Fistula advancement flap surgery

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ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/2/2017 8:09 AM (GMT -6)   
Hey guys,

I am wondering if anyone can offer some stories or advice on my current situation using their own experiences.
I have a fistula that comes out of my butt cheek about an inch or so from my rectum. I saw a colorectal surgeon who put it a seton that was left in there for 8 weeks and then he tried the plug surgery. Unfortunately after 7 weeks on my third post op check up he said it hadn't worked and now he will try the flap surgery. I have had to wait almost 6 weeks from being told it had failed to having my next surgery and it's not been a fun ride.

Most recently the pain that I have is excruciating especially after having a BM. about 3 minutes after pure fecal matter comes through the fistula and out of my wound. I cannot describe the agony this causes. It feels like someone is pouring acid over my body. I scream in pain and wonder when this will ever end. My wound sometimes tries to heal over and then eventually almost bursts again the pain is unbearable.

I am dreading my surgery, the pain pre and post op and whether it will work or not as this is unbearable, i can't live my life like this anymore.
I have to do an enema but I am so worried because every time I have a BM I have extreme pain because it comes through the fistula.

I guess what I am truly after is finding out if anyone had has this surgery and it has been worth the wait and the pain because it has worked. I know we shouldn't read the internet but I don't know anyone who has had this, I had never even heard of it until I got it.
No Crohns or IBS.

Please help me keep postive, im finding this extremely difficult right now :crying:

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 428
   Posted 10/2/2017 8:27 AM (GMT -6)   
I'm having mine today!
I'll let you know how it goes.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/2/2017 8:47 AM (GMT -6)   
Oh wow! Very best of luck to You!! I hope all goes well.
Maybe when you are able to you can tell me more about your story if you would like to share. smile

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3258
   Posted 10/2/2017 3:06 PM (GMT -6)   
Hi Zoe, welcome to the forum! I just want to say how sorry I am for what you're going through. I saw on one of your other posts that you were recently married. Congratulations! But I know that it is so rough dealing with this so soon after I getting married. I was married almost 6 years ago, and about 3 months afterwards developed my first abscess that turned into a recto-vaginal fistula.

My plug surgery also failed, but a part of that was due to how old my fistula was by the time we attempted surgery. I had a seton in for 3 years or so. Now my fistula is a lot like a pierced ear. I don't have any advice for you on the flap surgery (I never had it), but I just wanted to let you know that you're not alone.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/2/2017 3:48 PM (GMT -6)   
Hey Scifi, Thank you for your kind words. It's amazing how alone you can feel going through this. I'm tired of being in my bathroom with no one around crying asking the walls to help me. Literally saying out loud to no one "please someone help me"
I was in pain with the seton but I have read a few people have had this for a while and it's no longer an issue. I just want to go back to "normal"
When you don't dread waking up in the morning. I feel terrible complaining because there are many people that have it much worse than me but i can truthfully say what a corker for my first ever illness. I hadn't had surgery, broken a bone or anything then this happened. Now I am onto my 4th surgery and praying this some day ends.

I Would love to join a gym and go swimming but no can do. I see other people going to work and i think to myself its a good job i dont have my work permit because I wouldn't be able to anyway.

It's been difficult, newly wed and living in a foreign country away from my family. My wife has been great but its still super scary and traumatic.

Thanks for listening to me rant lol

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 10/3/2017 2:09 AM (GMT -6)   
Sending you my support my friend. Congratulations on your recent marriage. I myself have three kids and I am 45 years old, been married to my wife for 15 years. I have a successful small business and was going through my prime, if I can say so.
The fistula was my first, no Crohn's symptoms (my CRS says no way I have crohn's - I don't know) and the fistula hit me out of nowhere. I have never been sick during the last 15 years practically and I am fairly athletic.
So these things do not warn us it seems.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 10/3/2017 9:57 AM (GMT -6)   
I've been in fistula hell for 14 months. I'm waiting for someone to try a LIFT. All they seem to do in Canada is I & D's. I've had 7or 8. Failed setons.......I've read that a FLAP is more successful if they do it in conjunction with a plug. But I think everyone just grasps at straws with these things.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/3/2017 10:18 AM (GMT -6)   
Im sorry Dimitri and UB that you are going through this too.
I don't think there is ever a right time is there for these stupid things. They come like a whirlwind and leave a path of destruction, literally!

I have completely documented mine and I have pictures from the moment i got the abscess and it's come a long way but the pain now after a BM is higher than when I had a big hole it my butt.
For people who have a permanent seton does that mean you can never go swimming again?

It seems like this is a real problem for our colorectal surgeons because the whole time whilst trying to fix you they are trying to avoid making you lose cotinence and that must be frustrating to them. My surgeon is such a lovely guy and I feel that he is really disappointed when something doesn't work and he sees me in pain. I think he genuinely wants to help. I remember him skipping the first 2 options of the stitch or glue because he said it simply does not work so it's pointless.

Gypsy? How are you feeling after your surgery my friend?

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 10/3/2017 12:12 PM (GMT -6)   
Hi, I swam on the beach with my seton - it was a clean beach in the Greek islands though!
I wouldn't swim in a public pool though, both out of respect for others as well as the potential danger to get it infected.

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/3/2017 12:47 PM (GMT -6)   
Yeah this is where my concern would be should I end up with a seton permanently. There is no sea here in Phoenix lol. I think the last time I seem I'm the sea was when I was about 16 and didn't care that it was cold. It was in Ibiza and they had an influx of jelly fish, I got stung!!

