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I haven't ever really talked to anyone outside of my close family and friends about this. I was diagnosed with Crohn's disease in 2010, a few months after my wedding. My GP was worried when I lost 70+ lbs in less than 6 months, and I couldn't keep food down. I was sent to a GI, and diagnosed with Crohn's after a colonoscopy. 6 months later, after a month on Prednisone and Azothioprine, I had a blockage, resulting in a surgery to remove a foot of my small intestine. I went in and out of remission for a few years. I tried Azothioprine, then we added Cimzia. That didn't work, so we tried Humira. Then, the abcesses started. I went to my GI who referred me to a surgeon. They both thought it was a one-off. I had 7 or 8 in 2 years. Finally, I was referred to a new CRS. He found that I had scar tissue that suggested the abcesses were caused by a fistula. He did "exploratory" surgery in Feb 2018. When I woke up, I had a seton and a new diagnosis of perianal Crohn's disease. My GI started me on Inflectra. I had the seton for about 7 months, all of which were excrutiatingly painful, and then my CRS took it out after 3 infusions. A month ago, I noticed a sharp pain while working. I went in, and my CRS and GI ordered a bunch of tests, MRI, stomach ultrasound, fecal test, blood tests, and CT scan. My GI said my Crohn's is in remission (yay, even though I haven't had a solid BM in over a decade and use the bathroom 15+ times a day), and my CRS said he didn't see anything. He thought I had just "walked too much". Less than a week later, I noticed a tender bump right over the abcess and seton scars. After an in-office ultrasound of my buttcheek, my CRS said I had an abcess and he wanted to put the seton back in the next day. I had a panic attack in the hospital and begged him not to put that horrid seton back in. He agreed and just drained the abcess and did a partial fistulectomy. I went home with a hole the size of a quarter. It's healing faster than normal. I went for my post-op and my CRS said he still thinks I should put the seton in. He said that I just have to accept the pain. I'm having a really hard time accepting that the seton is my only option, and that I'm just going to have to be in continual pain for an indetermined amount of time. There must be other options, right?! Sorry for the long post... I don't know anyone with these issues and I've been holding this in for a long time.
Reply posted for Trmpt241.
I know my Message is late but I can relate a bit. I was put on Humira and it made things worse for me. My hairs started falling out (every hair on my Body), my Nails got brittle then broke off and I was getting bruising from the injection sites. Anyway, I told my Doctor about it but he kept insisting it'll get better but I told him no! I just refuse to believe that Humira is my ONLY choice. I am now looking for other Meds to try. Much luck to you!
Reply posted for charbs.
I have perianal fistulas with a Seton. I used to have 2 but they removed one. It doesn't cause me much pain. However I did have an abscess last month and that hurt quite a bit more than the Seton.We all feel pain differently so we just have to weigh the pros and cons of having the Seton procedures or passing it up. My advice is to get a second opinion.
Reply posted for Trmpt241.
I’ve had multiple fistulas after a proctomocollectomy. Had to have emergency surgery for a bowel obstruction, and a number of setons put in. Without the drains, the fistula would eventually get clogged and fill up like a giant pimple. It was excruciatingly painful, and when it eventually popped it looked like a gunshot wound. I have pain on a daily basis, but it’s not near as bad as before the drains went in.