Did you start your Remicade with the seton in or out? How did that work out for you?

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 8:29 AM (GMT -7)   
Just wondering...how this all works...what was it like for you?

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/25/2009 8:47 AM (GMT -7)   
I had been on remicade for a year or so when mine went in, and I'm still on it. My seton will be 4yrs old in a few weeks!

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 9:02 AM (GMT -7)   
but keeping the seton in..it can't heal..because of the tube keeping it open..so why not remove it?

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/25/2009 3:55 PM (GMT -7)   
They might have plans to remove it after your remicade infusions are underway. That’s what my surgeon has planned ….. once I start the remi, he wants to take out the mushroom drain and seton…. Maybe you should ask your surgeon what his long-term plan is for you?

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 4:17 PM (GMT -7)   
oh okay..i see what you mean..i think i misunderstood thinking maybe you have been on Remicade for 4 years or so...thats a good idea to ask him...but u mean seton is that old..i get it...i haven't had enough coffee i guess ...

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/25/2009 4:22 PM (GMT -7)   
Haha I haven’t had enough either!! I wish I could drink coffee but it sends me running!

You are perfectly justified in wanting answers….. It’s a very frightening thing. I myself am petrified of Remicade, I don’t know why….. I just hear all these horror stories, but I guess I just have to wait and see how it goes for me before freaking. Hopefully I will have my first infusion soon…. I just want all my holes to close up already!!

I think it is fine to have remi with a seton, that way once inflammation is under control (the ‘underlying condition’ as my surgeon refers to it) – the area is much more likely to heal up properly.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/25/2009 5:29 PM (GMT -7)   
I think you got me and Phoebe mixed up...

I have had my seton in for almost 4 years, and I have been on remicade for almost 5 years. I have no plans on taking it out. I HATED all of the abscesses I had before the seton was put in, and I don't want to go back to all that. I am very prone to fistulas. And the seton does not cause trouble or bother me at all, so I'm leaving well enough alone and living and enjoying life while I can. My surgeon is totally fine with that. He would take it out if I wanted, but he is fine with me leaving it in also.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 6:55 PM (GMT -7)   
ahh chroniemomx2 i see what you mean...well thats the great part about being able to decide what is best for you..you can keep it or remove it...its up to you...and having an abscess is something that can strike terror in your heart..the pain..the surgery..the draining..its horrible..and i wouldn't wish it on my worst enemy..how has getting the Remicade infusions worked for you? Do you feel much better? Once you start Remicade..do you just keep getting it or do you stop eventually..i always wondered how that worked...take care!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/25/2009 7:27 PM (GMT -7)   
Remicade has worked awesome! It has given me my life back! I will continue to take remicade until it stops working or I have a reaction.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 8:42 PM (GMT -7)   
Thats good news for lots of people...! That gives me hope and a smile! My dad always would say things like..happiness is...so i say happiness is feeling good for sure! I am not going to give up on using Remicade

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin

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