Three months and still in pain from seton

I had a flare starting in February of my large intestine-located crohns. High dose prednisone was doing nothing. By April I had extreme rectal pain along with my typical symptoms and it had turned out I had an egg sized abscess and a fistula. They performed a seton surgery. I have two setons currently. For at least a month after the surgery I had terrible pain at the seton site. I had been on iv antibiotics and steroids in the hospital which stopped all the intestinal symptoms but the extreme pain remained. The doctor said it was just the inflammation and the abscess refilling and draining. They started me on remicade. First two doses I noticed a significant decrease in pain and drainage. I thought the third dose would be the final thing to close them. But I noticed zero difference from the third remicade. I didn't worry too much though because I wasn't worse or anything.

But then about three weeks later I started having bad pain again. I had just started a new exercise program and my body often flares in response to exercise. I also found out I'm pregnant so I don't know if that messed with things. Anyway, I had another abscess but the CRS pushed on it and said that luckily it is connected somehow to the same tract because it drains out the seton when she presses it. So she left it alone and put me on a month dose of flagyl.

The pain has gotten better but it's still there after three weeks on flagyl. I can't sit or stand for long at all. If I lay down I don't have much pain. But Im young and I have a one year old. I can't just lay down all the time. And this morning sickness on top just makes everything worse. Then today I looked and noticed around the setons there is a thick red raised ring. I have no idea what this is. I think it may have been there before but it's worse now. Anyone get this? Anyone have any advice? I get my next remicade in three weeks. I'm just exhausted and tired of being in so much butt pain all the time. It seems like I've been waiting it out for months and I read about all these people who don't even notice their setons. I don't understand what's wrong with me. I don't know if remicade isn't working anymore. I don't know what to do.

could it be infection? is the red warmer than the surrounding area? do you have a fever at all?

Well the area had always been warm the entire time since I had the surgery. The doctor just says the abscess cavities are still really inflamed but that it is okay because they are draining properly. And I'm on the flagyl for infection. I don't have a fever- just a lot more pain all of a sudden. I'm wondering if it could be a skin infection. What would they do though if I'm already on an antibiotic?

Unfortunately as long as you have setons in, it's impossible for your fistula tract to close because they're keeping it open. It's only after getting it removed that it can finally close. Remicade or other biologics should eventually stop it from draining, though. Within a month of being on Humira I stopped getting any drainage whatsoever.

I would definitely think that the new pain you're getting is a sign of infection, or that the bacteria never really died down in your abscesses. So it's a good thing you were put back on antibiotics. I was actually on a combination of Flagyl/Cipro for eight months. (Which sounds brutal, but I think it helped.)

I definitely noticed my seton and hated having it in, but I knew it was for the best (at first)... That the area is inflamed around it is still probably a sign of inflammation/irritation. I don't think you need to do anything differently -- if anything you could ask your doctor about being on a Cipro/Flagyl combination, and maybe checking for antibodies to Remicade and asking about switching to another biologic if it doesn't seem to be working for you.

Good luck with everything! :hug:

Elizajp said:

I had a flare starting in February of my large intestine-located crohns. High dose prednisone was doing nothing. By April I had extreme rectal pain along with my typical symptoms and it had turned out I had an egg sized abscess and a fistula. They performed a seton surgery. I have two setons currently. For at least a month after the surgery I had terrible pain at the seton site. I had been on iv antibiotics and steroids in the hospital which stopped all the intestinal symptoms but the extreme pain remained. The doctor said it was just the inflammation and the abscess refilling and draining. They started me on remicade.

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Hope your seton pain subsides soon.