Advancement-flap success stories?

[justbreathe8]

I currently have 3 fistulas and 3 setons. I went in for surgery two weeks ago to see if the tissue was healthy enough to take out a seton and do the advancement flap surgery. Long story short at that time I had 2 fistulas and he found another superficial one and put a seton in it just because. Then I had to stay in the hospital u expectedly for 4 days because they found some kind of bacteria that they needed to culture and give me IV meds for... So now I have 3 setons and a picc line where I give myself infusions once a day. The med seems to be working, as my drainage is very little. My surgeon wants to take advantage of the antibiotics and I am scheduled for advancement flap surgery on Thursday where he will remove all 3 setons and close them up. He said it is an 80% success rate. I recently had a colonoscopy, biopsys, and the promethius test, all which came up negative for crohns. I was hoping to hear from some of you that have had successful advancement flap surgeries and what/how long recovery was for you. He is also working with another surgeon on my case who recommended I get an MRI on my pelvis before the surgery so he can see the fistulas. Of course the insurance company is closed today so I couldn't schedule it yet. But anyways... Any success stories out there?!

 

[dgg]

I consider myself a success story so far, although I'm hesitant to say too much since my flap surgery was only 5 months ago. Prior to having the flap procedure I had an ileostomy since the idea was that it could help with the healing. I think my doctors were hoping that with the ileostomy my fistula tract would close up but it didn't (although the drainage was much less). I waited 3 months after the ileostomy to have the flap and to date it seems like it has worked. I hear that healing in every patient is different but for me I have Crohn's so I expected everything to take longer.

The flap was done on an outpatient basis and the recovery was not too bad for me. I say that, though, as someone who had about 15 incision and drainage procedures before and had been living with 3 setons that would constantly get backed up and had to get drained so I was kind of used to surgery and recovery in that area already. After the flap I still had some drainage for about 7 or 8 weeks then it stopped. I was finally able to go out without a pad in my underwear, a dream come true! I was told to avoid exercise for about 6 weeks and I was careful about lifting things. Within a few days after the surgery I was getting around pretty normally, but slowly and being careful. I also had an MRI done prior to surgery.

Has your surgeon performed a number of flap procedures already? I suggest you make sure you select someone who has a lot of experience with this. Not sure what your insurance is like but I hear that some of the best CRS surgeons for fistulas are at Mayo and Cleveland Clinic (I see you're based out of mid-west). I luckily found a fabulous surgeon near me and it took me a little while to find her so hopefully your surgeon is highly skilled in this area. The hope is for my ileostomy to be reversed but I am so happy to be feeling well now that I am in no rush at all. Good luck and let me know if you have other questions about the flap.

 

[DCCrohns]

I had advancement flap surgery two months ago today, after trying meds combined with other procedures. Sadly, it doesn't look like this was my last surgery, as the larger fistula is back (albeit smaller).

My CRS brought in a plastic surgeon for my procedure. They chose not to do a temp ileostomy to start, although it may come to that.

I'm not going to lie. My recovery was rough, and I have been through many surgeries and consider myself a tough patient. I think the biggest challenge (beyond pain management) was mental, as I felt worse for many weeks than before the surgery.

I had gone off Humira to help with the healing but am now back on. Right now it's a waiting game to see how my body nets out, but they will likely to another advancement flap this summer. One positive is because the tissue that has already been moved has been able to form new blood supplies and there's extra, the surgeon thinks it will make the next procedure better.

Best of luck to you! I hope you have success but, if at first you don't succeed, know that's not the end of the road!

 

[justbreathe8]

Thank you, I appreciate your stories! This will be my 5th surgery, and I'm hoping my last. I got one seton on halloween, one the beginning of december, and the last one two weeks ago. Both the surgeon and the infectious disease doctor will be there to look at the tissue when they go in there. The surgery I had two weeks ago, they found bacteria that is resistant to cipro which is why I am on the IV meds right now. I feel like the drainage is a lot less then all of the other surgeries, so Im hoping the med is working. Im not sure how many procedures he has done, I was excited that the said that I'm ready for the last procedure, and i forgot to ask him. I have to call him tomorrow about scheduling the MRI so I will make sure to ask him then. But I do trust that he knows what he is doing. I guess the only thing that worries me is that I still have a swollen skin tag, but it seems to be the same one that has been there for 6 months, and he has never seemed concerned about it. Im just super nervous about the next procedure. I plan on just laying in bed all day for as long as it takes for it to heal.

@dgg- thats great news that you think it worked and that you are doing way better then before! After 5 months, how are they not sure yet? how long does it take to know for sure? Did your surgeon take out all 3 setons at one time?

@DCCrohn's- I remember talking to you when you first had the flap done, because it was about the same time i had my second seton put in. I think if this doesn't work, his next step is the temp ileostomy, so we will see what happens. Yes, the mental part is definitely the hardest. I don't think I've felt "normal" in about a year. These issues are very draining emotionally and mentally. Im sorry that your procedure did not work. Im sure your very frustrated at this point. At least its good news that the fistula is smaller, and that there are new blood supplies forming. Hopefully that will help with your next procedure. Thanks for the encouragement. I have many days where I feel like Im at the end of the road.

 

[justbreathe8]

@dgg and @DC- did you guys have any drainage from the setons or pain before you had the flap surgery? Or had all of your drainage and pain completely stopped and that's why they decided on the flap surgery?

