New fistula owner in this forum

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patsybell
New Member


Date Joined May 2010
Total Posts : 13
   Posted 5/11/2010 2:04 AM (GMT -7)   
Hi all - I had surgery for a perianal abscess last January. My surgeon said I had a fistula and she put in a thread seton that I started tagging a couple of times a day once the opening from the abscess healed.

Things were occasionally painful and often quite bothersome but bearable at the beginning. They have gradually degraded and I'm at a point where I feel stuck.

I've been reading through this forum and found many thoughtful and informative postings about my condition. I'm hoping I can find some help and support moving forward.

At some point after many weeks my original seton broke. When the surgeon looked at it she said she was puzzled because that *never* happens. She said the fistula was still there and she had to re-thread me, as it were. She did it right there in her office, if anyone can imagine the pain is the people in this forum.

The new seton was much thicker, actually it consists of more than one thread wrapped around together. The daily pulling of this new seton was more painful, and not only that, I started to feel a lot of pain on and off during the day, which had not happened before. The "on" pain periods increased in occurrence and length, and the pain felt during tagging increased too. To add to this, I can't see the progress in getting this seton out. It's hard to gauge oneself, but when I look at it in a mirror, the in and out holes of the thread look as far apart as they always were, and it seems to me that if the loop were coming out, that they would get closer.

In any case, the pain became unbearable, I could not sleep sometimes, and OTC painkillers did not do much. My doctor suggested I take 600mg ibuprofen x 3 times day for 3 days which resulted in stomach upset and diarrhea. Really not what I needed down there. This just did it. Now the area has been so sore that I can't stand the pain of tagging the seton. I tried but it sends a shot of pain that goes all the way down my leg to my foot.

Today I called her office but she's in surgery for 2 days so another doctor saw me until she can see me on Weds. He thinks I have a strong reaction to the silk (the thread), that it should probably be replaced with a rubberband, and suggested I use a cube of ice in the area as pain reliever. He also gave me vicodin, which I have not started to take yet because he scared the heck out of me about addiction. The cube of ice helps for about 3 min. I started to joke with my husband whether I can melt ice cubes with my bum faster than the refrigerator can make them. Hot sitz baths are much more helpful as I have read in this forum and experienced myself.

Right now I'm a wreck. I'm started to get depressed about this pain that has been going on for the 4 weeks since the new seton was put in. I think it would be easier to bear if at least I could see any progress. I'm beginning to think my surgeon screwed up this one and there's something wrong she can't see. I've started the process of seeking a second opinion. But from who? I'm wondering if it makes sense to see another general surgeon or if I should go directly to a colorectal one?

Signing off for right now in pain and confused but grateful for all your posts and support in this forum

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/11/2010 6:44 AM (GMT -7)   
I do not have experience with fistulas, but from being a member here I have always heard its best to go to a colorectal surgeon. They are more on top of these types of issues.

Please go ahead and take the Vicodin. As long as you take it as directed you will be fine. No need for you to suffer needlessly. I take 1/2 tab of percoset 3 x's a day, to just manage my chronic pain. I am not dependent on it all, if I miss a dose I never have issues.

Good luck!
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

patsybell
New Member


Date Joined May 2010
Total Posts : 13
   Posted 5/11/2010 8:29 AM (GMT -7)   
Hello Gail*Nanners* - Thanks for the encouragement. I'm sitting here with my breakfast and my pill of vicodin.

seraphina
Regular Member


Date Joined Apr 2010
Total Posts : 39
   Posted 5/11/2010 9:40 AM (GMT -7)   
Pasty,
 
I have to agree with nanners, go to a specialist if you aren't already doing so.  I initially went to a General surger for a perirectal abccess and he made the incision really high and I kept telling him it wasn't healing, finally 5 months later I found a colorectal surgeon who put in a seton and I'm having surgery in 15 days.  Do you think maybe where the knot of the seton is at is rubbing you raw?  If I don't have my knot in just a right place with gauze, it kills me and starts bleeding.  My surgeon told me to find the best place for the knot and leave it there.  Mine is the rubberband type but they can't do the tightening because of where the initial incision was placed.  Yours might be different but don't feel bad getting a second opionion, I did and I have to say I'm very please with this new Doctor.

patsybell
New Member


Date Joined May 2010
Total Posts : 13
   Posted 5/11/2010 10:13 AM (GMT -7)   
Seraphina -

It's not the knot, I know, because my knot is out there to the side and does not bother me at all. The pain comes fromi inside, either my body is saying "sorry I can't deal with whatever material this thread is made of" or something has gone wrong inside that is causing this unbearable pain.

I have to say though, I followed nanners advice and took my vicodin earlier with breakfast and I'm feeling quite a relief right now. Definitely working on getting a good colorectal surgeon.

Good luck with your surgery!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 5/11/2010 4:07 PM (GMT -7)   
patsybell~please DON'T go back to that doctor!!! Crohn's patients should not be prescribed/take Ibuprofen since it can cause some complications/bleeding:(

Like the others said, a ColoRectal surgeon needs to be involved...I have never had a C/R Surgeon do anything with my fistulas in the office...for Crohn's Pt's mine always take them to the OR for outpatient surgery.

The seton is to keep the track open so the infection can drain....not close the tract. A cutting seton has a different job but it doesn't sound like that is what you have. Pain is normal for a few days but should subside after that.

Keep us posted!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Sarah Emma
New Member


Date Joined Jul 2010
Total Posts : 5
   Posted 7/31/2010 2:25 AM (GMT -7)   
HI
I agree.  I would definatly see a Colorectal Surgeon as they are experienced with these things.  I ended up having  two lots of surgery because the general surgeon who did the first operation didn't understand fistulas.  I had my seton put in in may and I am still trying to get used to it.  The knot has now come out and rubs me raw.  I am wedging it inbetween a foam dressing cut two halves and placed on either side.  This seems to work but when i walk any distance the knot moves around and really hurts. Does this get easier ?  What do you mean by tugging the seton ?  I have not been told to tug mine.
 

patsybell
New Member


Date Joined May 2010
Total Posts : 13
   Posted 7/31/2010 9:54 AM (GMT -7)   
Hi Sarah Emma -

Sounds like what you have is a draining seton. I had a cutting seton, which is why I had to tug on it so that it would make microcuts to my sphincter muscle every day. That was what the general surgeon did and wasn't working except for causing me an awful lot of pain. I have since seen colorectal surgeons that removed the seton and my fistula seems in "remission". They can't see the internal opening, the external one has closed, and I'm doing OK. There's fibrous tissue where it used to be and we're just watching it to see what happens as it looks good enough for the surgeon to wonder whether it will mend on its own. She is keeping an eye on it, I see her from time to time, and in the meantime, no OR and no more setons for me. I'm crossing my fingers... Have you told your surgeon about your discomfort with the seton? Maybe they can use a different material or make it longer so that it's easier to keep the knot out of the way?

Take care,

Patsybell

Sarah Emma
New Member


Date Joined Jul 2010
Total Posts : 5
   Posted 8/5/2010 1:11 AM (GMT -7)   
HI Patsy Bell
Thank you for explaining the difference for me.  I am seeing the surgeon again in two weeks so will have word with him. At the moment I am folding the seton inbetween a foam dressing to stop it from rubbing. Fingers crossed that you don't need anther.
Fingers crossed for you
Sarah Emma
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