Next step Remicade, Your experience?

[lovethebops]

So, my GI just told me to stop taking the Levaquin (antibiotic) I was taking for my anal fistula, because I called and told him of some of the bad side effects I was experiencing (dizziness, the runs, stomach upset, and bacterial vaginosis).

He told me the next step would be to have the tract examine by the colorectal surgeon under anistegia(sp?), to see the extent of the tract and to see if there was any underlying infection or abscess left. (I had the abscess drained in FEb.09 and the open draining tract since, for about 4 months).

Since my Crohn's is of the anal variety, I appear to have the fistulizing form of the disease. He said after it is determined wether I have an infection- (if not) they would proceed treating the fistula with the iv bio drug, Remicade. Since our discussion was over the phone, he did not have a chance to discuss risks and side effects. I have done some research online with regards to the medication, and the odds seem good and I would always like to try the non-surgical method when possible. I would love to live my life again with out an open fistula! Surgery would be the last resort.

So, I was hoping to hear some personal results from use of this drug, how effective it was for you, side effects, anything in general. I will have a chance to talk with him more about it at my next visit, which will likely be in a few weeks.
Thank you!

Bops

[noel44]

I have been on the new drug Cimzia now for 7 months. It is a tnf drug just like Remicade. But this is given subcutaneous, once a month.For Crohns. I had a recto-vaginal fistula and peri-anal. The recto-vaginal has closed ! As of yet the latter has not. I did have a flare but this time it wasn't as bad as the rest. I too was on Flagyl, but had to stop because I developed numbness in the feet. I am on Cipro and sulfasalazine( plus the Cimzia) .The Dr. can't give you the med. if there is a known infection, but remicade and Cimzia do promote fistula healing.Sometimes it works , sometimes not. I wish you all the best. Let us know what you decide.

[Trik_cee]

Please be advised that Remicade, when once started, if for whatever reason, you go 16 weeks without it, You won't be able to take it again...EVER... as the body will develope an allergy to it. Please be very certain it is a drug you want to take. I have a peri-anal fistual that acts up every now and again. Most times I let it alone to do it's thing. Sure for a day or two, the pain is difficult to deal with but it will open and drain. If it gets too infected I'll take Flagyl, which heals it right up. Have you tried or asked about Flagyl? I have also been on Remicade but it did nothing for my Crohn's colitis and in only 6 weeks I broke out in hives. Seems to be how things work for me..lol..I am allergic or highly intolerant of most Crohn's meds, of the rest, they didn't do anything, save Prednisone, which I now refuse to take.It's bad enough suffering with Crohn's, why bring on an onslaught of other problems associated with long term steroid use. So I sit here as I type on zero meds. I pray that this does not befall you.  Best wishes to you!

[coughting]

I did not have any side effects from the Remicade.  It did wonders for me.  However, when I got a bladder infection and went thru 2 rounds of antibiotics they found the fistula.  They said I would have to have surgery to repair the fistulas and when they went in they did the bowel resection and found I had 2 fistula which they repaired.  In my case it turned out a blessing that I got the fistula as when they did they report on the bowel they took out they found cancer.  It was early and I didn't have to have any other treatment, just visit to the oncologist for tests every 3 months for 11/2 years now every 4 months and later once a year.   If I had not had the fistula and bladder infection that would not clear up I wouldn't have had the surgery because I was feeling so much better from the remicade.  My chrons has been in remission since the surgery 2 years ago.
Your case is different in that your problem is the fistula.  I would think surgery would be best then start remicade to prevent anymore.  Check it out on the web and talk to your doctor.  I assume you are going to a GI dr. and he knows what is best for you.  

[lovethebops]

I read, and was told that Remicade can heal fistulas. However, they can cause abscess's that lead to fistulas so I will need to be examined to make sure there is no abscess *starting* anywhere they can see. It could get much worse if this was the case-since it can run down your immune system which makes you seceptible to infection.

Did you have any bad side effects? I keep wondering if this is the right route. I have a mild case of Crohn's, and though they found a small (tiny tiny tiny!) amount of inflammation in my small and large colon, I  have no real issues with my stomach, just fissures and fistula in my rectum. The Remicade is strictly going to be used in an attempt to heal the fistula, w/o surgery, for now. I wonder if this is too much because my case is not severe, we just want to avoid surgery for now. I feel like it will do wonders to get my quality of life back, that is as long as I do not get any of the nasty side effects remicade can bring.

[coughting]

Your doctor seems to be very good.  He is making sure that you do not have any open sores, or infection before starting remicade.

I was on remicade before a fistula and my chrons caused me to have bowel resection.  If it had not been for the fistula I would have continued on remicade.  It was a wonder drug for me and I was feeling much much better.  I was at the bottom when I started it and truly believe I would have been in the hospital within weeks if I had not started the remicade.

My chrons is in the small intestine so I don't know about your chrons.  But your dr and the surgeon should be your best friends.  If there is a fistula the surgeon may want to remove it before you start remicade.  Remicade is suppose to help prevent fistulas.

Best of luck