Posted 11/9/2020 11:36 AM (GMT -7)
I'm going to try to keep this short but provide all of the relevant info. 2+ years ago I had an abscess and three setons placed for a large fistula - 3 surgeries in all. Awful. I didn't like the setons and over time had two removed. The third was doable for me, but fell out on it's own. Docs both said "oh well" and I went without a seton for almost a year. During all of the above, I also went on Remicade. Since that time, I've been great. No issues. Then maybe a month or two ago, I developed a lump in the left side of my butt cheek. Not really painful, but I could tell it was there. One MRI later and my doctor tells me the fistula that is still there is branching. No active disease, but due to the nature of the fistula and the location, bacteria is causing spread. It can just happen. He recommends replacement of the seton. Oddly, my surgeon says, "you might be able to go without it and be fine". She also expresses that they discussed upping my Remicade dose at my docs recommendation but decided against that because, you know, cancer. Also, since the quarantine, I've been Pelotoning and I love it and I'm in decent shape and I don't want to give it up and I know depending upon where the seton is, I might have to. So, now the thing is starting to hurt a tiny bit. I've got a call in to my GI to talk through questions I have. I'm a little shook also since he talked about upping Remicade when at the same time didn't think my disease was active. That seems wrong although I otherwise have confidence in him. So... I think I need more information - things like what are the chances it develops into an abscess, what happens if I do nothing and don't get an abscess, that sort of thing. I don't know those answers. Any thoughts, advice, anything would be much appreciated.