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Seton Removal And Fistula Healing Log

theOcean

Moderator
Hello there! I'm Ocean, and if you've dealt with a fistula on the forum chances are I've probably commented to you at some point. Tomorrow morning I'm finally getting my seton removed, and I wanted to create a thread to document my experience. I hope that way, someone else who is scared after surgery can feel better about their prospects, too. I also wanted to document this because when I was searching for people's experiences after getting their seton out, I didn't hear too many.

When I first had a fistulotomy, I was really scared and was convinced that my life would be changed forever, until I was on this forum and saw a member -- MikeinBklyn -- mention his good experience on Humira and how quickly his fistula closed. It gave me hope and made me feel like I could do the same.

Summary:
At the end of May 2013, I had my diagnosis change from Ulcerative Pancolitis to Severe Crohn's Disease because I had developed a perianal fistula. It apparently reached all the way up to my stomach and I was totally immobilized by the pain from it. I spent eleven days in the hospital before finally being allowed to go home. I was taken off Pentasa (totally ineffective) and finally got an antibodies test for Remicade which I had been on for a little while and found out I was extremely allergic to it.

My new GI switched me to Imuran and Humira, and Humira was absolutely incredible for healing my fistula. Remicade would work for maybe five days for me, and then the drainage levels and pain would be back to normal. With Humira, it was so helpful that since December/January it has completely stopped draining.

Tomorrow, I get my seton removed. :) I'll report back after, and continually from there about how everything is going.
 

valleysangel92

Moderator
Staff member
No questions, just wanted to wish you luck with your seton removal! I'm glad the humira has made such a positive difference for you! :)
 
Yay! So excited for you! I wish you the best and thanks for documenting it! I know it will be helpful to me when I FINALLY get mine out! Good luck today!!
 

theOcean

Moderator
Thank you everyone! :D

I just got back from my surgeon's office. I was a little nervous about if getting the seton removed would hurt, but it really didn't. I just felt one brief, uncomfortable tug -- and then she cut the seton string and it was done. She asked me if I wanted to rest for a minute, but I felt totally fine and was able to get up and walk comfortably right away.

She warned me I might get some extra drainage today from getting it removed, but I haven't experienced any since about December/January and when I checked at home I hadn't had any, not even a little blood. :)

I had a really aggressive recurring anal fissure because of the seton, so I'm hoping that will finally heal with that gone. Whenever I had a BM, it would always snag against the seton and cause me some pain because of its placement, too, and would also make cleaning afterwards really difficult... but now, nothing!

I'm really optimistic. :) Tomorrow is my Humira day, too, so I can only hope it gets better from here.
 

theOcean

Moderator
So, it's only been two days since I got my seton removed but I'm still really excited about it. Bowel movements have been so much easier to deal with and clean. And, the biggest development: I don't need to wear pantyliners anymore.

I haven't been getting drainage since about January already, but kept feeling the need to wear liners because of the seton. Whenever I would have a BM, the stool would snag on the string and be almost impossible to clean off -- and then it would get all over my liners, not to mention get irritated and cause the incision site to bleed. Now I don't have that anymore, so today I just didn't bother with liners. It's the first time I haven't had to wear them since I had my fistulotomy last May. :D
 

valleysangel92

Moderator
Staff member
Yay :) I'm so glad things are going well for you, it must be so exciting not having to wear liners any more :). Isn't it strange what we get used to dealing with.
 

theOcean

Moderator
It really is! It's such a relief not to have to think about anymore. Going through things like this makes you really appreciate the little things that make you feel normal.
 
