Remicade while having fistula?

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Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 10/3/2009 9:30 PM (GMT -7)   
Hi! Everyone,
 
I am a Crohnie for the last 18 years.  After two major surgeries and repeated hospitalization, I am now an ostomate.  I will be going in for Remicade in mid October due to recurring fistula.  Despite all the good things I read about Remicade, I am also worrying about the side effects and possible long term problems.  However, I don't have many choices left.  Anyway, I am wondering if anyone knows that I can still get the IV while having fistula (no absess) since they tend to come and go?  I have to schedule the appointments ahead of time so it will be difficult to cancel the last minute.   
 
Also, can anyone kindly tell me how to calculate the induction period?
 
Thank you for your help.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2009 5:38 AM (GMT -7)   
Remicade is one of the best medications to heal fistulas. I say go for it, why suffer anymore. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 10/4/2009 6:23 AM (GMT -7)   
Hi, i have two fistula's that are through the skin on my stomach (the name for them i can't spell!) i was put on remicade for them unfortunately i only got two doses as i got a reaction :( The smallest fistula that i have closed after two weeks of the first dose and the bigger one drainage slowed right down and only needed a dressing rather than a stoma bag, i reckon it would of healed if i had stayed on the remi for longer. I would go for it if i was in your shoes . Wishing you the best of luck and really hope it works for you Bev x  smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 10/4/2009 9:49 PM (GMT -7)   
Thanks so much for your input. I guess I thought that I am not supposed to be on Remicade while I am having fistula (that I have to wait till it is healed). Thanks for your help.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/6/2009 1:52 PM (GMT -7)   
I have been on remicade for almost 5 years. I have gotten it before during and after fistulas! :) I have had a fistula for the last 2 years, and I keep getting my remicade. When I had my abscesses, I would always still get my infusions too. Fistulas and abscesses are considered part of the disease therefore you can get your infusions. I hope it helps you!

Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 10/6/2009 3:08 PM (GMT -7)   
Chroniemomx2,

Thanks so much for sharing your experience. I guess we all have our share of difficult journey to wellness. I cannot be more thankful for all of your help. Antibiotics (Cipro and Flagyl) used to help with fistulas but the last time I took it, I got very sick. I was very nauseated, couldn't move my limbs/fingers and toes well, even had blackouts. So I stopped taking them after about 10 days or so. I finally came to term with getting Remicade injection. I guess deep down inside I wonder what if it doesn't work or if I get terrible reactions from it (I havn't had best of luck in the past decades). Anyway, my G.I. doctor said that I shouldn't be on Remicade while I was taking the antibiotics for fistula. That was why I was confused about if it was the drugs or the fistulas that are preventing the IV.

So you meant despite being on Remicade, you still get fistulas and abcesses? But they do help cutting down the recurrance, right?

Thanks again for your help. I hope the drug will help me. I am looking forward to gain some weight and have my life back.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/6/2009 5:36 PM (GMT -7)   
No, you CAN be on antibiotics while recieving remicade. I was on a high dose of flagyl and also on cipro when I first started remicade. And I continued on the flagyl for about a year.

Yes, unfortunately you can still get fistulas while on remicade. And yes, they keep them at bay. I have had 3 while on it. One came becuse I had to delay an infusion for 5 weeks do to a viral infection that left me with a temp. for 5 weeks. And another I got almost a year ago...not sure why on that one, but it closed up after the next infusion. And the other one, I think I had from the beginning, but my surgeon couldn't find it for a few months, but eventually did and he put a seton in it, which is still in. I am obviously just really prone to fistulas. Remicade gave me my life back...hope it works for you too!

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 10/6/2009 6:38 PM (GMT -7)   

I have a fistula which was operated on and is healing – (has been healing for 12 weeks) and I am not on remicade. The mushroom drain and seton which are still ‘in there’ are coming out after my 2nd infusion in two weeks. Remi is said to be great at healing fistulas, yaaaay!


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/6/2009 7:24 PM (GMT -7)   
You can be on antibiotics with Remicade. In fact, my husband was sick as a dog in the hospital, and one step away from a major colon resection, fighting a crohn's flare and a c-diff infection when as a last ditch effort his GI decided to try remicade. This is when he was taking vancomycin for c-diff, and obviously had an ongoing infection. For him, it was either try remicade and try to keep c-diff under control with vancomycin, or go with major colon resection. I am so glad that they chose remicade. So far, the only side effect that my husband has from remicade is joint pain and fever for about 36 hours after infusion. Then, all is well.

Fistulas and antibiotics for fistulas, are part of crohn's disease, and you can definitely take remicade if that is what you are taking antibiotics for. If you have bronchitis with fever on the other hand, they probably will hold off on the infusion until you can get rid of the active infection.

I hope you find relief with remicade. Lots of people do - I hope you'll give it a shot, and that it'll help you heal.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 10/6/2009 8:14 PM (GMT -7)   
Hi and thanks to all of you!

Now I am a little confused about fistulas. I have them all the time since my unscheduled ileostomy back in 2006. They just come and go without warning. I do notice I tend to get them more often when I am stressed out and not getting enough rest. My fistulas can be painful and bloody. Cipro and Flagyl seem to have lost their effectiveness lately. Nevertheless, I have never needed "seton". I guess it doesn't matter as long as the drug reduces fistulas.

It is really inspiring and a big comfort to hear from you. I really am thankful for web sites like Healingwell. You guys have helped me and others in so many ways. I think only people like us who are going through this kind of challenges in life (or the ones who are taking care of people like ourselves) know how tough life can be at times. I really am grateful.
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