Share Facebook



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

My Support Groups:
Seton's

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
Rxdi
 
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
 
QueenFox's Avatar
 
Join Date: Dec 2013
Location: Sydney, New South Wales, Australia

My Support Groups:
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
MikeinBklyn
Forum Monitor
 
MikeinBklyn's Avatar
 
Join Date: Mar 2010
Location: Brooklyn, New York

My Support Groups:
Carrie,

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
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
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
 
Tedcin's Avatar
 
Join Date: Feb 2014
Location: Connecticut

My Support Groups:
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
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
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
 
Carrie171087's Avatar
 
Join Date: Jan 2014
Location: United Kingdom

My Support Groups:
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
Reply

Thread Tools


All times are GMT -5. The time now is 07:29 PM.
Copyright 2006-2017 Crohnsforum.com