I do not know exactly what fistulotomy is. But here is a link to a related topic:
Hope it helps a bit. Take care.
Diagnosed with CD in 1994;
In 1994 I was treated with Pentasa of no avail. Have being treated with Chinese herbal medicines for over 10 years.
WhatDoIDoNow, welcome to the board.
I have been through precisely what you describe. I had a per-anal abscess which went on for over a year before I finally took it upon myself to find a decent surgeon. I am glad you have at least made the first step. Unfortunately, because my condition had been so neglected, my abscess and the underlying fistula were HUGE by the time I was operated on.
My fistulotomy recovery was very painful, and the wound it left was huge, I cried and nearly passed out when I saw it! But gradually it seemed to be getting better. Then, about 4 weeks after the fistulotomy, I started having extreme pain again, with walking, sitting, lying down, everything. I was working this whole time too so it made getting on the bus, sitting all day and walking to work excruciatingly painful.
I went back to see my surgeon. I was in pain again and it was getting black again underneath the skin and I knew something was up. And then I got the news I was dreading to hear, the abscess was making too much infection for it to heal properly, and the fistulotomy was only partly successful. I had to have a 2nd surgery – just when I was thinking ‘it can only get better from here!’. I was devastated. I felt like I was in a hole and I didn’t want to let anyone in. I was absolutely miserable.
I had my 2nd surgery, and they inserted a mushroom catheter into the wound. The tube they inserted came out of the hole which was left from the fistulotomy. The mushroom drain is a tube which is stitched in, and at the top of the tube there is this mushroom-shaped thing which keeps the drain in place. It helps facilitate drainage of the remaining sepsis.
The mushroom drain is very uncomfortable but thank god it does its job. I had to have it in for about 4 months. But finally it came out. and now I am on the road to recovery. I had to wait 12 weeks for approval for remicade, and it made all the difference in my health. This year has been hell for me, and very painful, and I know just what you are going through. I hope you get to see another surgeon soon to get some answers. The sepsis you have draining sounds like mine was before the fistulotomy, thick, yellow/bloody and bad-smelling. It is because it is infected. Please let us know how you progress and if you get any answers, and I hope this has been somewhat of a help. I know that you can get through this, it is trying but it can be done. I am now feeling 110% better and things are healing nicely, I still have my seton in but it should come out in December.
Things will get better, I promise you. Hope you’re feeling a bit better today,