Remicade or another Surgery??

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aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 2/27/2010 7:52 AM (GMT -7)   
Ugh!  This is what I'm facing.  I still have a leak from my first resection in Jun 09.  I've been trying conservative treatment since the surgery to heal the area, but nothing is working.  I have an appointment on Monday to see my GI and my surgeon together--they called the meeting.  Basically, my option is to try remicade or have another surgery.  I feel like if I use my Remicade option now--there won't be anything left for me later.  I'm only 38.  Right now, I'm on Flagy, Entocort, and Imuran.  I've had two JP drains, 3 PICC lines for IV antibiotics and have been on Flagyl and Levaquin off and on since my resection.  I just don't know what option to choose.  Any advice from my fellow crohnnies??
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 2/27/2010 12:17 PM (GMT -7)   
I'd take Remicade hands down, but I had a GREAT exp on Remicade and lived symptom free for over 2 years. It was an amazing drug. Healed my fistulas as well.

Remicade is not a last resort, IMO. You haven't taken Humira or Cimzia yet and there are other drugs in the works that are similar. For me, surgery is last resort. I find it more invasive, harder to heal from, and harder on my body than a medication. I exhausted all my options (including Remicade, Humira, Cimzia, and massive amts of Prednisone) before heading into my resection. Just personal preference.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 2/27/2010 3:03 PM (GMT -7)   
i just had surgery. tried cimzia for 14 mths then had a blockage. them switched to remicade but it did not help. so i had surgery. The GI says he will ot put me back on remicade unless i d onot repsond to anything else. he wants to hold that as a last straw. everyone is different he said so there is not a " by the book" procedure like wiht blood preasure and things.

a couple of questions: how do they know they have a leak? and what type of leak? are you getting infections (sounds like it by the antibodics) or are you bleeding some through the digestive track? My GI says they can scope and do so repairs via the scope-they have discussed this with me as an option. If it is a leak and you are getting infections, in my opinion, you should have that repiared surgically. when did you have the surgery?

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 2/28/2010 8:07 AM (GMT -7)   
Mirowpl--I had a resection surgery in June 09. I did great initially, but at the third week post-op I was admitted for an abscess. I had been having pain prior to being admitted. They did a Ct scan and it showed an abscess at the anastomosis site. They drained it and it came back a week later. This went on several times until they finally left a jp drain in, which then caused a fistula to the skin. The drain has kept me infection free, but when they removed it the fistula never healed. After a colonoscopy they diagnosed it as a leak from the anastomosis site. I've had 2 drains, 3 PICC lines with IV antibiotics, Imuran, Entocort, Flagyl etc... and nothing is healing the leak. The fistula heals and then abscesses and reopens. Everything I've read has told me that after this long--my chances of it healing without surgery is pretty rare. I DO not want another surgery right now, but I don't want to waste the "remicade option" if the odds are against me.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/28/2010 8:12 AM (GMT -7)   
I'd ask the doctor what the chances are that you'd end up having surgery anyway. I know remicade and humira typically work better for certain things. For example, humira has been shown to prevent and treat strictures very well. I don't, however, know how well remicade has been shown to work on abcesses or fistulas, since I haven't had problems with those myself.

Let us know what they say when you see them. I hope things get better. I know you must be frustrated with all you've been through.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/28/2010 10:24 AM (GMT -7)   
I've never had surgery, and my main symptom is diarrhea as my Crohn's is in my colon, so I don't know how similar my case is to yours...that being said, I'd try the Remicade. I was on it for a year or two (until it stopped working) and it really worked well for me. It seems much less invasive than surgery would be, too!!
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 2/28/2010 12:26 PM (GMT -7)   
my personal opinion is to do surgery to repair the spot causing the trouble. I assume surgery was done in the first place as you had run out of options. at least that is what happened to me. otherwise, to me, you will never know if surgery worked. yes, it is not easy and recovery is long and difficult, but i would still give it a try.
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