Flap surgery for fistula repair

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New Member

Date Joined May 2015
Total Posts : 17
   Posted 6/17/2016 10:54 PM (GMT -7)   
Hi everyone. I haven't posted on here in a very long time. Having to take care of my almost one year old boy and dealing with my fistula issue has been a true challenge.

After waiting for a year an a half with two setons placed, my situation was finally ideal enough to try the rectal advancement flap procedure. What I mean by ideal is that there were no pockets of abscess/ active infection. I had minimal drainage which is expected due to the internal opening and the darn nature of a fistula.

Anyways, last Thursday I had the surgery and 6 days post op, the flap failed and I started to have the same type of drainage as before. Went back into the OR to confirm that the flap failed (which it did) and came out with a seton. Needless to say I'm devestated as this was the last bit of hope I was clinging onto. I don't have ibs or chrons. I just need some advice from anyone who is going through this, has any type of fistula repair ever worked for anyone???? I feel
Like I'm stuck and I've hit rock bottom this week. I want my life back and I want to swim, have sex with my husband and have another baby. I just feel like I can't do any of those things because I find the seton and the drainage so gross.

New Member

Date Joined May 2015
Total Posts : 17
   Posted 6/17/2016 10:57 PM (GMT -7)   
I must also note that I have two wounds now from my previous two setons which require daily packing dressing changes. I have a significant amount of drainge and am in quite a bit of pain. I really can't function. I know the wounds will heal like last time but I've lost hope for the possibility of a repair. Do I have any other options or is this it? I'm a 30yr old female and otherwise perfectly healthy prior to my fistula problem that started during my pregnancy.

Veteran Member

Date Joined May 2012
Total Posts : 3370
   Posted 6/18/2016 2:28 AM (GMT -7)   
Hey! I know it's rough, fistulae are so difficult, but I want you to know that it's TOTALLY possible to have fairly normal life with fistulae and setons.

A few months after I was married, at the beginning of 2012, I got a recto-vaginal fistula. I had a seton put in and started Remicade, then we took the seton out to see if Remicade would heal the fistula. It didn't, so about 6 months later we put another seton on. A couple of months after that, I got pregnant with our first kid. Obviously because of location, sex was a bit of a delicate thing that first year of marriage! I was fortunate to have an understanding husband. He kept reassuring me that he didn't think I was gross (I totally felt that way). I had a c-section in 2013 because we didn't want me to tear with the fistula.

In 2014 we decided to try a plug surgery, which failed. We ended up just leaving the seton out at that point because my fistula had healed around it. Basically it's like a pierced ear at this point - the skin is all healed up, just with a tiny tunnel still there. I got pregnant about 6 months after the surgery, and had a c-section two months ago.

So it is possible! I know right now it doesn't feel like it because you're in pain and feel gross, but I promise that over time you'll adjust to the new you. It's hard to accept, but you kind of have to figure out how to become okay with who you are now. It might change, you might find success later in healing, but for right now you need to figure out how to be okay with yourself as you are. One thing that helped me was to imagine the roles were reversed - if my husband had this problem, how would I feel towards him? Or my child?

Just hang in there! You're doing great! If you are still really struggling after several weeks, you might want to consider seeing someone to get some coping techniques. But for right now, what you feel is completely normal for what you're going through. You need to grieve for the loss, go through the grieving process, and then you can begin to heal emotionally.
CD, gastroparesis, fibro, arthritis, GERD

Meds: Remicade

"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

New Member

Date Joined May 2015
Total Posts : 17
   Posted 6/18/2016 5:53 AM (GMT -7)   
Thank you for your post. I just think I had so much hope riding on this repair. I mean I was warned that there is a chance that it would fail but didn't expect for it to happen in 6days!!!!! Like jeez!!! You are right, with time I will come to terms with things but for now, I just need to cry it out. If anyone has any success stories I would love to hear them. And thanks for sharing your personal story! Makes me feel no so alone in this situation.

Regular Member

Date Joined Aug 2017
Total Posts : 44
   Posted 10/2/2017 8:37 AM (GMT -7)   
Hey I was wondering how you are as it has been over 12 months since this last post.
I am about to have an advancement flap done next week and im dreading it. I was also a newlywed when I got mine. Married in Feb by March I was in the hospital and my life would appear to be changed forever.

Just wanted to know if you had had anymore surgeries and if something had worked for you.

New Member

Date Joined May 2015
Total Posts : 17
   Posted 10/3/2017 8:27 PM (GMT -7)   
Hi ZoeUk1989.

I am happy to report that I have fully recovered. I must apologize for not posting earlier. When I was going through all my issues, all I did was search the internet for answers to find a little bit of hope through reading others experiences. I never found any positive outcome stories and I promised myself that when I overcame my fistula problem, I'd post about my success. But I never did. I really have no excuses. Although I haven't posted I think about my ordeal every day. I hope that sharing my outcome will help in providing you some hope and strength to not give up.

So to provide an update to everyone out there: after my failed rectal advancement flap surgery during summer of 2016, I had a seton placed in on the right side and the left side healed and closed on its own. I guess because my fistula was a horeseshoe shaped, this closure from the failed advancement flap surgery was a blessing in disguise. I then waited until November 2016 to attempt another surgery. Not because I had to, but because I wanted to return to work after mat leave and have normal routine. I had 5 surgeries in the span of 1.5yrs and I just had enough of it!!! I couldn't mentally or physically deal with recovery anymore.

Nov 2016 I had the lift procedure. The closure of the left side made me a better candidate for the lift procedure for the right side. It was a day surgery but I convinced my surgeon to keep me overnight. I cooked food and froze it in advance, made sure I didn't get constipated and did complete bed rest for about a week. The pain was much more manageable than the flap surgery. The external wound still required packing, which didn't take very long to heal. But the area that required a good 5-6wks, if not more healing time, was the incision they make close to the anus for the lift procedure. Because of bowel movements and the pressure/stretching and just being a very unclean area, it took so long for the opening to heal. I found taking sitz baths helpful and using moist wipes instead of toilet paper. Also, the drainage from this incision continued until my stitches completely dissolved or fell off.

My advice for the advancement flap surgery is to make sure you rest. Allow the stitches inside to do their job. Try bed rest if possible and try not to get constipated. When mine failed, the flap was barely attached to the opening on the inside when they took me back to the OR. Almost all the stitches had ripped. I also felt all the stitches inside my rectum. They were dissolving but I felt them. It was difficult to sit or stand. Taking pain meds helped but it was still difficult to function. All I can say is allow your body to heal and ask the surgeon to stay the night if you can. That was one of my biggest regrets, not staying in the hospital that night. I also had a 1yr old running around which made it difficult to rest. I had family support but they ended up causing more issues than anything.

I'm unsure how your case is or if you have any underlying medical issues. But I hope this surgery works for you and that you overcome this ordeal. Don't give up hope and stay strong.

Regular Member

Date Joined Jul 2017
Total Posts : 88
   Posted 10/5/2017 11:16 PM (GMT -7)   
Impressive and inspiring egommie!
To be able to keep on going after 5 (or even more surgeries) is the secret to beating fistulas. Thanks for posting. Dimitri.
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