Hello - Fistula's

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Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/16/2010 6:45 PM (GMT -7)   
Hi there, I wanted to first introduce myself.  I am Joanne and I was diagnosed with Crohns Disease about 1.5 years ago.  I think I have had Crohns for a long time though.  I am currently on Humira.  I have 1 Fistula that is constantly breaking open, healing and breaking open.  I went to a surgery doc today and they said a Seton would be my best bet.  Can you tell my how painful this surgery is  and any information?  I am also going to call the doctor again tomorrow to ask more questions.  My colorectal surgeon has me scheduled right now for Monday.  As a woman I am worried about the look of the rubber band loops.  Are they noticeable?  Do they cause pain?  Do they ever get caught on anything?  I want to still feel like a girl and am very embarressed to have this problem at all.  I really am glad I found this forum.  Thanks in advance to you all for any and all advice you can give.  My emotions are running high right now as I have already had two small surgeries for abcesses prior and don't want to be cut again :-(.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/16/2010 8:48 PM (GMT -7)   
Hi there Satie, and welcome to the forum.

All your concerns are completely normal, and very common. In fact, so many people ask these questions before their first seton surgery that I put together a list of our very best threads on the topic, in the hope that they would answer some of the questions and fears of people like you.

I've been through this myself, and remember how scary it was before the surgery, when I didn't know what to expect. Don't worry, it does get easier with time, as I hope you'll see in the fistulas thread. You can find the link in my signature below.

All the best to you,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 2/17/2010 10:02 AM (GMT -7)   
Hi Joanne,
Welcome :) I had a reply set to post but then my computer hiccuped and it disappeared...
I agree with Ivy, check the threads in her signature, they may be very helpful for you. I've also posted about my experiences with my abscesses, fistula and seton.

I had surgery for an old abscess in December and had a seton placed. He began tightening it about 5 weeks ago and then it fell out last week! I had no idea it would come out that quickly and I didn't even realize it was gone until I was in the shower, I guess I flushed it away!

My seton surgery was one of my easiest, I think because it finally addressed the true source of the infection and pain. I loved my seton once I got used to it. It was just a little yellow rubber band tied off at the end and while it drained a lot, it kept me from having that terrible pain all the time. I also had an open incision that was a little freaky- but as long as you keep it clean, it really is okay. It was mentally challenging to get over the wide open cut and the seton but it wasn't too bad for me overall.

I'm also young and girly and this whole experience was mortifying, but I'm over that now :) No modesty for me anymore. You can't see the seton unless you are really looking for it, mine didn't hang out far enough for anyone to see- and you will have to keep a gauze pad tucked into your bum all the time anyway, so it's not like it's hanging out. You'll probably pull on it accidentally a few times while going to the bathroom or showering and while it is a very STRANGE feeling, it isn't terrible. I really felt strange when mine fell out, I was so used to it being there.

Do you know if you are going to have a long term seton to keep from reabscessing or a cutting seton? I won't lie, when they tighten it, it hurts. But overall it is like a wound, achy for a bit, itchy when it starts healing, but it hurt less to sit with the seton than it did with the abscess.
I'm hoping mine did the job and I'll keep healing but I live in fear that the abscesses and pain will come back. One day at a time.

Good luck! Let us know how it goes.

Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/18/2010 5:14 PM (GMT -7)   
I just wanted to thank you both for your replies.  My other opening is really close to my girl bits so I am most worried about that area and the rubber band.  The doctor said my seton would be long term.  They don't want to cut through the muscle and are trying to delay an Osteomy is how she put it.  Not loving it and am very emotional over the whole thing.  I have had the fistula for years and it was getting a bit better on Humira and then out of nowhere it started up again.  I plan on taking 1 week off of work.  Hoping this will be enough.  Thank you again and I will deff. start posting more.  It is nice to have the support. ~Joanne

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/19/2010 7:23 AM (GMT -7)   
Hi Joanne,

I don't have any answers for you as I have never had a fistula (knocking on wood), but just wanted to welcome you to Healingwell.

Big Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/20/2010 11:08 PM (GMT -7)   
Thanks Nanners, I am having my Seton put in on Monday and will let everyone know how I am feeling next week.  Thank you again for being there as I know many have asked these same questions.  Thanks again to all of you.  I am emotional right now and anxiety is high.  I just want to get the Seton placement over with so I don't have to worry anymore.

Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/25/2010 9:23 PM (GMT -7)   
I just wanted to follow up with an update for those getting Seton's.  I had my Seton put in on Monday and am doing fine.  I have had some pain but the pain med's really help with that.  I am taking it easy but all and all it was not as bad as I was worried about.  Mine is not a cutting Seton and is a draining Seton.  I am sore (esp along the edges of the wound).  I think in a week or so I will feel much better.  I am deff. thankful not to have the abcess pain anymore.  Thanks again for your advice and information.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/25/2010 10:08 PM (GMT -7)   
That's good news, Joanne! I hope you continue to feel better there.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SherBear69
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 2/27/2010 5:57 PM (GMT -7)   
I too have had problems with re-occuring peri-rectal abscess to the left side of my anus. Have had a seton drain in the past, was on remicade for 5 years and had good success with closure of the abscess.  Had to go off of remicade one year ago due to repeated upper respiratory infections and chronic cough. During Xmas week this year, the abscess had reoccured and I waited to have surgery to see if it would heal on it's own... it seemed like it started to heal but in reality , it just found somewhere else to go.  I started having vaginal pressure/pain with drainage from my vagina that was similar to the drainage from the old abscess site. I had an exam under anesthesia on 2/26/10 and now have a ano-vaginal fistula and had 2 seton drains placed. One from vagina to anus and one from the old abscess site to the anus. I don't feel as bad as I thought that I would with these drains. Plan now is to go on Humira in 2 weeks and hopefully these areas will scar and heal.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/27/2010 6:16 PM (GMT -7)   
Hello Satieheart26 and SherBear69,

I am glad you both are doing well! I have had my setons in for about 2 years and they really are doing the job for me. I was having recurring infections and abscesses until I got the setons. Setons are a love-hate thing for me. They really are wonderful and are my friends -- but who wants them!!!

I don't notice my setons now or the guaze I use to pad the sharp knots. At this point, I would feel naked without the guaze. I felt better and better over time as the infection cleared and the inflammation disappeared. I'm hoping you both also have a speedy recovery!

Take care.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/28/2010 1:05 PM (GMT -7)   
Thanks Fall Colors and SherBear for sharing your experience. I am hoping that they are not as bad as I heard. I go back to work tomorrow and am not looking forward to not being in very loose clothing. My opening is right on my underwear line so I need to find some new underwear. I think like you Fall Colors I will be very used to my 4X4's that cover everything. I am hoping for the best and no more surgeries. My doc did mention the flap surgery to me after this so we will see. I have been on Humira for about a year and although it helped it did not cure my Fistula. I am praying for no more that is for sure!! Good luck to you both. Wish me luck at work tomorrow.
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