I have been on Pentassa, which gave me horrible cramping, Prednisone which just provided horrible hot flashes and headaches, Enticort that left me virtually sleepless, and now 6mp.

After telling my GI that I have had it with the "Let's try this drug and see what happens" approach, and that I wanted to pursue the surgery route, he scheduled me for a CT enterography and an appointment with a surgeon.  During my consult with the surgeon, who had the results of the CT, he told me that the Crohn's had significantly progressed in the last two years (since my last CT) and that the left half of my colon would have to be removed.  He recommended that I try Remicade instead of surgery but understands my frustration and desire for surgery.  He suggested talking to my GI again (who is on vacation).

SO, here are my questions:

I have been told that 2/3 of Crohn's patients, who elect surgery, have it recur.  Does that seem accurate?  I have heard a lot of success stories but have read a lot of reoccurance threads here online.

Has anyone had that much of their colon removed at once?  I'm guessing, 'yes', but the thought of it scares the beejeezus out of me. 

Does insurance pay for Remicaid if I have just started 6mp?? 

Does Remicaid work, and if so, when do you start feeling the benefits? 

Also, if I am on 6mp and Remicaid, then the results are not good and we decide surgery is best, wouldn't those drugs compromise my immune system and surgery would have to wait??

I think that is it for now.  I really appreciate any feedback you could provide.  Thank you!

 

Posted 3/20/2008 3:23 AM (GMT 0)
Hi Zoey,

I really recommend trying the remicade first surgery should always be the last option. Your surgeon is even saying give remicade a chance first. Remicade has shown in many cases to knock crohn's into remission and allow your colon to heal. Crohn's is a funny disease it can crop up anywhere in your digestive tract so by sectioning out a portion of your colon will not rid yourself of the disease. You will also be at a higher risk of having crohn's attack the area where your colon resection occurred. I did not respond to remicade during my last flare that was so extreme they feared my colon would rupture in several places. There was no other choice but to remove my entire colon when I was 32. Since I have crohn's I cannot have a jpouch so I live with an ostomy. Recently they removed my rectum so I am now as anatomically correct as a Barbie doll behind! Now I haven't had any problems since my colectomy but it can always attack somewhere else in my digestive tract. What I had done is the extreme and they try to avoid this with crohn's patients.

In regard to insurance and remicade....All carriers are different so I would call your insurance company to find out about your individual coverage.
Posted 3/20/2008 11:54 AM (GMT 0)
The answer to your intial question is that yes, most patients who have surgery ultimnately have a recurrence elsewhere in the GI tract. There's no sure way to predict when -- I have seen posts from people who had no problems for 20 years post-op, and some from those who ahd a new area of inflammation develop within months of surgery to remove the old one. Overall I would guess the recurrence rate at better than 90% . . . surgery alone is very rarely a "cure." However, it does remove damaged or strictured areas and take away the immediate complication of the disease, and it may take a number of years for the status of the newly involved area to reach that point. As in so many other areas of thise disease, there's just no way to extrapolate your own likely experience from someone else's. On remicade, there are many people who have attained long term remission from it, but others who developed allergic reactions to it or otherwise failed treatment. And a final factor in your case, with so much damage to the colon, is that that damage increases your chances of developing colon cancer there, which the surgery would eliminate as a future complication.

Posted 3/20/2008 12:46 PM (GMT 0)
I had surgery back in April of 07 due to blockages. I had 3 blockages in a couple months time I did try remicade but it did not work. I am doing better right now but i can tell at times that the disease is still there. They removed 12 inches of the lower part of the small intestine. It is a hard decision to make. I was just tired of the blockages so i went to my gi and told him i wanted surgery. I went to the surgeon of his choice and he told me i was not ready for surgery. I left there crying and a few days later he called me on the phone and told me that his friend at Barnes Jewish in St. Louis looked over my tests and said i need surgery right away so I guess it all depends on how good they are. anyway good luck with your dicision i know it is a tough one to make. Barb
Posted 3/20/2008 8:01 PM (GMT 0)

I have been on remicade and it worked amazingly the first 2 times. However, the system gets used to it, and I ended up right where I started, with the worst flare ups ever. I am now on Humira. Anyone else on it? But my advice is definitely try remicade before surgery and see how you do. Everybody's body is different, you never know.... (By the way, has anyone heard of the "HUMAN PROBIOTIC INFUSION" ? Does that work for crohn's???????)

Posted 3/20/2008 10:47 PM (GMT 0)

Zoey - I'd definitely try Remicade before surgery.  My Crohn's is (was) similar to yours in that my entire left colon was affected.  Then I was on Remicade through most of 2003 and went into remission which I was able to maintain with just Imuran.  After my daughter was born in May 2005, I had a flare up which ended up with me having a resection to remove a portion of my colon which was almost blocked.  The surgeon said that was the only place I had active Crohn's.  A few months after surgery, I had a follow up colonoscopy and had active Crohn's throughout my entire colon.  So now I'm on Humira.  While I needed to have the resection because my colon was almost blocked, so it was either going to completely block or rupture, it's weird that now after that really diseased part was removed that my Crohn's came back so quickly and spread so much.

Of course not everyone has that happen to them - I personally know 2 people in real life who had surgery to remove part of their intestine and have had no problems since then.  It just didn't work that way for me. 

Remicade was a really good drug for me - put me into remission very, very quickly.  I did have reactions to it which I was premedicated for, but then after being off it for so long, my doctor said he didn't want me  back on it because my reactions would be more severe, so he put me on Humira.  That's also been a great drug for me and I'm only on that currently (no Imuran).

My insurance paid for Remicade and Imuran concurrently with no problems.  I wasn't on Remicade when I had surgery but was on Imuran (same as 6-MP) before, during and after with no problems. 

I do understand just wanting to have surgery and get it over with - I told my husband that if Remicade didn't work for me I'd be ready to just have my colon out and be done with it.  Now of course that I know that apparently my Crohn's just spreads around and wreaks havoc wherever it can tongue I don't think that's the answer for me anymore.

Good luck with your decision!

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