Fistula Advancement Flap Surgery - Has anyone had success with this!?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jackson17
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/7/2010 6:44 PM (GMT -6)   
Hey everyone,
I have a pereianal fistula that runs out my bum cheek next to my anus. I've had the absesses that caused the fistula drained twice, both under general anesthetic, they then put a Setton in. I had the Setton in for 6 weeks, then went back into hospital and had the Setton replaced with a new one. Now, another 6 weeks later, they are telling me that I need to have the Fistula Advancement Flap surgery, but that it only has a 40% chance of working.
I'm 32, single and a female and am finding it hard to cope with wearing pads everyday, and it obviously affects every part of your life, exercise, love life etc. I do not have CD.  
Is there anyone out there in the same situation as me?
Has anyone got any success stories for this type of surgery? Or of any other procedures?
Can anyone give me ANY advice or words of wisdom??
confused 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3069
   Posted 4/7/2010 9:55 PM (GMT -6)   
I tried to have it done twice...but since I do have Crohn's my tissue was not in good enough shape and my CR Surgeon wouldn't even try:(

I would think that since you don't have Crohn's you might have a better shot? From what I understand, if the tissue in that area is 'healthy' you should have a good chance of it working. Is your doc a ColoRectal Surgeon? Why are they replacing setons every 6 weeks?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


mrsjennym
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/9/2010 8:28 PM (GMT -6)   
I am in a similar situation as you.  I am 35 year old female and I had an abscess last month and my colorectal surgeon drained it and said there was a 30% chance of getting a fistula.  Lucky me, that is exactly what developed (the opening is about an inch to the right of the anal opening).  Just had an exam under anesthesia and she said if the fistula wasn't too deep, she would open it up but if it was, she couldn't do that because of the risk of incontinence.  So she ended up putting in a seton for now and I have to go back in a couple week to discuss flap surgery.  My CR surgeon said that the surgery has a 70% success rate, but that since I am young, healthy and don't have Crohns, my success rate should be better.  She also keeps you in the hospital for a couple days to maintain bedrest to increase the odds of success.
 
I just hope it works because I agree, living like this it not fun.  Luckily I have a very understanding husband but it is so uncomfortable!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/9/2010 9:41 PM (GMT -6)   
I totally understand the desire to have this surgery!! Here is what my CR Surgeon told me. The odds of success in non-CD is 70-80%, with CD it is 40-50%. If the operation fails, you will almost certainly get an abscess. In order to help your chances of sucess, he said I would need to spend 3 weeks in bed with very little activity is necessary to reduce stress in the area -- he was quite insistent about the 3 weeks.

I do have CD and have had my setons in for 2 years. I have gotten used to them and they really don't bother me at all now. Mine are in the perineum area.

This is a very personnal descision! I really just hate abscesses, and am concerned about the damage that another one will create (I've 3 in the same area). So for me, I choose to keep my setons. If I didn't have CD, I'd be more likely to try the operation -- but I would wait a full year from the last abscess. My doctors said the tissue in the rectum heal very slowly (many, many months) for CD and non-CD folks. I think the best chance for success is with the healthiest tissue you can get.

Lastly, make sure you have an very experienced CR surgeon. Very, very important! I would talk with a few to get their opinions too. I strongly suggest one associated with a teaching hospital because they stay current with all the latest procedures. And they are on a salary whereas suregons in private practice only get paid when they operate. If you are on salary, you don't care if you operate or not, and having had a completely incompetant general suregon, I want a surgeon who does what is right for me without thinking about the money. Just IMHO.

Take care!

Take care,
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/12/2010 9:17 PM (GMT -6)   
Yes, I am going through almost the exact same situation as you are except I am a 28 year old male. They have not offerred me that "flap" surgery that you are speaking of. This mess sucks and can completely take your life away. If there is anything or any words of encouragement I can offer shoot me a message. Im eager to hear more about the surgery.

Jackson17
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/14/2010 5:13 PM (GMT -6)   
Thank you so much for your answers!!

I'm hoping that because I don't have CD, I'll be in the higher success rate. But I'm going to see if I can wait another couple of months to have the flap surgery because I've been told the longer you leave the setton in, so the tissue is healthier, the better chance you have of the flap surgery working.

I do have a Colorectal Surgeon, but because I'm going through the public health system, I have had a different surgeon each time I've been into hospital. They changed the settons after 6 weeks because they put me under general anesthetic so they could have a look to see how it was all healing, and decided to change the setton while they were there.

