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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Seton! Glad to be gone! (Please go away fistula!!!)



08-17-2011, 06:31 AM   #1
Mooch
 
Join Date: Aug 2011
Seton! Glad to be gone! (Please go away fistula!!!)

Hi, i got my seton removed about 3 weeks ago and it is wonderful! You do get used to it, but was great to say goodbye!
How did anyone go with the healing of a fistula after having one removed? Currently on remicade and flagyl. I am axious about the fistual healing now.
It seems to be going ok, still draining a bit.....does this mean the chrones is still active?

__________________________________________________ ______________
Diagnosed with CD and abscesses and fistulas April 2011
Seton placed and removed, 2nd fistula laid open
Currently on Remicade, Flagyl, B12 injections and multivitamins
Have the most amazing fiance who is supporting me each step of this new road!!!!
08-17-2011, 07:18 AM   #2
sawdust
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Exciting news, Mooch! Feels like you're "missing something," doesn't it?

Did you get instructions from your surgeon or GI? If it's not clear to you, I would give them a call and be sure about what's next and what you can expect now. There are folks here who are closing up fistulas with Remicade (an assumption from your Your Story post and this one), but I would talk to to your doctors about your case specifically.

Welcome to the forum, BTW.
08-17-2011, 07:23 AM   #3
Mooch
 
Join Date: Aug 2011
Thanks for the reply. Docs said i would know if it wasnt healing and would also feel the hard lump again. I dont feel the lump, its more the leakage. Had a phone consult yesterday as i am worried that it may not be the fistula leaking but coming out of places it shouldnt! Got to do a pee test this week to check for a UTI, but i know its definately not that! This is where i originally thougth the leakge started but assumed after i had the seton put in that it was from that spot (perianal). Ohh the joys of this adventure!
08-17-2011, 10:53 AM   #4
sawdust
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Ohh the joys of this adventure!
That's the understatement of the day!

Sounds like you're in good contact with your doc, which I'm happy to hear. I'd keep and eye on the source of the leakage so you can tell him that as well when you know what's going on there.

Hopefully, someone can help you out a little more on healing with biologics - mine was was removed with surgery.
08-18-2011, 06:03 AM   #5
Mooch
 
Join Date: Aug 2011
i cant have the fistula removed as it is close to the sphincter muscle. Wish i could! I had the other one laid open and the pain was unbearble but worth it in the end. It healed beautifully! How has anyone gone with the waiting to see if it will close? I seem to think about it all the time!
08-30-2011, 02:12 PM   #6
stretch
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Join Date: Jul 2011
i cant have the fistula removed as it is close to the sphincter muscle. Wish i could! I had the other one laid open and the pain was unbearble but worth it in the end. It healed beautifully! How has anyone gone with the waiting to see if it will close? I seem to think about it all the time!
I had setons in for years, the fistulas were healing nicely and getting lower towards sphincter muscle in the end one seton fell out and the other came undone and i pulled it out by mistake whilst trying to retie it.

But that was last september and I haven't had any discharge or fistula since then.
09-01-2011, 05:43 AM   #7
MikeinBklyn
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Having a seton removed is something to celebrate!

After increasing my Humira injection from once every two week to every ten days, the fistula closed up in two days. Thankfully it has been closed for over 6 months.

Flagyl is the pits, I hope never to have to take that horrible drug again, it made me so sick.

Good Luck to all.
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12-18-2011, 03:35 AM   #8
ruby24
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Join Date: Dec 2011
Location: New Zealand
Hi everyone,

I had three seton's in, the first went in just over a year ago and I have had them all removed a month ago. I am on Humira and there is still some drainage happening, seems to be heavier after a bowel movement but less since the setons were in. Around where the fissure was, the skin is hard and a little tender (has been that way since before setons were placed). I am just praying that it will heal!
How long does it normally take to heal?
Unfortunately NZ does not yet increase humira injections to anything more than fortnightly for those of us who suffer from Crohn's fissures. And it is waaaaaaaaaaaaaay too expensive to buy - costs about $700 per injection.
Does anyone have any advice on how to help it heal after the seton has been removed? eg hot baths, creams? Any help would be much appreciated! My doc is pretty useless, just tells me to get my GP to refer me if it comes back
12-20-2011, 05:27 AM   #9
heameljon
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Join Date: Nov 2011
Location: Richmond, Virginia
For all who have had your setons removed, do you have the cutting or non-cutting kind? I have 3 non-cutting seton's and am wondering if it is possible for the doctor to remove them without putting me under? I have had setons removed before to put plugs in but both times I was asleep and there is one of the seton's I am hoping he will remove soon.
__________________
DX 1993

2 Bowel Resuctions, 1 Fistula with 3 Setons.
Have taken Remicade, Immuran, Bactrim, Asacol, Cipro,Flagyl, Apriso, Prednisone, Percocet.

Feb. 2012 colostomy.
Sep. 26, 2012 permanent colostomy.

My stoma's name is Pita
12-20-2011, 08:32 AM   #10
Sailorluna
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I had a seton removed yesterday. He just snipped the line and pulled it out. No pain and I was awake.
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
01-15-2012, 02:44 AM   #11
ruby24
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Join Date: Dec 2011
Location: New Zealand
I had three non-cutting setons removed and he just cut them and pulled them out also. No pain and no anaesthetic either.
01-18-2012, 01:35 PM   #12
vanittany
 
Join Date: Jan 2012
Hi! I hear a lot of people mentioning that they are on remicade or humira after removal of fistula. I have not been on meds since after my JPouch placement for uncontroled UC. I am wondering if the meds are to shoo the fistulas away or if they are Crohns management.
01-18-2012, 02:48 PM   #13
Sailorluna
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I am on humira for both goals.
01-23-2012, 03:05 AM   #14
ruby24
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Join Date: Dec 2011
Location: New Zealand
i'm on humira for crohn's management and its the only drug available in New Zealand that will deal effectively with the fistulas. So far so good!! I have had them out for two months and no recurrence and possible healing happening!!! After four years I hope this is successful!
09-24-2016, 04:45 PM   #15
sadiekins
 
Join Date: Aug 2015
Location: Memphis, Tennessee
I have had 2 setons for almost 2 yrs. Im on my 9th ejection of entyvio. This is working very well for me since Remicade made me have a mini stroke after 2nd infusion. There was some confusion about when they were to remove them. My GI doctor was shocked when he found out I still had them. So, to the surgeon Wed and I believe he will just remove them right then. I had the go ahead a year ago by my GI doctor but there was some confusion with the surgeons. I will be so glad when they are out!....Crohns Bites!

Entyvio
6MP
09-24-2016, 04:48 PM   #16
sadiekins
 
Join Date: Aug 2015
Location: Memphis, Tennessee
I have had 2 setons for almost 2 yrs. Im on my 9th ejection of entyvio. This is working very well for me since Remicade made me have a mini stroke after 2nd infusion. There was some confusion about when they were to remove them. My GI doctor was shocked when he found out I still had them. So, to the surgeon Wed and I believe he will just remove them right then. I had the go ahead a year ago by my GI doctor but there was some confusion with the surgeons. I will be so glad when they are out!....Crohns Bites!

Entyvio
6MP
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