Seton in Fistual yesterday

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Irish Red
Regular Member


Date Joined Nov 2007
Total Posts : 54
   Posted 11/27/2008 11:17 AM (GMT -7)   
Hello everyone.
I just had a seton put in my fistual yesterday and thought I would post to see if anyone else needs to chatt about this.
I failed on Humaria and I start my first remicaide infussion Dec. 30th to see if that works.  I was on Remicaide years ago and the fistual went quite for a while but I guess it never closed it up .
 
I decided to get the seton put in because we want to start a family come Jan 2009.  After now seeing the seton (blue string) I wounder how it would ever close.  The purpose of remicaide I believe is to try and get the fistual to close, but how can it when a string is in the middle of it.  I am confussed.
 
Lastly, should I even go on remicaide at this point? My crohn's is in clinical remission (no symptoms- but still active) and if the fistual won't even close maybe I should chance going off Remicaide to concieve?
 
Any comments would be appreciated.
 
 
 

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

 

"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 11/27/2008 2:38 PM (GMT -7)   
I've had several different "kinds" of setons, and my experience is - the only way you're going to understand which kind you have and how it is supposed to heal is to have your doctor draw it for you. It sounds silly - but there's no telling which kind he put in there.

The basic mechanics of the seton, to my understanding and experience, is that it serves to hold open the pathway so that any infection present can drain. Without this seton, the area may abscess. Once the infection begins to clear, certain drugs including Remicade, are supposed to work from the "inside out". So... theoretically the Remicade should help the hole in your intestine to close, thus cutting off the bad goo from tunneling out into the fistula. With the absence of drainage from the intestine, the fistula tunnel starts to seal itself shut, working from the inside layers of the skin to the outer. As your fistula heals, the seton will most likely be pushed further and further out. I had a tube that you initially couldn't see at all, no trace of it but the outer stitch. As the fistula healed, I had to cut an inch or two off the seton as it's plastic tube started to protrude. Eventually the doc said it was "shallow enough" so he just "popped" the flared end of the tube out and it was done. But, as I mentioned, that's just with ONE kind of seton. There are at least two others that I have had that work differently.

Whether or not to begin Remicade when contemplating a family is a very personal thing here on the forum. We have several members that have had healthy Remicade pregnancies with healthy Remicade babies. Some go off all medication and are lucky enough to experience clinical remission while they're pregnant, often to have it flare up after the baby is born. There are soooo many different scenarios.

With the experiences I had when my crohn's was "fistulizing", if I were still experiencing those symptoms... I would probably opt to go ahead with the Remicade treatments and follow the philosophy that "what's good for mom is good for baby". Risking abscess and infection during a pregnancy would lead to antibiotics and god knows what else - most of which would scare me more than the possibility of the Remicade adversely affecting the baby. But that's just me. This disease involves more "soul searching" than a lot of people initially realize. Only you can decide what is best for you and your future family.

I'm sure others will chime in with their feelings and information. I hope you find the answers you need to make the choices coming your way... and I wish you the best of luck with your future family! We're hoping to try again soon ourselves. :-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/27/2008 2:59 PM (GMT -7)   
Hi Irish,

I think Spiders has given you good advice... but then, she always does. She's our resident seton expert!

I just want to add another possibility, which is that they'll leave the seton in to keep your fistula open and draining, but monitor you while you're on the Rem and do occasional sigmoidoscopies. Once things look clean enough inside, they may be able to remove the seton and allow the fistula to heal.

Remember, if you go on Rem and start healing very quickly without your fistula being kept open with the seton, there's a chance that foreign matter will be trapped inside and then infect and abscess.

Hope this helps

Ivy.
Co-Moderator Crohn's Forum.


Irish Red
Regular Member


Date Joined Nov 2007
Total Posts : 54
   Posted 11/28/2008 5:45 PM (GMT -7)   
Thank you so much IVY and Spiders. I feel like I made the right choice now, knowing that if I did not have a Seton in it may not heal properly. Priority no. one is get prego. And I think the seton will help avoid problems down the road.

I know it is vain but it is such a mess down there with the blue string sticking out and connecting from one end to the other. My husband is so good under these circumstances, but I am having a hard time dealing with it at the moment. I will get over it though. I worry about intercourse with this thing. Can I talk about that on the Forum? Won't it pull?

