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Please tell me about your success closing an enterocutaneous fistula with Remicade

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Oldbie

Hi, I am new here, but have been reading your posts for years. I have Crohn's Disease and unfortunately recently developed a fistula connecting my small intestine and abdominal wall. I have been on TPN for four months, but the fistula won't close. My doctor wants to start me on Remicade, which I've never done. I am nervous about the potential side effects, but my doctor says there is a good chance it can close my fistula and the potential benefit is worth the risk.

I would love to hear from folks who have successfully closed their enterocutaneous fistula with Remicade. How long did it take? How did you know when it was closed?

The other thing is my doctor tells me that once I'm on Remicade I would have to stay on it, or whatever progress I might make will reverse. I would rather use it just to close my fistula, then get back off of it.

I would also love to hear from folks who have successfully used Remicade for just a short period of time, to get through a particularly bad period, then went off of it yet maintained remission. How long were you on it?

Thank you for taking the time to read this. I have so much love and respect for every one of you who suffers with Crohn's. It is such a lousy, disruptive condition, and I have suffered with it for over 40 years, including three surgeries and many hospital stays. My surgeon says I have too much inflammation to do surgery this time. I am counting on the Remicade to help me out of this crisis and would be so grateful to hear from others who have had success with this treatment.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
Hi - I went on Remicade about 16 years ago due to having multiple fistulas - recto-vaginal and peri-anal...they closed up within a short few months of starting Remicade.

If you search on the forum, you will find mine and other success stories about remicade helping with fistulas.

As far as side effects - I've had a few, but nothing that would cause me to stop the remicade and risk having more fistulas. Hopefully others will chime in here....
 
R

Robcos02330

Remicade is exactly what closed my two fistulas located on my abdominal scar. Closed within a few months. Sooner if I remember right. This was waaaaay back in late 90’s.
 
O

Oldbie

Thank you, Rob! That is good to know. I have now had three Remicade infusions and my fistula is outwardly getting smaller, but it still drains a little bit. No side effects to the Remicade so far, though, and it is definitely helping according to the MR Enterography pictures.
 
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Robcos02330

Oldbie said:
Thank you, Rob! That is good to know. I have now had three Remicade infusions and my fistula is outwardly getting smaller, but it still drains a little bit. No side effects to the Remicade so far, though, and it is definitely helping according to the MR Enterography pictures.
Click to expand...
That’s great news. It will gradually drain less and less-then bye bye fistula forever(I would guess). We will hope for no new surgeries and thus, no more fistula! I worked for years with the active fistula on my abdomen. Was wearing towels underneath my shirt/pants. Ridiculous, I should’ve claimed disability or At least tried. Live and learn!
best wishes,

rob
 
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