MrsJennyM - it sounds like your case is really simular to mine. Let me know how you get on discussing the flap surgery, and what they say to you. It's always good to hear what other surgeons opinion is on it all.

I am on the waiting list now for the flap surgery, so am just waiting to hear when I will be going into hospital. I've also been told that you need to take 3 to 4 weeks off work after the surgery and have complete bed rest. Makes it very hard to pay the bills!!

Ileostomyfree
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 4/14/2010 7:30 PM (GMT -6)   
Hi All,
I too had a fistula, rectovaginal. Got it from 2 previous surgeries. I went in for the advancement flap repair and was told I had a 50-50 chance of it working. Waited 3 months to have the gastrogaffin barium test done. Needless to say it didn't work. It seems the fistula was too big. My colorectal surgeon had me wait a few months and then scheduled me for the Gracilis graft repair. My colorectal surgeon worked side by side with a plastic surgeon who specializes in muscle grafting. I had an ileostomy while going through these surgeries. I have to say the Gracilis graft to repair the fistula was a pretty major surgery. No sitting for 6-8 weeks. Could only stand up or lay down. It is now 4 months later and I'm doing really well. The fistula is finally gone, Thank God!! I had my ileostomy reversed 3 weeks ago & I'm finally feeling like my old self.

I know they use the gracilis graft surgery as a last resort..since it is very invasive. I wish you all well. If you have any questions don't hesitate to ask. Eileen

Ileostomyfree
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 4/14/2010 7:31 PM (GMT -6)   
Jackson, I didn't have CD either...and the fistula also did go through the perinneal area. I feel your pain. If all else fails..ask your dr. about the gracilis graft to repair the fistula. The success rate is about 90-95%

mrsjennym
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/14/2010 9:13 PM (GMT -6)   
I meet with my CR surgeon in 2 more weeks to discuss the flap surgery. I had an exam under anesthesia and she said if the fistula wasn't too deep or in the the schincter muscle, she would flay it open (fistulotomy) but if she couldn't, I would get a seton and in a month we would schedule the flap surgery. It has been 8 days with the seton and it is getting better and starting to feel more comfortable, but I definitely don't want to live with a seton so I really hope the surgery will work. I am lucky that I have a fantastic CR surgeon (one of the best in the state) but she didn't mention weeks of bedrest after the surgery. Talk about a major inconvenience! That will not be easy with a 3 year old and a 5 month old!

I will keep you posted Jackson17.

jury2
New Member


Date Joined Jul 2011
Total Posts : 18
   Posted 1/22/2012 9:47 PM (GMT -6)   
I am having flap surgery on Feb 7th. The doctor has not said I need bed rest for 3 weekd but I do need to be off work for 3 to 4 weekd. Do zi need bed rest to heal?

Jen39
Regular Member


Date Joined Apr 2011
Total Posts : 44
   Posted 1/24/2012 2:53 PM (GMT -6)   
I was scheduled for FLAP surgery on January 13th to repair my r/v fistula, but when my CR surgeon went in to do it, I had another fistula (a big one through the anus) and I had an infection.  So instead he gave me 3 setons, 2 through the r/v fistula and one through the other.  I have been in quite a bit of pain until yesterday (10 days post-op).  I went to my follow up appointment yesterday and he says it could take as long as 3-4 months until we can reschedule the FLAP surgery.  Good news is he biopsied the areas and I have no active Crohn's there, just chronic inflammation (no surprise since I've had the r/v fistula since October 2010, before I was even diagnosed with Crohn's).  He said we need to be patient, because the other alternative is a colostomy to let the area heal, which I do NOT want.

Jen39
Regular Member


Date Joined Apr 2011
Total Posts : 44
   Posted 1/24/2012 2:55 PM (GMT -6)   
Oh and originally my surgeon was going to have me off work for 2 1/2 weeks after the FLAP surgery.  He said the most important part was to take sitz baths after every BM.  With the setons, I went back to work the following Wednesday so it was 5 days off total.  I still have to take sitz baths, but not as often.

fistuguy
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/11/2013 6:51 PM (GMT -6)   
I'm a 32 year old guy and scheduled for a fistula flap surgery in 8 days. I have Crohns and have had 3 fistulas for 6 years. Theyve been leaking and bleeding on and off but the majority of the time I need to wear a pad. Ive had the seton surgery a bunch of times, and I currently have setons in me.
My doctor also mentioned 70% success and a 10 day bed recovery time.
After reading these posts, I am cancelling my surgery. I'm a wedding photographer and my job is very active. I already had to get replacements for 4 weddings, but now I see I will lose more than just work from this surgery.
Thanks all.