The whole situation is unfortunate for anyone going through it. I took the ability to do everything for granted thats for sure. Most days now i can't even find the energy to cook dinner because I have been in pain. Wish I could do more for my wife.
Financially this has been difficult with only one wage and flipping high deductibles and co pays.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3258
   Posted 10/3/2017 12:56 PM (GMT -6)   
My surgeon said it was totally fine to swim with a seton in, and I did multiple times. (And yes, in a swimming pool.) However, I think I would wait until most drainage has stopped before doing that.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 10/4/2017 12:46 AM (GMT -6)   
Hi Zoe, with a seton on you should not be aching after a while (in your body at least!). Our hearts ache anyway!

JChristensen
Regular Member


Date Joined May 2016
Total Posts : 53
   Posted 10/4/2017 12:42 PM (GMT -6)   
I had the flap surgery Aug 1 and so far so good. Pain lasted about 3 days. Only took pain meds the day of and day after. Lots of sitz baths helped. As well as lots of rest. I have another exam in December but I can already tell the draining has lessened. There is hope. My surgeon luckily is AMAZING.
33 yr old female. Diagnosed with Crohns 2002. First bowel resection 2006. Remission 10 years. Recent: perianal abscess and fistulas with seton placement, had setons all removed and an Endorectal Advancement Flap Surgery performed Aug 2017.
Meds: Humira only. Just switched from Remicade after developing antibodies and psoriasis. (past:colazal, pentasa, Remicade, Prednisone, flagyl, Humira)

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 428
   Posted 10/5/2017 1:33 PM (GMT -6)   
So I had the FLAP done on Monday afternoon for my 8 year old fistula. At the time, I'd only had a draining seton in for 6 weeks.
In post op, I told them my pain was at a 1 so they gave me something extra to take the edge off.
Unlike with the seton surgery, I didn't have a bad reaction to the anesthesia so no 6 hours of puking and no fever. YAY!
Unfortunately, the anal pain is pretty tough. I'm not being a hero this time and just taking tylenol.
I'm totally taking my hydrocodone, at least 1, sometimes 2, every 5 hours. I'm also popping the colace like candy. I've only had a little bit of bleeding.
The only thing I'm picking up is my 3.5 month year old and so far so good. I have a follow up appointment set up with my crs on the 20th because I had planned to take a short flight to Vegas on the 21st. When I told him about it, he said he wanted to see me first before he'd say it's okay. I made the reservation after the seton surgery when I thought I wouldn't be having another surgery for awhile. :P
I'm trying to stay optimistic, but I'm by nature a nihilist, so it's hard for me.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 41
   Posted 10/5/2017 4:19 PM (GMT -6)   
Guys, what meds are you all on? I ask because I too just had an abscess drain/horseshoe seton put in and I'm really planning on this thing being out soon (like a month or two tops - fingers crossed). I am exactly 2 weeks out and still having a lot of draining and some pain and I meet with my doc for follow-up in a week. I know she's going to recommend Remicade (currently only on Pentasa) and I'm going to be fine with just about anything if it means healing.

I just need to mentally prepare myself if you guys are on biologics but still need the seton.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 428
   Posted 10/5/2017 4:37 PM (GMT -6)   
Man, you're so lucky, stevo!
You can get on remicade and get better!
I was on remicade for 7 years and it only closed up my fistula for 6 months during that time.
I'm grateful for it because it allowed me to have two healthy babies, but it just wasn't strong enough to get rid of my fistula for good. I hope you have a different outcome.
I'm on Entyvio right now and I'm not a fan of it since it's gut specific and I feel like I have a lot of minor extraintestinal manifestations. It doesn't do much to get rid of fistulas so stay away.
I'm gonna get an MRE soon and we'll see whether or not I need to switch to Stelara.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/5/2017 6:13 PM (GMT -6)   
Gypsy, i'm sorry you're in pain sad I would say I can only imagine but next week I will be feeling the same thing no doubt. I really hope that this surgery is it for you. What is the drainage that you are getting?

The only time at the moment my wound really hurts is after a BM or if i am gassy and the air escapes from places it shouldn't. I am dreading after surgery but hopefully they will give me something to keep the pain manageable. They give me percocet but I would say that doesn't do anything for pain really just makes me feel rather sleepy. Lately when taking percocet It has made me feel very nauseated and makes me itch so i am guessing I now have an allergy to this too. I had none that I was aware of before this and now all doctors hate me because I'm allergic to vacomyacin. Pfffttt lol

Thanks for coming back and letting us know how you got on smile

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 29
   Posted 10/10/2017 10:28 PM (GMT -6)   
Hey me again, so I have my surgery in the morning and I am so worried about how much pain the enema is going to put me in. This is because every BM is painful. Anyone help me? Advice on whether this will hurt more than a normal BM?

DCCrohns
New Member


Date Joined Jul 2011
Total Posts : 14
   Posted 10/16/2017 9:14 PM (GMT -6)   
I dealt with a similar situation, with a larger fistula that would pass stool (and often had particles get stuck in it). Sadly, my first advancement flap surgery failed (I knew fairly early on but we held out hope for secondary healing).

I have since had a temporary (hopefully) ileostomy and opted for a gracilis muscle flap, which seems to have mostly done the trick (nearly fully closed).

On the prep, enemas were always hard as I would leak immediately and had a harder time holding it in. I'd perhaps treat the area around with hemorrhoid cream or similar before you start and now that once your colon is mostly cleared (which happens quickly) you will just have to deal with liquid passing.

Best of luck...and rest up up and stay positive!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara, Azathioprine (100mg/day)

Surgeries: Fistulotomies & Seton Placements/Adjustments (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temporary Loop Ileostomy (7/2016); Fistula Repair with Gracilis Muscle (9/2016); Fistula Repair (12/2016)
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