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Where is/was your seton/abcess

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Crohn's Disease
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Posted 3/29/2010 11:44 AM (GMT 0)
My surgeon told me that my anal fistula is "unusual".  I had it straight for 9 years - doctors back home didn't believe in anything but draining it.  Somehow it managed to heal for about 4 years (must say the best 4 years of my life since my diagnosis) but it's back and I have been battling it the past two years.  So my new surgeon down here in VA says it is unusual because it is sort of a horseshoe fistuala that went up to my tailbone area and shot down only one butt cheek to form an abcess there but the other side didn't shot down the other butt  cheek it just decided to abcess up near my tailbone.  My doctor says it is strange but I find that hard to believe....does anyone else have something similar? Over a year and a half ago he put a draining seton in the lower abcess and that worked fine until he took it out to put in a worthless "plug".  Now he has put a draining seton back into the lower one and a new draining seton that goes up to the abcess around my tailbone.  It is more painful that the abcess.

I would love to find out if anyone else has a similar fistuala track?

Posted 3/29/2010 12:25 PM (GMT 0)
I don't really know which way mine went...I was able to have two removed at one point but lived with the other 3 for more than 7 years:(

When I only had one it miraculously closed for about 3 years but it came back and then some....I hope you can find some relief, how recent was the last placement? I would think that if it is more than two weeks something might be going on...is the knot on the outside of the painful one?
Posted 3/29/2010 12:34 PM (GMT 0)
They put the two new setons in February 10th which is why I am pretty sure this is not residual pain from the surgery. The pain is the same as when the abcess was there. The one problem I kept having over the weekend was the knot was slipping down and up my rectum making it problematic for BM's, even with D. Tylenol not doing anything and I was going to get Tylenol PM just to get some sleep but there are no Tylenol's at the store, most likely due to recall. My husband was so desprate he bought me the really really strong Aleve, which I know I am not supposed to take. So I am going to try to call the doctor this morning and give him a couple options - up my flagyl and/ cipro just in case infection is worse than he thought, put me on something for pain and I will give it another week or two at which point if he doesn't snip it an pull it out I will.

I think he is at a loss as to what to do because he is not used to a seton so high. Last week when I visited he just kept saying I don't know why you are in pain, to which I just stared at him and he said it again until I stopped peering at him.
Posted 3/29/2010 12:46 PM (GMT 0)

Mine was very strange too, apparently- went undiagnosed for years, not for lack of trying on my part.

I'm pretty sure mine started about 1/2 way up the rectum- I had the most horrible vaginal/rectal pain for years. It literally hurt to breathe. I had a "lump" they could feel vaginally but they thought it was endometriosis and I even had numbing shots put in that area- they didn't work because it was the abscess. So then we're pretty sure that the physical therapy I had been going to for vaginal pain (manual and e-stim therapy) pushed the abscess back around my tailbone to the other side, where it formed another abscess and a fistula, which opened just at the back of my anus. I had a lump the size of a piece of chalk from my tailbone down. They STILL couldn't find the thing surgically and plugged the fistula so it just opened back up just inside my rectum. I continued with these surgeons until they finally found what I was talking about and my seton was placed and they also incised the abscess that was higher up in the rectum. That one healed (finally, it was amazing to not hurt there anymore) and my seton fell out a while ago. So I guess mine was up around the tailbone too- I even had a "tailbone distraction" at PT which made me want to DIE. This was all before they realized what was really going on.  I'm still healing and not convinced that I'm all better yet, but my surgeon wants to wait a few months before we make any decisions. Said my surgery site has got granulized tissue there, which is a good sign of healing tissue... so that's my story in a nutshell. I was told over and over I was atypical, I was "zebras not horses" and that they still can't quite figure out what was going on with me... Let me just say it is NOT good to be unique in the medical field...

Posted 3/29/2010 12:53 PM (GMT 0)
melinds~if he 'doesn't know' can you find another C/R Surgeon to look at it?
Posted 3/29/2010 12:59 PM (GMT 0)
melinds....mine was compeltely in the perirectal area, but I sympathize with the pain. It sounds like you may have muscle involvement...at least it is another thought to pursue. I do think you might want to see another colorectal guy who is more familiar with Cd related fistulas. I lucked into a great guy who knew about all the possibilities (said mine was the best you could have as mine was all cheek tissue and no muscle)
Until you get more care, spend a lot of time on a warm sitz bath. It was the greatest relief of any pain I had.
Posted 3/29/2010 1:09 PM (GMT 0)

Melinds - can I ask you if this bleeds?  I just came home Friday from a 9-day hospital stay with IV steroids to avoid surgery for a terminal ileum stricture.  I avoided the surgery but a couple days before I came home I developed this knot at my tailbone that has been bleeding (just a small amount).  I was wondering if this is how a fistula is?

Posted 3/29/2010 1:17 PM (GMT 0)
ALgirl - A fistula is a track that occur anywhere along the digestive system. I have had them from my small bowel to my bladder and from my small bowel to the outside of my abdomen. This one is an anal fistula and the openning is about 3 to four inches inside the rectum. The tract goes up from the rectum to about where the top of my butt crack ends (near my tailbone) and for me it formed an abcess there. If there is no where for the pus to drain it forms a pocket - mine was the size of a baseball - they will put a drain in and it drains greenish yellow pus but I don't ever remember blood. Is your knot painful? You may want to call your doctor to describe it. I hope it's nothing bad. Good luck with your recovery.
Posted 3/29/2010 4:15 PM (GMT 0)

Thanks!  Yes, it is very  painful.  it started out with clear fluid but now seems to be clear fluid with blood tinge to it.  I left a voice mail for my doctor's nurse to call me back.

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