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 417
   Posted 2/13/2013 7:51 AM (GMT -6)   
I had two large rectal fistulas that went from inside the rectum, came out just about an inch from anos, and I had setons installed in 2007, but unlike you, I was diagnosed with CD in the lower colon. I healed my fistulas with diet and pentassa. I followed the SCD diet 100%, and in 6 months after being on the diet, the first fistula healed up so much the surgeon had to remove the seton. After 8 months on the diet, the other fistula was healed up. Surgeon and GI both said they never have seen large fistulas like I had heal without using drugs like remacade. To this day, 6 years later, I have not had one symptom of CD, or another fistula or any problem in that area, and I feel great. I still follow the SCD diet, but not so strict as before, and I still take pentassa.

Even though you don;t have CD, this diet might work for you. The theory behind the SCD is that you have an out of balance of bacteria in your gut which causes your immune system to go into overdrive, which in turn is causing the inflammation and abcesses. The SCD diet eleminates all foods that contain sugar and all carbs which convert to sugar. Bacteria feed on sugar , so with this diet you are trying to kill off all the bad bacteria in your gut by starving them of thier food source. You then repopulate your gut daily with good bacteria by eating home made yogurt. Over time, your gut will get back into balance with the good bacteria and inflammation goes away.

Even though you don't have CD, abcesses and fistulas just don't form for no reason. Something is going on inside your gut. Read the book "breaking the vicious cycle" which is about the SCD diet. You have nothing to loose and all to gain if it works for you like it worked for me.

Post Edited (NY-Sooner) : 2/14/2013 8:54:33 AM (GMT-7)


DeeBee
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/27/2013 12:04 PM (GMT -6)   
I'm in the same boat as the girl that started this thread, no CD developed a fistula and had a seton put in at the end of March. I'm scheduled advancement flap surgery in November. My quality of life since having the seton put in has not changed. I've continued to be very active. The seton has not slowed down my running or strength training. I just buy a lot of bandaids. LoL I'm also lucky to have a super supportive boyfriend.

I have the book the vicious cycle and also have a yogurt maker. I just haven't taken the step to start. I'm at the point (now that surgery is staring me in the face) to give it a go. I'm wondering how your docs could tell that your fistula had healed while the seton was in. What were the signs that they saw that indicated it had healed to the point to made them take it out?

I'm interested in any additional info you can share. I realize it's been a while since your post on this thread. Thanks in advance for any experience you can share. Thanks so much!!

NY-Sooner said...
I had two large rectal fistulas that went from inside the rectum, came out just about an inch from anos, and I had setons installed in 2007, but unlike you, I was diagnosed with CD in the lower colon. I healed my fistulas with diet and pentassa. I followed the SCD diet 100%, and in 6 months after being on the diet, the first fistula healed up so much the surgeon had to remove the seton. After 8 months on the diet, the other fistula was healed up. Surgeon and GI both said they never have seen large fistulas like I had heal without using drugs like remacade. To this day, 6 years later, I have not had one symptom of CD, or another fistula or any problem in that area, and I feel great. I still follow the SCD diet, but not so strict as before, and I still take pentassa.

Even though you don;t have CD, this diet might work for you. The theory behind the SCD is that you have an out of balance of bacteria in your gut which causes your immune system to go into overdrive, which in turn is causing the inflammation and abcesses. The SCD diet eleminates all foods that contain sugar and all carbs which convert to sugar. Bacteria feed on sugar , so with this diet you are trying to kill off all the bad bacteria in your gut by starving them of thier food source. You then repopulate your gut daily with good bacteria by eating home made yogurt. Over time, your gut will get back into balance with the good bacteria and inflammation goes away.

Even though you don't have CD, abcesses and fistulas just don't form for no reason. Something is going on inside your gut. Read the book "breaking the vicious cycle" which is about the SCD diet. You have nothing to loose and all to gain if it works for you like it worked for me.

