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Crohn's Disease Forum » Surgery » Fistula Success Stories » How do i get rid of my fistula ?


06-20-2016, 12:33 PM   #1
Jenny92
 
Join Date: May 2012
Location: Surrey, United Kingdom
How do i get rid of my fistula ?

Hi,

I wanted to find out if anyone has any advice when it comes to fistulas. I was reading through the threads and i know a few people have had success with Humira and Remicade.

I have had a fistula for about two years with a seton, to help it drain. I have tried Remicade but it didn't work for me. I then moved onto Humira and it helped keep the drainage under control and stopped me developing new abscesses, but it hasn't cured by fisutal. I have now developed drug induced lupus and have had to stop taking the Humira. My fisutal is starting to get worse and i am starting to get other Crohn's symptoms. I'm not sure if there is anything else i can take my main problem is with perennial Crohn's.

I have tried Methotrexate and am currently taking Azathioprine. I have also tried the trial of Ustekinumab and i have also tried Rafabutin. In the UK we can't get prescribed Cimzia for Crohn's which i was really hoping to try.

Is there anything else out there anyone would suggest for fisutal healing and perennial Crohn's. Any help advice would be much appreciated.

Thank you
06-20-2016, 02:16 PM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I have heard of a drug called Simponi. I don't know the technical name. I wish you the best. Sending support.
06-21-2016, 09:59 PM   #3
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

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Simponi is another anti-TNF, so if Remicade and Humira are a no go, I doubt Simponi would do anything.

I have had good luck with Flagyl/Cipro for my fistulas and perianal Crohn's. I have been on them for a year now.

I am also on Entyvio (Vedolizumab) and I think it is also helping perianal disease and fistulas, but not enough to totally heal them. Not sure if it is approved in the UK for Crohn's? Newly approved in Canada.
__________________
Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
06-15-2017, 11:52 AM   #4
Echodog
 
Join Date: Jun 2013
There is also Entyvio which didn't work for me and Stelara which is working. The new protocol calls for an infusion then an injection every 8 weeks. I started in January and it has shown results. Fistulas are draining but much better and I'm hoping in the next month or 2 that I will see more progress. It takes a long time for fistulas to heal. (When Remicadee worked for me, they got better quickly but it can take 6 months with the other drugs) . I have also heard Xeljanz works great but until Stelara stops working or doesn't do what it is supposed to, that's a can I will kick down the road for another fay


07-10-2017, 09:59 AM   #5
Echodog
 
Join Date: Jun 2013
There is also Entyvio which didn't work for me and Stelara which is working. The new protocol calls for an infusion then an injection every 8 weeks. I started in January and it has shown results. Fistulas are draining but much better and I'm hoping in the next month or 2 that I will see more progress. It takes a long time for fistulas to heal. (When Remicadee worked for me, they got better quickly but it can take 6 months with the other drugs) . I have also heard Xeljanz works great but until Stelara stops working or doesn't do what it is supposed to, that's a can I will kick down the road for another fay


I've dealt with fistulas on and off for 25 years. I had 2 ostomies and reversals which healed them but they came back. Remicadee worked like a miracle until I had an allergic reaction. Humira worked well for a few years then stopped. I'm on the new Stelara protocol which starts with an IV infusion and then injections 4 weeks apart and it's working! There is still drainage but it's a fraction of what it was. I have fistulas draining from 4-5 sites and some have stopped and others are draining minimally. It took 6 months to really see that it was working but it is.
Xeljanz is supposed to work really well but in America, it seems like it's hard to get. My dr is able to move mountains when needed and she wasn't able to get it for me before the Stelara.


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