Hey! I know it's rough, fistulae are so difficult, but I want you to know that it's TOTALLY possible to have fairly normal life with fistulae and setons.
A few months after I was married, at the beginning of 2012, I got a recto-vaginal fistula. I had a seton put in and started Remicade, then we took the seton out to see if Remicade would heal the fistula. It didn't, so about 6 months later we put another seton on. A couple of months after that, I got pregnant with our first kid. Obviously because of location, sex was a bit of a delicate thing that first year of marriage! I was fortunate to have an understanding husband. He kept reassuring me that he didn't think I was gross (I totally felt that way). I had a c-section in 2013 because we didn't want me to tear with the fistula.
In 2014 we decided to try a plug surgery, which failed. We ended up just leaving the seton out at that point because my fistula had healed around it. Basically it's like a pierced ear at this point - the skin is all healed up, just with a tiny tunnel still there. I got pregnant about 6 months after the surgery, and had a c-section two months ago.
So it is possible! I know right now it doesn't feel like it because you're in pain and feel gross, but I promise that over time you'll adjust to the new you. It's hard to accept, but you kind of have to figure out how to become okay with who you are now. It might change, you might find success later in healing, but for right now you need to figure out how to be okay with yourself as you are. One thing that helped me was to imagine the roles were reversed - if my husband had this problem, how would I feel towards him? Or my child?
Just hang in there! You're doing great! If you are still really struggling after several weeks, you might want to consider seeing someone to get some coping techniques. But for right now, what you feel is completely normal for what you're going through. You need to grieve for the loss, go through the grieving process, and then you can begin to heal emotionally.
CD, gastroparesis, fibro, arthritis, GERD
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor