I have had a fistula for over a year now. I have had three seton surgeries to rework the setons and my final one being about a week ago. I am on an alternative immunotherapy treatment that is working, but very slowly. The doctor said she does see gradual healing.
In the meantime, I feel like my days are so unpredictable. One day I will be able to manage with little drainage or pain. And then, usually if I go to the bathroom more than once per day, I am in immense pain the rest of the day.
This just doesn't seem right to me. I know it's not an abscess as I had no abscess when they went in last week. Things are draining properly. I would understand if I was having a full blown flare and going like 10 times a day- but this is just the slightest fluctuation- if I go twice instead of once my day is completely ruined. What does this mean? Does this mean I'm flaring? I have no signs of a flare. But I also don't understand why so many people say setons should make things not hurt and yet I am in so much pain half the time. It has been this way for most of the year. Remicade gave me about a month of relief last summer until I developed antibodies. And no I can't take other biologics. Like I said, I have a long term treatment plan- but this pain is just really getting tiresome. I don't know if I need a second opinion or something. I just don't see why there is always so much pain. I'm doing the sitz baths multiple times a day every single day- I'm doing all that stuff. But if I go to the bathroom more than once, no matter what, my day is ruined.
In the meantime, I feel like my days are so unpredictable. One day I will be able to manage with little drainage or pain. And then, usually if I go to the bathroom more than once per day, I am in immense pain the rest of the day.
This just doesn't seem right to me. I know it's not an abscess as I had no abscess when they went in last week. Things are draining properly. I would understand if I was having a full blown flare and going like 10 times a day- but this is just the slightest fluctuation- if I go twice instead of once my day is completely ruined. What does this mean? Does this mean I'm flaring? I have no signs of a flare. But I also don't understand why so many people say setons should make things not hurt and yet I am in so much pain half the time. It has been this way for most of the year. Remicade gave me about a month of relief last summer until I developed antibodies. And no I can't take other biologics. Like I said, I have a long term treatment plan- but this pain is just really getting tiresome. I don't know if I need a second opinion or something. I just don't see why there is always so much pain. I'm doing the sitz baths multiple times a day every single day- I'm doing all that stuff. But if I go to the bathroom more than once, no matter what, my day is ruined.
