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hi, 

 

i am new to this forum and in desperate need of some advice/ guidance regarding a procedure I had yesterday. I have had an pouch for about 5-6 years now and had no problems until last year when I began suffering swelling and pain in the vaginal - peri anal region which was diagnosed as a fistula. my surgeon put in a loose seton to keep it draining and I was coming to terms with living with this long term however over the past few weeks I started to get the same pain/ swelling on the right hand side. 

 

I underwent an exploration under anaesthetic and was told that the seton had blocked internally and caused an absess to form on the right hand side (the seton is on the left side). My surgeon then told me there was a bit of infection there that he had to clear out and he moved the seton further towards the back. Once I got home and had a look at exactly what had been done i was shocked to find an excision on the left hand side about 4-5cm long and a few cm deep with the seton in place. 

 

Will this excision/ wound heal or is this what I've been left with? Any help would be greatly appreciated freaking out a bit!!!! 

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Thanks jan I hope this is the case. I have been trying to get in contact with my surgeon just for reassurance as I'm only 23 and really dont want to be left with this much larger excision as before hand it was very small opening. I was worried about it closing superficially on the surface and because I've been given no after care instructions I was a bit panicked. 

 

 

I suffered 2.5 years with stricture/ fistula problems. My NY surgeon dilated the stricture & put seton in for Perianal stricture. It was so uncomfortable had it removed. After a few weeks still had stricture & fistula problems went to a different NY surgeon 1 yr later. He dilated  & cleaned the area out said not to do anything with the fistula. Put me on 2 antibiotics. Heavy doses of flagyl/ Cipro and the fistula cleared up on its own- in a few weeks. I really was amazed. I'm still having stricture problems. My insurance changed and waiting to go back and get stricture done again. 

can I ask if the fistula was connected to your pouch? that is my worry as the fistula I have is coming from the pouch therefore I am experiencing leakage etc and with the small hole I had previously now made bigger by my surgeon to clear the infection I fear it won't heal as constantly irrated. I have the seton still in place too and it has been giving me a lot of discomfort the past few days. Would love to hope this will improve in time as yours did.

I'm not sure if it's connected to the pouch, but I will ask Dr.-  I dont think it is. I had a really good run with my jpouch. 15 plus yrs of very few issues. Then stricture ( problems going), during the stricture surgery-Dr found the fistula & it's been a real pain since. Until new Dr.  cleared it out. All of my Dr's agree to leave the fistula alone. So I thought it would never clear- then it did. I go to Mt Sinai,NYC. for all of my surgeries.  My first surgeon doesn't take any insurance (anymore) so I had to get another one in my plan. Going back soon.

I'm also taking remicade- every 6 wks- but it really isn't doing anything.

I had my Jpouch done in 2000. Around year later I had fistula come up I'm my "taint" area. Best way to describe it since it's exactly between anus and vaginal opening. After SEVERAL failed attempts to get mine to heal. My original dr more or less took rubber band and surgically placed it behind fistula with ends hanging out and would tighten it weekly in the hopes that it would cut thru and heal behind it. I'm sure there's a name for this. I call it torture. Needless to say I had ZERO success and even had my bag put back on in hopes of diverting stool/ bacteria so it could heal. After that fiasco I turned to Cleveland Clinic and found the best Dr Victor Fazio! He is a god! He looked at my medical records and said we can fix this. He did the fistula repair but found that my sphincter was a U instead on O. Now idk if this was from previous surgeries or birth of my last child but I was having serious continence issues. He repaired my sphincter but me being me I had the fistula come back or maybe was new one. He did the seton string and I had it for around 8 years. I've had it swapped out few times I've always joked that if he put in stainless hoop it would look like intentional piercing (not that anyone sees it but hubby  and my Drs) one time it did get blocked and had to be drained but as soon as I felt the soreness and a knot swelling I went straight to dr and got on antibiotics and had it drained. 7 weeks ago the string came out 😳 freaked me out but my dr here in Nashville said I've had it so long it's like an ear piercing and should be fine without the string in. We're just trying watching it at this point but I don't see it ever closing up. Mine doesn't go thru to my Jpouch but more thru my rectum/cuff maybe. Hopefully yours will heal. If you have any doubt ALWAYS get 2nd or even 3rd opinion. My original surgeon was ready to throw towel in and do perminant bag. At 30 I wasn't willing to give up and am so thankful for the Drs at Cleveland Clinic. My new dr here in Nashville is awesome. Dr Jason Aston (gotta love the name for colon surgeon since he sees then by the ton) he implanted the interstim device for my incontinence 3 years ago and I just had new unit implanted 3 weeks ago. Just stay positive and remember it can get better! Good luck !
Thanks for all your replies, its good to know tht I'm
Not tht only one with these issues and also tht there seems to be quite a lot of options available. I'm from the UK and have had my surgeon since I was 14 (nearly ten years) I probably wouldn't trust anyone else as he has performed all my surgeries so far. He contacted me a few days after the procedure I had to clear infection from behind the fistula and he said tht the incision he has made should heal but I will still be left with the fistula as seton still in place. The pain has eased off a lot the wound/ incision doesn't look any smaller, the seton is actually running directly through it. Uc Danielle I would love to pm you and discuss once I work out how to pm on here I'll be in touch lol!

PMs on this site are called "Dialogs." The easiest way to start one is to click on the person's name, and select "Start Dialog" on the right side of the screen that pops up. The easiest way to see if you have any new messages (and to check them) is the "Dialogs" button on the top, right of any of these Forum screens (you have to scroll to the top). You can set notifications to email you when you have a new message, but the button turns pink in any case.

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