1-2many
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/27/2013 1:08 AM (GMT -6)   
I am five days post op from an advancement flap surgery for a high complex fistula which started with an abscess. I wanted to write something for someone to read concerning the pain since I was in their shoes last week. Everyone is different but I wanted to put some minds at ease. I had a "saddle block" for the surgery and was awake for most of it. The CRS said that the adv flap was the best option given my condition. The pain wasn't bad after the first night. The first night was mostly spasm pain. Yes, there is blood and draining but I used incontinence pads and gauze (not medical sponges because they will stick!). I am still draining from the fistula (CRS told me it was still infected). If you have had a perianal abscess before , the pain from treatment of my abscesses was much worse and more intense for comparison sake. Oh, don't fear the first BM like your body "wants to". Relax as much as possible. It took me three full days before mine and I was taking Colace 100mg three times per day plus Citrucel. My advice is to eat foods that you know your body agrees with and that are easy to digest. I was on yogurt and toast with honey mostly. I can't comment on how many days I will be out but the main thing is to do the sitz baths as much as possible and especially after BM's. I take 5+ per day to be safe. My CRS did want me to take it easy for a few weeks though and I will head his advice. When taking baths, try to not to sit on one cheek all the time either. I found that it gets bruised and then all kinds of bad thoughts get in your head because you fear the worst. Take the bed rest if you can but make sure you walk around as well. It helps everything. Hope this helps someone out there. I just had to give back. Be well.

headphones
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 5/19/2014 11:58 AM (GMT -6)   
Hi all! I realize this is a really old thread, but I just wanted to ask if any of you had long-term success after dealing with a gracilis flap procedure? I had the surgery in January and it seemed to go well, but just as I was starting to feel better and get back to normal life I started having drainage again. Turns out I developed another abscess and a couple fistulas. They opened me up again and gave me some drains, but after a couple weeks with that they put me on a wound VAC because it was much bigger than they had originally thought. I had the wound VAC for about a month ( my third or fourth, hate these things!) and my surgeon said at the end of this month they'll make a decision whether to keep me on the vac or do the gracilis again with the muscle from the other leg. So frustrated as I've been dealing with this butt wound since I got my rectum removed and sewn up two years ago. Just wondering if there's any success stories from you guys, or suggestions that I can use to spur my healing. I used to follow scd, and do a slightly less restrictive version now. Trying to eat a lot of protein and take vitamins and supplements. By the way, my doctor thinks I have Crohn's or Crohn's colitis, and I've been on prednisone often on a lot over the years. Also had many surgeries and procedures which makes me a great candidate for all these problems, ha ha!
headphones
35 yr. old female
UC /possible Crohns
emergency ileostomy 11/07 while 5 months pregnant
j-pouch surgery in 2011, didn't work out so well.
permanent ostomy 6/2012, gracilis flap surgery 2014
Too many procedures to count because of fistful as and abscesses
Currently dealing with reoccurring abscesses:(

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 417
   Posted 5/19/2014 12:26 PM (GMT -6)   
In 2007 I was diagnosed with CD in the colon after having two massive rectal fistulas that exited near my anos.  GI insisted that remicade was the only way to heal these fistulas.  Surgeon put in two fistual plugs which came out after a few weeks.  He then put in ctons.
 
I did a lot of reserach and decided to try the scd diet before trying remicade.  After 5 months of 100% fanatical dedication to the diet, the first fistula closed up so much that the cton had to be removed so further healing coud take place. By 7 months, both fistulas were healed completely up.  Surgeon said he had never seen fistulas as large as I had heal without drugs, so what ever you are doing, just keep it up.
 
That was 7 years ago and I have not had a fistula or other symptom from CD since then.  I still follow the scd diet and the only drug I take is pentassa.
 
Read the book "breaking the vicious cycle" which talks about the scd diet .

headphones
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 5/19/2014 8:22 PM (GMT -6)   
Thanks, better get strict about it again. I did feel great when i followed it 100%, but it is not easy. Especially when u don't feel well enough be making so much food. So glad you had great success NY, that is encouraging:)
UC /possible Crohns
emergency colectomy 11/07 while 5 months pregnant
j-pouch surgery in 2011, didn't work out so well.
permanent ostomy 6/2012, gracilis flap surgery 2014
Too many procedures/surgeries to count because of fistulas and abscesses
Currently dealing with reoccurring abscesses:(
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 17, 2014 2:26 AM (GMT -6)
There are a total of 2,219,977 posts in 247,035 threads.
View Active Threads


Who's Online
This forum has 156372 registered members. Please welcome our newest member, Cilia.
212 Guest(s), 4 Registered Member(s) are currently online.  Details
Jackie Moon, PeterDisAbelard., ozm8ey, Croftboy


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer