04-02-2014, 01:11 PM   #1
Carrie171087's Avatar
Join Date: Jan 2014
Location: United Kingdom

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I have suffered with 3 fistulas that have drained constantly for 2 1/2 years. I had 3setons placed through the fistulas January this year. They are now leaking more than ever. The smells just awful. I'm taking azathioprine but have been told if that doesn't work the next step is biological drug's.

Does anyone have any similar experiences?
04-02-2014, 05:59 PM   #2
Join Date: Mar 2014
Location: Stanton, California
Wow I can't imagine 3, just one drove me crazy...Sorry. I'm on Humira and have been for 4 years with decent results, but still got a fistula while on it. I did read some people are being treated for fistulas with increased doses of Humira, with good results, but haven't tried thatI was on Azathioprine for awhile, but showed no improvement. Humira is much better in my case, and never noticed any bad smells from the drainage...only when an infection was going on, even then it wasn't real bad.
04-02-2014, 08:43 PM   #3
QueenFox's Avatar
Join Date: Dec 2013
Location: Sydney, New South Wales, Australia

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I definitely feel your pain! I have 3 of these stubborn fistulas as well and have had them for over a year now. Unfortunately I have run out of treatment options and my next step is having surgery for an ileostomy, that doesn't necessarily mean the same for you though.

For biologics the most popular are Humira (Bi-weekly self injections) and Infliximab (Bi-monthly infusions), they are very similar and many have had great success with them. Sometimes it does take up to 3 months to begin working. Some doctors also try to have you on other medications at the same time like azathioprine, antibiotics, methotrexate. Biologics can seem a bit scary and have warnings about all these side effects over the medication - these side effects are very rare though.

Sometimes leakage from the fistulas isn't necessarily a bad thing - its getting all the bad stuff out. Keep changing pads to keep the area clean and not so smelly, a portable bidet may also help, again keeping it clean and boost your confidence knowing that you can wash away the smell while your out and about.

Let me know if you have any more questions I will be happy to help. Keep hanging in there it will get better!
04-03-2014, 08:18 AM   #4
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MikeinBklyn's Avatar
Join Date: Mar 2010
Location: Brooklyn, New York

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Pretty much the same as you. I had two fistulotomies and setons placed. What a PITA!

After about a year on Flagyl and Cipro they did improve, but never fully closed. Went onto Humira and they openings would almost close at the 10 mark but open because I was injecting every 14 days. My doc switched me to injections every 10 days and within two to three days, closed up, setons removed. It's been 4 blissful years now of comfort and getting my life back.

My feeling is to try Humira.

Best of Luck!!
Living the Dream one Day at a Time
04-03-2014, 08:59 AM   #5
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Location: chicago, Illinois

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I have 3 setons as well, the last was placed beginning of February. They drain throughout the day, more about2 hours after a BM, then back to constantly during the day. I change my gauze everytime I use the bathroom. I also try to do sitz baths 3 or 4 times a day. If you can't do that, they have squirt bottles you can bring in the bathroom with you and fill with warm water to clean it up a bit. I don't really have a strong smell, but maybe that's because I'm constantly cleaning them.
04-09-2014, 05:00 PM   #6
Tedcin's Avatar
Join Date: Feb 2014
Location: Connecticut

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Dealing with this now . I have had as many as 5 secton now only one . Just started hurmira yesterday . Not feeling week today really hoping it helps

04-09-2014, 05:13 PM   #7
theOcean's Avatar
Join Date: Jan 2014
Location: Toronto, ON, Canada

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Hopefully it does! I know that Humira's done wonders for mine. Good luck.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-11-2014, 03:20 AM   #8
Carrie171087's Avatar
Join Date: Jan 2014
Location: United Kingdom

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Thanks everyone it's nice to know I'm not alone this disease can really sick at times but you all and this forum has helped so much.

Good luck to everyone in the future. Keep strong. We're all here together.x

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