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Crohn's Disease
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Posted 8/23/2016 8:30 PM (GMT 0)
I had a perianal abscess in December that turned into a fistula. They put setons in to drain and have since taken them out but on last MRI they said there is a branch that goes up my labia to the pubic bone. They still say that it isn't crohns but how would it tract so far and not be is what I say. I am completely upset after having 3 surgeries so far and them wanting to do a 4th that potentially puts setons in along the tract up my labia. I do not want to risk damage to my female anatomy and currently do not have a rectovaginal fistula. Any thoughts or experiences would be helpful! Coping with this is life changing for me. I'm a young and active female. HELP!
Posted 8/23/2016 10:54 PM (GMT 0)
Oh ouch ouch ouch! That just sounds painful to me. I have a recto-vaginal fistula, so I get how all of this is so complex. I have a few questions:
1) who is the doctor managing all of this? Is it a regular surgeon, a colo-rectal surgeon, an OB, etc.?
2) have you had a colonoscopy to determine that this isn't Crohn's? Or at least seen a GI? Do you have any Crohn's like symptoms at all?
3) how long would they plan to have the setons in? Would these be draining setons or cutting setons?

While I totally understand how scary it must be to risk damage to female anatomy, to just not do anything would risk abscessing it and then have major damage later on. But I don't know if just sticking in setons is the right move either until I hear back from you about my other questions.
Posted 8/30/2016 11:12 AM (GMT 0)
Thank you for your reply! I have not yet had a colonoscopy. My colorectal Dr is still saying no to CD. Although I'm not sure how he can definitively rule it out without one. I've seen 2 colorectal surgeons, a Urogyn and 2 GYNs. No one knew what it was and kept saying it was too far up to be related to the original fistula. I've been asking since March. And wallah...this last MRI in August says yes it is. So it's a 1) colorectal DR managing 2) no colonoscopy yet but I'm considering to rule it out and 3) I'm not totally sure what type of setons since they call the surgery an exam under anesthesia and will see what's going on first and determine. I'm completely upset and frustrated. Another colorectal said they would leave it until you have to do something about it and take antibiotics and then if I need surgery they would do a fistulotomy and only leave a seton down by the anus where the original fistula started. Uggghhh!!!

Post Edited (KJ) : 8/30/2016 5:21:34 AM (GMT-6)

Posted 8/30/2016 11:20 AM (GMT 0)
I forgot to add that I do not have any CD symptoms. But I have read and been told that you can have a perianal form of CD as a precursor to it. Here is a family history of CD.
Posted 8/30/2016 11:31 AM (GMT 0)
I think you need to get a colonoscopy done. I know they keep saying no Crohn's, but you'd be amazed at how many people come here saying that, then a year later it is Crohn's after all and the fistula was just the first sign. That's not saying that IS what you have, but your body doesn't just make holes in itself for no reason. Find a GI who will take you seriously enough to at least do a colonoscopy.

I wonder if they would prescribe Remicade even without a Crohn's diagnosis......no idea.
Posted 8/31/2016 6:31 AM (GMT 0)
I agree, you really should get a scope done just to be safe. It's good that you aren't having a lot of other symptoms though. I actually was quite sick already with daily diarrhea and pain, PLUS having the fistula and they still told me they didn't think it was Crohn's! I went many years after my fistula surgery not knowing I had something else wrong with me. So yes, it happens! Especially when we are talking with surgeons or family doctors that just won't put two and two together it seems.

I hope you get some answers soon, and I hope that for your sake that it isn't Crohn's! Sounds like you've gone through enough already! Ouch!
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