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

 

"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/28/2008 8:13 PM (GMT -7)   
Irish, I'm too inexperienced to answer your question about sex, but I have been told by surgeons that setons shouldn't pull and snag: if they do, they are too loose and should be adjusted (*not* by you, by the surgeons!).

It's bound to be uncomfortable for the first week or two, but if it's still uncomfortable or snagging in about a month or six weeks, please do make sure you tell someone.

Who inserted your seton? Was it a general surgeon, or a colorectal surgeon?

Ivy.
Co-Moderator Crohn's Forum.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/28/2008 8:26 PM (GMT -7)   
I have had a seton in for over 2 yrs. now.  I have intercourse with absolutely no problems.   Go for it...enjoy! yeah

Irish Red
Regular Member


Date Joined Nov 2007
Total Posts : 54
   Posted 11/28/2008 8:51 PM (GMT -7)   
It was a colorectal surgeon. i just had it put in two days ago. I will give it a month before I even try. I am so lucky to have such a great husband : )

I didn't realize it would stay in that long... 2 years I mean. They didn't tell me much about what was to happen afterwards. With CD you just take it as it comes, I guess and no one can give you a timeline or answers as to what may happen down the road.

I am so glad I have this Forum to turn to. Thank you everyone!

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

 

"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/29/2008 10:36 PM (GMT -7)   
Well, they offered to take mine out and see if it would close up, but I chose not to at this time. I have been on remicade for 4 years, and I had another fistula break through in Oct., but it has since closed with my last infusion. So, that is why I'm a little leary of taking the seton out. I had a terrible time with numerous abscesses before the fistula was found and the seton placed....I don't want to go back to the abscess world, so I'm sticking with my lovely red seton. :)

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 11/30/2008 10:26 AM (GMT -7)   
Two out of three types of seton caused me a little bit of grief during intercourse. Even the two troublemakers healed enough over time that eventually intercourse was possible without that nagging little thing distracting me. I think you've got the right idea though - give yourself a little time, and then once you jump in - go slow. Take it easy. You'll be fine. :-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2689
   Posted 11/30/2008 1:42 PM (GMT -7)   
My surgeon had told me I may have needed a seton, if the fistulotomy surgery didn't go as planned. Thankfully I didn't need one, he was speaking of a cutting seton. Where it slowly cuts up the fistula, while it heals from the inside out. Of course having a huge gapping hole from the fistulotomy wasn't fun either. I still think I'd rather have that then something cutting me slowly, just doesn't sound very comfy! Although I know there are different kinds of setons.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


wishiwasalilbittaller
Regular Member


Date Joined Dec 2005
Total Posts : 20
   Posted Yesterday 1:20 PM (GMT -7)   
I had a seton inserted on Monday. From the tiny end I can see it looks like a red elastic band - maybe I can start bungee jumping with it??. I'm not sitting too comfortably still and its draining a lot. I haven't had much information from the doctor about what happens now. Hopefully it will all drain away and start healing I suppose. If you want to e mail me Irish Red to compare notes, please do, as I don't know anyone who has had this done.
31 year old female from Birmingham UK.
Diagnosed with Crohns in Oct 2000
Currently taking Asacol, vit supplements, acidophilus
Not feeling too bad at the mo - apart from the pain in the bum!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted Yesterday 3:29 PM (GMT -7)   
Wishi - I've had the rubber band type that you're describing...

As your fistula/abscess heals, you'll see more and more of the rubberband... and the jokes about bungee jumping will seem more plausible! :-) When I first had it put in, the rubberband was pretty tight across my skin. As it healed, I could sneak one finger in between the rubberband and my butt cheek, then two fingers between... until it was finally time for it to go!

Any nitty-gritty questions or problems - feel free to drop me an email. It's my screen name at yahoo.com.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted Yesterday 3:38 PM (GMT -7)   
And a side note...

Setons don't necessarily have to stay in for 2 years. I've had one in for anywhere from just two months to eight months.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Baseball Mom
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/15/2009 12:12 AM (GMT -7)   
chroniemomx2 said...
I have had a seton in for over 2 yrs. now.  I have intercourse with absolutely no problems.   Go for it...enjoy! yeah
 
This answer actually surprises me.  I was wondering what those who have had them in for months - years did.  My Surgeon said absolutely no intercourse nono   while the Seton is in place.  :shrug:
 
I guess each Dr has their own theories.
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