Hi there, I;m new to this site. Came across your post re your seton removal. Sounds awesome that you had it removed and are doing well. I currently have a seton in place, had it replaced about 18mths ago now. Doesn't give me any trouble really and not much drainage at all apart from when having a BM every now and again. I haven't been Diagnosis with Crohn's however I do suffer from some symptoms mouth ulcers and have a skin tag but generally don't suffer from doubts of diarrhoea. Have been told to live with it if it's not troubling me. However it's always in the back of my mind and do I really want this in forever.
 

theOcean

Moderator
Hi there, I;m new to this site. Came across your post re your seton removal. Sounds awesome that you had it removed and are doing well. I currently have a seton in place, had it replaced about 18mths ago now. Doesn't give me any trouble really and not much drainage at all apart from when having a BM every now and again. I haven't been Diagnosis with Crohn's however I do suffer from some symptoms mouth ulcers and have a skin tag but generally don't suffer from doubts of diarrhoea. Have been told to live with it if it's not troubling me. However it's always in the back of my mind and do I really want this in forever.
Have you been put on any medication to treat it? Or gotten an MRI to check it? Fistulas aren't just caused by Crohn's, so that you don't have a diagnosis for it isn't too strange.

Most doctors recommend keeping the seton in, because there is always the risk that an abscess can get reinfected, or that there may be the need to repeat a fistulotomy. But after enough time, the fistula tract often matures and the likelihood of that happening decreases. That should be the case for you by now, from how long you've said you've had it in.

Even when I went to get my seton removed, my surgeon was still trying to remind me about the risk factors. But I've been adamant from the start about wanting to get back to how I was before, and got it removed. So in the end: it's really a personal decision. You just want to make sure that there's no inflammation or infection before it gets removed, hence the MRI. So if you would like to get it removed, just talk to your doctor or get in touch with your surgeon to start that process. :)
 
Ocean, I'm so happy to hear that things are better for you. I must confess, yes, I too wore panty liners when I had the fistula/seton.

Best of Luck to all!
 

theOcean

Moderator
Thank you! I'm pretty excited, too. I keep monitoring to see if my fistula has closed yet, and it looks like it's healing a little and that the hole is getting smaller every day. :)

It's also really wonderful how much more comfortable I feel. I used to get a lot of issues with chafing, and now I don't have to think about that anymore if I'm going out or know I'm going to be walking a lot. The fissures created from that seem to be slowly healing, too. After I'd have a BM I'd usually get a fair amount of blood from them, and now it seems like they open less and the area around them is less sensitive. I'm still taking sitz baths though in the hopes everything will heal a little faster.

Still no drainage from the fistula, either. I used to get days where it seemed to bleed for no reason (mostly attributed to the seton, I think), and now that doesn't even happen anymore. I'm so grateful.
 

theOcean

Moderator
Small update, but I worked out with my personal trainer today for the first time since getting my seton removed. Now that it's out, we can finally do a bit more cardio since before my seton would cause terrible chafing to the point where I was bleeding.

And today... I didn't have that! Spent awhile on the treadmill as well as the elliptical, and was totally fine. No soreness, no chafing. I felt so encouraged by it that I think I'm going to sign up for the Gutsy Walk with my mother. :)
 

theOcean

Moderator
This week I've been having issues with my Humira provider. My insurance got terminated back in February with no warning (despite the fact that my father knew about it three months prior, thanks Dad) and I've been receiving it for free out of sympathy until I can get properly enrolled on my new insurance plan with my mother. It doesn't officially come into effect until August, so we had to fill out an Exceptional Access Program form to get in ahead of time. It's been stuck in limbo though, so my Humira still isn't covered.

I'm still getting it for free in the meantime, but they're always late. They can only give two boxes (four pens) at a time, but that's only a month's supply for me. I was due on Tuesday and it's now Thursday and my Humira only just arrived. Fistula doesn't seem to be affected either way, but, you know. Important medication, very important treatment for unfortunate complication. I'll finally get to inject myself later today.

Fistula itself seems to be doing fine, though! The skin around it is still healing and I hope it'll finish leveling out soon. I was examining the fistula earlier and I can see the skin healing internally -- all looks very dark, very bruised. I'm still passing gas through it, but when I look I actually can't see a hole anymore from where the seton used to be. Taking that as a good sign and I hope it'll close up soon (wherever it is).
 
What great news. I'm so glad to hear how well you are and you've had your seton removed. I have 3 setons from jan 14 and am just starting my journey with it all. It's really helped to read that there's a light at the end of the tunnel. I wish you all the best in the future. X
 

theOcean

Moderator
Checked out my fistula today after a shower and it looks like it's finally closed!! I could almost cry. Going to continue to monitor it in the hopes it won't reopen -- I doubt it will, considering how I've been -- but otherwise: it finally happened!

