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Crohn's Disease Forum » Surgery » Fistula Success Stories » Seton Removal And Fistula Healing Log


 
04-27-2014, 10:35 PM   #1
theOcean
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Seton Removal And Fistula Healing Log

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.
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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!
04-27-2014, 10:38 PM   #2
theOcean
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Also, if anyone has any questions about my experience or wants advice, feel free to ask, too! I'm really open about talking about fistulas and how to treat them.
04-28-2014, 04:53 AM   #3
valleysangel92
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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!
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

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Non CD meds - Gabapentin, paracetamol, ventolin
04-28-2014, 05:35 AM   #4
Mattie
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Good Luck Ocean and keep us informed. Your posts are always helpful.
04-28-2014, 05:52 AM   #5
justbreathe8
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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!!
04-28-2014, 06:37 AM   #6
MikeinBklyn
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Ocean, so happy to hear that you are doing better!

Good Luck with the seton removal, talk about relief!

Cheers,
Mike
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04-28-2014, 12:52 PM   #7
theOcean
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Thank you everyone!

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.
04-30-2014, 11:04 PM   #8
theOcean
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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.
05-01-2014, 03:46 AM   #9
valleysangel92
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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.
05-01-2014, 04:05 AM   #10
theOcean
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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.
05-01-2014, 02:24 PM   #11
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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.
05-01-2014, 02:40 PM   #12
theOcean
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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.
05-02-2014, 05:19 PM   #13
MikeinBklyn
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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!
05-03-2014, 06:18 PM   #14
Sailorluna
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Yay! I am very excited for you! So happy to hear a success story.
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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
05-03-2014, 06:39 PM   #15
theOcean
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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.
05-07-2014, 06:48 PM   #16
theOcean
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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.
05-07-2014, 06:58 PM   #17
justbreathe8
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Cool!! that would be fun!! I want to do a run when mine are out too!! I'm glad you are still progressing!!
05-15-2014, 12:47 PM   #18
theOcean
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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).
05-16-2014, 07:22 PM   #19
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Thank you very much for sharing. I'm so happy your doing so good!
05-19-2014, 12:43 PM   #20
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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
05-19-2014, 12:54 PM   #21
theOcean
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Aw, I'm so glad that my posting this helped! That's exactly what I hoped for when I started this thread. Good luck with your fistulas, and I hope you do well, too!
05-21-2014, 02:58 PM   #22
Jay Woodman
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Your information sharing has been a phenomenal help to me. I really appreciate you openly sharing your fistula & seton experience!
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Perianal Crohn's
Curcumin
Garlic
Grape Seed Extract
Vitamin C
Vitamin D - 5000 IU Daily
Omega 3 - 2 teaspoons NutraSea daily
Methotrexate
Remicade (+Hydrocortisone)
05-21-2014, 03:52 PM   #23
theOcean
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I'm so glad to hear that! It can be such a frightening, worrisome thing to deal with so I wanted to be as open about it as possible to help people.
05-28-2014, 04:04 AM   #24
theOcean
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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.
05-28-2014, 05:17 AM   #25
justbreathe8
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I was going to write yesterday and ask how you were doing. Yay!! Such great news for you! Hopefully this is all behind you!
05-28-2014, 05:56 AM   #26
Sailorluna
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Yay!!! So happy for you.
05-28-2014, 12:08 PM   #27
theOcean
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Thanks! I hope this is all behind me, too.
05-28-2014, 01:39 PM   #28
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@theOcean: happy to hear about your progress.
06-06-2014, 09:49 AM   #29
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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.
06-06-2014, 12:43 PM   #30
theOcean
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Congrats! 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.
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