My experience with abcesses, draining setons, and cutting setons - 4 surgeries

Hello everyone,
I had my first abcess almost a year ago when I was 17 years old. I was experiencing pressure around my Anus as well as puss leaking from the inside of my anus. I went to my doctor and she told me it was a hemeroid, which was completely false. One day I was in a lot of pain and went to the ER where I saw a colorectal surgeon. I had the abcess drained and a rubber seton placed. In less than two weeks my abcess returned, more painful than ever. I was scheduled for another surgery. My surgeon at the time inserted another seton which provided temporary relief but yet again after 3 weeks my abcess was back. I was devastated and just wanted to enjoy the end of my senior year so I lived with it for about a month. It grew and the physical and emotional pain it brought me was immense. I couldn't sit the way I wanted to in class. I couldn't participate in many activities. I walked like a duck due to my discomfort. I was 17 and I just wanted to live my life as most of us feel on this forum. I went in for my third surgery in 3-4 months and this time my colorectal surgeon cleared out all of the tissue that was infected as well as a rubber seton placement. I woke up to a hole/void the size of a small orange next to my anus. Completely devastated and in complete pain but in about a month I could resume normal activities. I lived with my rubber seton for about 4 months as I went to college. I would play with it making sure no stools were left, used a shower head to clean after bowl movements, applied flagyl constantly, and placed gauze in the area. The area was stable, the abcess was gone, and I felt like a normal college girl- like I was in control of my own life again!

I recently just had my fourth surgery with a different colorectal surgeon (who is so catious and caring). Initially I went in to get a fistualtomy to be done with this nightmare once and for all (heal the fistula).I went into the operating room thinking that was what would happen was a fistulatomy but I woke up with a cutting seton and I lost it because it seemed every time I think an operation would end my misery, another unexpected thing would happen. My surgeon said that the fistula was too high and long to do a fistulatomy, considering I would have a high risk of incontinence. No 18 year old wants to even consider that idea, but I am grateful enough to have avoided that. Therefore he placed a cutting seton to cut slowly and reduce the trauma to my sphincter muscle. Only problem is, I wasn't mentally prepared for this cutting seton. I go back to college in 12 days and I'm still in lots of pain and discomfort from this cutting seton. I want my rubber seton back so badly because everything was great after I healed and recovered from my third surgery. I tried to go in today to replace the cutting seton back to the rubber seton considering I know how to live and clean the rubber seton while in college, but when he began to insert the probe into the area I screamed in agony as the area is still very raw since I had surgery 7 days ago. I couldn't go through the replacing procedure. So it looks like I'm stuck with this cutting seton in college which I'm hoping is a blessing in disguise. I want to defeat this fistula in the summer after I'm done with my semester, which is when I will have the first tightening of the cutting seton.

For those with a cutting seton how long did it take for the pain and discomfort to go away? Also how do you clean the area after a bowl movement? I'm so used to moving my rubber seton around while spraying it with a shower head but I can't even touch near my cutting seton. Will it function as a regular seton over time since I'm not tightening it until I'm done with school?

The pain of the cutting seton is difficult. I can't move without being in pain. I can't sit on my bottom. If I cough or sneeze I feel pressure down there. I didn't use the restroom in 6 days because I was so terrified for my first bowel movement. I had a small one and it felt like hell.

Emotionally this has really taken a toll on me. I don't have Crohns which I grateful for. I have read hundreds of forums on here and I know that the majority of you have had it much worse than I have. And I commend all of you for your strength and resilience, it inspires me to look at life in a more grateful and positive way. It's just been hard because I just want to be able to be like everyone else I'm surrounded by. I want to be able to sit on my bottom during a lecture, and walk to class with comfort. Maybe go to a concert. I just don't want this cutting seton pain to control my life next semester, as these abcesses and fistula have controlled my life for the past year.

If you took the time to read all of this I thank you. I look forward to reading your responses below.

Post Edited (LS876) : 1/4/2018 3:13:20 AM (GMT-7)

Hi LS

I’m so sorry you’re having to deal with this so young. You’re handling it so well! I have a RVF with one entrance and three exits and three loose setons so I can’t unfortunately help with any experience re cutting setons. However, I agree with Dimitri that it’s highly unusual to leave it without any adjustment for so long. I was under the impression that the whole point in them is to adjust them often to move the fistula. Plus my setons will be changed ever 3-4 months. Maybe worth checking with your CRS why he’s chosen to leave it in unattended for so long.

I have CD but I believe this applies to the both of us; what we have is not terminal and we WILL beat this fistulae! It just might take a little bit of time.

Good luck and stay positive.

Hello Dimitri71,
Thank you very much for your kind words and encouragement. The reason the cutting seton is going to remain until summer of 2018 is because I'm not going to tighten it regularly. If I were to tighten it regularly my doctor said it would take 4-8 weeks to make its way through. I go to college across the state from where my colorectal surgeon is located. Therefore I don't have the luxury of living at home and getting into a bath every time I have a bowel movement. I also don't want to be uncomfortable during school, so when I return home the tightening of the cutting seton will begin. Very complicated and unconventional I know. Hopefully by the summer time this nightmare will be over!

Very wise of you to have two colorectal surgeons. My first colorectal surgeon who performed 3 surgeries on me to get rid of my abcess originally wasn't very kind or helpful when explaining. Originally I trusted her since she was the surgeon and I was the patient. But now I can tell you that the first two surgeries she completed were not done well. However my abcess finally cleared with my third thankfully. I switched colorectal surgeons and I couldn't be happier. Very knowledgeable and kind doctor. It truly is very important to trust your surgeon as well as develop a relationship with them so they understand your case.

I wish you the best of luck with your fistulatomy or cutting seton placement in February! Thankfully both of them have very high success rates, both over 90%! Good to hear that the end of the road is near for you! Happy new year to you and your family !

Thank you again for your kind words

Hello Poppie,
Thank you for your sympathy and kind words. Hopefully this will be over soon, but I believe that these things happen for a reason. I am currently studying Biology and hopefully continuing to medical school after that. Maybe this experience I had at a young age will help me become a doctor who truly understands the pain of her patients. It surely has made me appreciate the little things in life that I am able to do when I'm not in pain. I've been asking why me for almost a year now in my weak moments, but there is a positive to every struggle. Maybe the rest of my life will be a little sweeter after this experience.

Thank you again for your support, happy new year !

Post Edited (LS876) : 1/5/2018 1:47:40 AM (GMT-7)