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Had my second seton placed 2 weeks ago and I'm still unable to walk normally and in enough pain that I am taking Oxy.  I feel like a wimp.  My last seton was an awful experience--surgeon had to keep re-cutting around the area because it would heal too fast.

All I read about is how quickly setons heal and how people don't even notice them.

Is what I"m going through unique?  I'm worried my tolerance for pain has gone down after 25 years of Chron's, and I'm taking pain pills unnecessarily.

Reply posted for charbs.

I had some setons replaced yesterday. When they were just about to send me home I realized they hadn’t even touched the one fistula that was giving  me the most problems. The doctor apologized and numbed it up and put in a seton. Today everything seems to be going fine.

Reply posted for Trossmathews.

I have multiple fistulas that need both surgery and setons. I am 29 and have had CD over half my life, severe, been through all medications, never remission. Pain management is pretty hard, especially with the crazy laws around pain pills now since aparently we are in an epidemic....If I go to the same hospital's ER that I had been to since I first was diagnosed around 15 years ago..even with all my medical records at that same hospital..I am treated like a pain pill addict even though my CD is creating excrutiating pain. It has created a true problem for people with true chronic pain. Once in the hospital - a few mg of Dilaudid and Fennergen and I feel a lot better; but what do you do at home? After my hospital stay this past February, I signed a pain management contract with my family practitioner and she has been able to prescribe me Oxycodone and Oxycontin over this past year in between hospital stays. For the past 3 months or so I have been waiting on a referral to a pain management clinic that specializes in this area. I would attempt to get a referral to a place like this and in the mean time, ask your current doctors if they do pain management contracts with people.

Reply posted for Ethan.

I have had my seton on for about 2 months and it has been an awful experience. The pain has gotten progressively worse and so has the bleeding. I’ve done rounds of antibiotics but they haven’t helped so I don’t think the pain is caused by an infection. I’m a server so I’m on my feet a lot which makes the pain even worse. I feel like my doctor has dismissed my pain even though he’s admitted that it’s not normal to still be in this amount of pain. I have a LIFT procedure scheduled in 2 weeks but does anyone have any advice for pain management? I take lots of sits baths and a heating pad works great at home. I need something for while I’m at work.

Reply posted for Ethan.

Hi, I have recently had 2 setons almost a week ago. Can you let me know what I should expect in terms of symptoms. I understand they drain but from experience how often and how much. I read your able to live life as usual I am just seeing if this is something you agree or disagree with? If anyone can give me any sort of info on how they found it please. 

Reply posted for Ethan.

Good morning \
New to the group. I had a seton placement on the 28th of June and am going through a rough patch also. I am very interested in alternative treatments to help with the healing protocol. Thank you so much.

Reply posted for Ethan.

I had a fistula that was building up pressure for days.  I tried like heck to pop it  without results then yesterday it just started draining. It will probably drain for a week or so.

Reply posted for Ethan.

I actually just got my seton out but it was in for 3 months. I went through the same things as you such as not being able to walk normal. It really stinks but it does get better and you just have to keep fighting.

Reply posted for Ethan.

On more than one occasion I’ve Had a doctor tell me I must have a high tolerance for pain. Not sure how to take it. I don’t WANT to suffer, but with these fistulas I sure did.  I usually know when to go to the doctor, and a couple of times my Dr. said I needed surgery immediately.  My fistulas were diverting blood and pus to my testicles. That came on really fast and the pain was immense.

Reply posted for charbs.

Thanks. 

It ended up bleeding a LOT yesterday night and now it's much less painful.  I guess it just needed to push some gunk out.

I feel like I was a lot tougher 15 years ago.  This disease has worn me out.

Reply posted for Ethan.

Give yourself some credit. Those things never really heal up, but I would relieve pressure by squeezing the site while in the shower.  Spray hot water on the wound for a couple of minutes first.