Long post... need advice... fistula issues

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.

I'm not sure why you think upping the Remicade dose and cancer are connected....do you have a history of cancer or something?

I've been on 10 mg/kg every 6 weeks for over 6 years now (8 total on Remicade). It didn't heal my fistula, but it definitely stopped any spread or anything. I'm able to be without a seton, but that is because mine is Rectovaginal so it has two places it can drain from (almost like how a pierced ear has two ends).

In my case, the seton was left in so long that the fistula healed around it like an earring in a pierced ear, so when we removed the seton it never healed closed, but it doesn't get infected or anything.

IMO, a seton is much preferred over c. diff. from frequent antibiotics due to abscess - or worse, an abscess that ruptures and goes septic. I almost died from an abscess that went septic, and I've had c. diff. 8 times. I became resistant to abx for it and had to have a fecal matter transplant. C. diff. can take months to recover your body's strength each time, and has a fairly high fatality rate in at-risk patients.

I'm not trying to tell you what to do or say that it's not that bad - fistulas, abscesses, setons....they all stink. Just trying to offer some scenarios that you may not have thought about.

Stevo, sorry to read about what you have going on. I am sorry that your surgeon scared you. Quite honestly, he spoke about something he knows little about. Your gi is the dr you need to discuss Remicade with & no one else. I was on 10kg every 4 weeks & that is what worked for me. We have another member on here that has been on it from when the trial first started, 20 years, that's a long time.

Scifi gave you some great information. Take care.