Now it's just time for my skin to finish leveling out. What a long way I've come since last year when I first had my fistulotomy.
 
A small update. I had my seton removed on 06/02/2014. Now hoping Humira will help it heal and close fully. I am cautiously optimistic as the fistula which seemed to be healing very well deteriorated to form a painful granulated tissue in a span of 2-3 days a couple of times in the past 4 months.

@theOcean: I was wondering how you were monitoring the healing and closing process of the fistula. I guess the obvious answer is visually but as you know it is not as straight forward and simple :)

Another question. I have been experiencing a very sensitive and itchy feeling especially after BM in the anal region. Was wondering if anyone else had similar issues and what can be done to mitigate it. I was trying Calmoseptine which helps a little but but the itchiness persists to a certain degree.
 

theOcean

Moderator
Congrats! :D I really hope that the Humira helps it close for you.

And I'be been checking visually so far, yes. Once it's been a bit longer I was planning on asking for an MRI to see if it's been healing internally as well.

As for itching: that isn't something that I've experienced, but I know that some people with peri-anal disease get that. It says that calmiseptine helps temporarily alleviate pain/itching, but it also decreased moisture in the area and I wonder if that may make it worse?

I experience fissures sometimes but I only really put Vaseline on when that happens, though it helps for raw skin in that area as well.
 

theOcean

Moderator
Small update: my GI is putting me on 6mp to help treat the fistula in addition to my Humira. I find that it sometimes reopens close to when I'm due for my Humira, then closes again after it. Hopefully re-adding an immunosuppressant will be what I need to tide it over, and if not: increased frequency of my Humira.

He says my fistula is very complex, and branches in many areas internally, so he's not sure how likely it ever is to fully heal. But we're keeping positive especially since my fistula seems to want to close! It's just a matter of keeping it that way.
 

dave13

Forum Monitor
Location
Maine
Having setons done this Friday.I am suppose to start Remicade as well.I know I don't have to say I am not looking forward to it,but,I'm not looking forward to it.

I hope the 6mp helps.:)
 

theOcean

Moderator
Aw! Good luck with everything -- I really hope the fistulotomy goes well and that Remicade works well for you. :) I'm still waiting for my silly 6mp to kick in!

Hopefully we'll get to see a post by you on this section one day, too. :D
 

dave13

Forum Monitor
Location
Maine
Thanks,I jump through the pre-surgery hoops today.I think he said five setons,I guess they form a sort of ring around my rectum.I had these at a colonosopy a year ago and my GI never sent me to have them checked out or said anything to me.I assumed it was really bad hemorrhoids,possibly infected.I told my new GI about them and I was with a colorectal surgeon two days later.

I will know more after Friday.I'm told the colorectal surgeon,my GI and myself are gonna talk and get all on the same page-FINALLY!!!-and figure out how to proceed after the setons are in place.I don't know how I will afford the remicade..$$$ are pretty tight and my insurance is not the best.I had to go to Canada to afford pentasa.I'll figure something out,'Never give up,Never surrender',right? Sorry for clogging your thread,I can post in the support group.

Hope the 6mp kicks in soon.Feel free to move this post if you want.:)
 
Hey Ocean! I just wanted to check in and see how your fistula has been healing. Does it seem like its all closed up yet? Have you had any issues with it? I hope you are doing well!
 

theOcean

Moderator
Oops! I didn't see this until now. I actually just saw my GI today and had it looked at, though I check bi-weekly myself. It's healing great! It looks like it's closed now and everything looks super healthy. Crohn's is also totally under control. :) I'm very happy!
 
Hi @Ocean

It feels so good to read your success story. I hope you're still feeling good :) My hubby has 2 setons for the 2 fistulas, and is starting Remicade in 3 days. Really praying everything goes well and Remicade is the magic med like everyone says..

Hugs
Aarthi :)

-----------------------
Hubby dx with Crohn's in Feb 2015
2 anal fistulas (setons placed)
Taking INH for Latent TB since we're from India
Meds - Cipro, Apriso, Bentyl, Tramadol, Vit B6, B12 and Vit D
 
@AARTHI,
It feels so good to read your success story. I hope you're still feeling good :) My hubby has 2 setons for the 2 fistulas, and is starting Remicade in 3 days. Really praying everything goes well and Remicade is the magic med like everyone says..
My experience has been similar to your husband's including treatment for latent TB. I'm now soon having REMICADE #7. The setons were removed & the fistula closed for one fistula. Unfortunately, the seton severed on the second fistula shortly after placement. This fistula tract was in a continuous abscess cycle. I finally went to Emergency & they did another I&D & placed a new seton. I anticipate another several months before this seton can be removed to allow the second tract to dry up. Otherwise, Remicade combined with a seton placement did work for Fistula#1. The Colorectal Surgeon had suggested Fistula #2 may dry up without the seton but after several months of waiting & disappointment I finally had another seton placed.
 
@Jay Woodman

Sorry to hear about the second seton. Hope it all falls into place soon! You're having treatment for latent TB too? That's surprising! Are u from Asia? Our GI said since Indians are prone to TB infection, it has to be a precautionary thing to be done (though my husband got his BCG vaccine 2 days after he was born)

Also, has Remicade helped with your Crohn's symptoms?
 

theOcean

Moderator
A PM with questions about fistulas got me to sign in to this site again, so I feel like I should update this thread.

I last posted in August 2014, and I've had some updates since then:

December 2014: (the day before Christmas Eve, in fact!) my abscess recurred. Luckily, I knew what I was dealing with, and went to the ER immediately. I had it drained late on December 23rd, and was able to go home to my family on Christmas Eve. It was a similar situation to my initial one -- two abscesses, one seton inserted. They admitted to me that they weren't able to get the seton in as well as they did previously, but they put it there, at least.

June 2015: My abscess recurred again, in the same spot as the one they (twice now) didn't try to put a seton in. It burst in the ER, and they just gave me local anesthetic and drained it there. I was sent home without them thinking I needed anything else done. My surgeon (as well as any other GI surgeon my hospital had, apparently) was away for a conference, and the OR was pretty much shut down for the summer. I was able to get an appointment, but I had to wait.

August 2015: I finally got to see my surgeon. She wanted to place the seton where the people in ER hadn't, but so much time had passed that she could no longer find the tract. I essentially had an exploratory for no reason. :(

January 2016: The same abscess recurred again. This time I camped out in my surgeon's office until she would see me, and she agreed to try the surgery and do a seton placement. But she didn't have any immediately available bookings, so I had to wait. I was put on the top of her waiting list.

Two days later, it burst on its own and I had to go to the ER. I was admitted, told them that my surgeon knew I needed an operation, and was waiting for surgery. It turned out my surgeon was actually the one doing surgeries for ER patients the next day. This time, she put a seton in the spot with the constantly recurring abscess. It seems to be looped between the entrance of my previous seton site, as well as the abscess location. For the first time, I had a surgeon tell me that they were confident that my abscess won't recur anymore.

I'm still dealing with some of the recovery from my surgery, but mostly it's been bouncing back from being put on Flagyl/Cipro again, which caused infinitely more side-effects than they ever did before. :(

One of the things I wanted to add to this post is that I don't get anxious about setons like I used to, and I hardly even bat an eyelash on this recurring anymore. Which is a weird place to be! But it's preferable to where I was years ago. But also: I don't have any inclination at all to ever get a seton removed. Having one in is clearly so much less stress than dealing with the risks of getting it out. (And also, this one is actually comfortable.)

I did want to add some good news to this, though:

Despite everything that's been going on, my complex fistula has actually been healing! All the other branches had matured except for this recurring one, and are actually healing and seem to be going away. I'm still on Humira, but biweekly instead of weekly. I'm also still on 100mg 6mp. (I've also still been in remission since October 2013.)

So, despite the extra stuff that's been going on, this is still kind of a successful fistula story!
 
@Ocean I think this is a wonderful fistula experience journal to share with others. I've been through my own fistula journey & finding information on fistualizing crohns & others experience is difficult.
 
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