HELP! Scheduled to have Seton inserted next Mon...

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katbar27
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/13/2009 10:11 AM (GMT -7)   
Hello everyone,

I am new to this forum and am suffering from a fistula and fissure.

So far what I have read has kind of helped me understand what a Seton is, but I'm still quite nervous about this procedure coming up on Monday 4/20/09.

I was just wondering if anyone had any ideas of questions that I should ask my doctor before the surgery. Or maybe someone can give me a run down of what all is involved.

This is the basic story of how this came about and what my Dr. has told me:

I had 2 REALLY painful anal fissures in 2005. I did not know what was going on for MONTHS and I suffered terribly for wayyy too long before I did anything about it. I finally was diagnosed and given .02% Nitro which seemed to have taken care of the problem. Shortly thereafter though, I formed a very large sore on my butt cheek. It would become VERY painful and then it would leak and feel a bit better for a few days. The process would repeat itself over and over. I thought it was some sort of hemorrhoid that was in the wrong place and just dealt with it for several years now. :(

I finally went to the doctor last week and was told it was a fistula as well as another fissure. I was also told that I need surgery requiring anesthesia and that the Dr. will go in and evaluate the situation and put a Seton in at the same time. The dr. told me that some ppl choose to leave the Seton in instead of getting the 2nd surgery. She told me that if I choose this option, I would have to have the Seton in for the rest of my life???!!!! confused I am VERY frightened by this thought and I don't really understand how this "string" is attached on the outside and how far it will "hang" out of my butt, etc... VERY scary thought! Is this Seton the ONLY remedy at this stage? Is there something else that can be done 1st? How do I go to the bathroom? How do I wipe? Does it hurt? How much pain will I be in after the surgery? How long is my recovery time? These are some of the questions that come to my mind.

The other option for the 2nd surgery didn't sound much better, as she told me most likely they would have to cut my sphincter muscle and that that COULD (and most likely WOULD) cause me to have incontinence the rest of my life!! ?? confused Is this accurate?? This sounds VERY disturbing!!

Can someone fill me in a little more about this?

PS - I'm having an Upper GI Small bowel follow through done this Friday to check to see if I have chrones. Which is also EXTREMELY scary to me! I have heard HORROR stories about this disease! mad

Any help is GREATLY appreciated!

Thanks in advance,
Katbar27

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 3:37 PM (GMT -7)   
My biggest suggestion is this: you've dealt with this pain and suffering for a long time, so don't let doctors rush you into ANYTHING that you are not comfortable with. Docs have a knack for making us think their word is the be-all-end-all, so just remember to tick to your own clock as much as you can.

In relation to that, I would get at least ONE other opinion on the situation before committing to ANY surgery, be it the first option or the latter. Both are very serious situations, and to be honest - they do not match up with my seton experience or what I was told at all. Every fistula and abscess and fissure situation is unique, so the doc may really be offering you the best options - but I would ask another specialist to be sure.

Is the doc that you're dealing with a colo-rectal surgeon? Or is it your GI? I recommend finding a good colo-rectal surgeon to evaluate your situation - and if that's who you've already seen, then I still recommend a second opinion.

I have had several different setons/drains over a two+ year period, but NONE of them required me making life-long decisions before hand. I left a drain in for more than a year I think, but I never had to have surgery to have any of them removed, and there certainly was no threat of having to leave the stupid thing in forever. That being said, there are a couple regulars here who chose to leave them in because it was just easier, which I totally understand. For me, a series of drains followed by Remicade treatments cleared up my troubles in a heartbeat, and while I still have flares since stopping Remicade - I have NOT had any of the fistula/seton complications return.

Best of luck to you, whatever you decide!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 3:45 PM (GMT -7)   
One more thing - the setons and complications on my bum were indeed because of crohn's, but they missed the diagnosis for over a year because there was no sign of crohn's in my colon. Crohn's can manifest outside of the digestive tract without any hint of trouble on the inside lining. Please, please make sure that you are in good hands for these exams... diagnosing crohn's requires a doc experienced with crohns. Crohn's definitely has its horror stories, and I understand how scary it is... but if these fissure issues are the worst you've experienced thus far then maybe you have a mild case of crohn's if you have it at all. There are so many degrees of severity in this disease... not all of us have to go through the worst of the worst! And most of us still lead normal and happy lives regardless.

Don't worry too much about the crohn's part... just make sure you are in good, qualified hands, and make sure that you have a doc that you can communicate with. You should never have been sent home with so many unanswered questions from the get go - it makes me so mad. Doctors expect you to know what to ask when they put you on the spot, but really they should be answering the questions that you don't yet know HOW to ask.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!

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