Hey sorry you had to join those of us with fistulas. I know what you are saying about the first one being a sort of stunning experience. I had one, but it was much simpler than yours. I couldn't fathom 12 years and then a new symptom shows up. I can't answer all of your questions---and your situation is different--but I hope this helps.
1. I've been told this is an out-patient procedure/surgery - either a spinal, epidural, or general. I don't like the spinal or epi options and would probably select the general, but also heard about versed (sp?) being an option - I do NOT want to feel or remember this. Any thoughts? I had general becuase I had a previous spinal issue due to back surgery.I remember nothing and it was over very fast. However, I stayed there later than I would have with local sedation to "recover" from being out of it.
2. What is the recovery time?... my surgeon implied a quick recovery and back to work. I'm planning to be off for at least 4 days (Th (surgery day), Fri and the weekend). However I spoke with someone the other day and she said it took nearly 2 weeks to feel back to 'normal' and apparently 4 days before she could sit again. I sat again almost right away, but I had one seton and "the best place you can have a fistula" per my nurse. I had the placement on Th and was working Monday. I did bring a cushy pillowbecuase I have a desk job. I just made sure to get up often--which is also good for your vision and back.
3. Can you feel it coming out your anus? Does it hurt? Does it get better with time to where you don't notice it anymore? I pretty much never noticed the seton except brushing it occassionally when I wiped. I didn't have any pain that I didn't have with just the fistula. I never even noticed when it worked its way out and was gone.
4. How long did you have them in place? Mine was in a year. I had limited muscle involvement, but my surgeon still adjusted the loop size in tiny increments so I never had to consider muscle damage. I went to the doc every month or 6 weeks.
5. Were they effective in healing the fistula? I thought this was the greatest thing for me. I had no meds involved with the fistula and it has not come back ----yet---may have a new one now
6. Was Remicade used in addition to the seton? I did not use Remicade, but that was my choice for other reasons. I have heard others with wonderful responses to Rem....check any other Remicade posts for info
7. Did they reoccur after the seton was removed? How long after removal did the fistula's come back? I'm concerned about recurrance because I don't want to feel like I put myself through this for nothing. Per my doc, once you have a fistula, you will keep getting them. The Rem is supposed to help prevent them though.
8. Has anyone gotten pregnant and had a vaginal delivery after having fistulas? I have two babies (1yrs and 3yrs) and would like to have a third if possible. No Kids for me so I can't help you here
9. Has anyone had this done and when it didn't work ended up with an ostomy? I don't have a colon and my rectum has caused me troubles in the not so distant past, so I'm seriously considering this option, but would like to postpone it as long as possible, at least until I'm done with babies. I know you can have babies with an ostomy, but with the recovery time I think I would choose to be done having babies.No Kids for me so I can't help you here
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]