 

[dgg]

In my case the flap has definitely worked but the reason I am hesitant is that I have Crohn's so I'm just nervous and I still have my ileostomy. I think the real test will be what happens if I get my ileostomy reversed (which I don't want to think about for a few more months). I am also still on remicade and likely will stay on that to help maintain fistula closure. My surgeon told me that it normally takes 6-8 weeks to heal after the flap and that by then they can tell if it has worked. They took out all 3 setons at the time of the flap and I still had drainage for a little while after the procedure, but then it was less and less and finally stopped.

Before my flap I still had some drainage and a little discomfort but not a lot of pain. I kept having granulation tissue that would form and it was very sensitive so I had more of a stinging sensation and my surgeon would burn it off with silver nitrate.

I agree with both of you posting here that dealing with fistulas and pain can really affect you mentally. For me I would get my hopes up then be disappointed over and over each time my setons were cleaned out or replaced. It's hard to find others who can really relate which is why I find these forums helpful. For me I finally got to a point where I never thought it would get any better but finally it did. I had never had any issues mentally before this and I'm a very upbeat, stable person but I did get to a point where I felt I couldn't take it anymore. Fortunately it got better and hopefully it will for you as well. Keep us posted on how it goes!

 

[DCCrohns]

Before my flap surgery and when I had setons, I did have drainage. The setons ensured I didn't get any infections, etc. though. Sadly, my larger fistula passes stool and I have to be very careful as to what I eat, as things can easily get stuck and back it up.

Like dgg, I was told drainage post advancement flap surgery was normal. Sadly, mine didn't take so it has continued but I'm luckily the exception and not the rule!

 

[justbreathe8]

dgg, oooh okay I understand now why you don't know if it worked or not. well, I hope that it did! and yes, speaking up ups and downs, my surgeon just called about an hour ago and said, surgery for thursday is off, and we will reschedule for…. 6 MONTHS!! wait, what? Im so disappointed. He said he talked to his mentor and a surgeon who he trusts and showed him my case and he suggested we wait it out about 6 months and let my body heal as much as it can. Totally bummer and really upsetting. 6 months is a big difference from two days from now. I used to be upbeat and happy as well. I feel like that part of me is long gone. But its good to know that it will come back, as it has for you! The surgeon is going to take the picc line out on friday though. I suppose I can be happy about at least that.

DC- if you don't mind me asking, what kinds of food do you try to eat and what kind do you try to stay away from? I feel like one of my fistulas passes stool as well. excuse the grossness, but Ill occasionally find a kiwi seed, or sesame seed, or banana fibers when I change my gauze. It would be nice to know if there are foods that would help me feel better.

 

[DCCrohns]

Yes, all of those are issues. I have to avoid most veggies, even when cooked (smashed is okay), anything with skin (apples, potatoes, tomatoes), spicy foods, nuts, etc. I still like pasta with tomato sauce and cheat on the spicy sometimes, but I know I'll usually pay the price.

 

[justbreathe8]

Okay thanks For the tips! And say you do eat them and something gets stuck, does it cause pain and then eventually come out? Or what happens?

 

[DCCrohns]

Before surgery, things would occasionally get lodged. Sometimes they would be partially coming out or close enough that I could help extract. Otherwise, it usually was sitz baths and a bit of a waiting game. Skins from fruits and veggies and veggies themselves were the biggest culprits. Not fun stuff.

 

[justbreathe8]

Ooh okay thanks! I will try to avoid those!

 

[dgg]

Too bad about needing to wait 6 months but it's true that you need to have to be as healed up as possible. I know that in my case the first step was to get rid of any proctitis which took some time. I spoke to a few doctors who all told me that the success rate will be much better if things are healthier inside. It seemed like it would never happen and I remember being in tears when I heard it might take a year of living with setons. It ended up being much longer than that and now a year sounds like a short period of time but hopefully the end result will be much better by waiting. Keep your chin up and think of the possibility of living without discomfort in the future. It will seem like a long 6 months but you'll get there.

 

[justbreathe8]

Yah, it makes sense that the healthier it is inside the better off ill be. I think the main reason I am so upset to have to wait is bc I just turned 30 and my husband and I planned on trying to start a family when we were 30. Now that will have to be put on hold for a year most likely. All my friends are getting pregnant, and it's hard that I'm not bc I have this stupid problem. So frustrating!!!!! Thanks for the encouragement, I need it.

 

[Jajabinks]

Hello everyone, I found this thread interesting since I too am now dealing to peri-anal crap (really depressed about it). Lots of throbbing on my buttocks and around that area. My butt bones feel strange when I sit. What are your doctors doing to treat your proctitis/inflammation? I am going nuts!

 

[Jajabinks]

I had never had any issues mentally before this and I'm a very upbeat, stable person but I did get to a point where I felt I couldn't take it anymore. Fortunately it got better and hopefully it will for you as well. Keep us posted on how it goes!

For the first time ever, I felt I desperately needed a Xanax. I too am such a high-spirited and upbeat person! I just can't believe how much this is affecting my mental health. I did read some studies on peri-anal Crohn's and it stated it has a big effect on mental health and quality of life (based on statistical data). I guess our feelings are not uncommon....you are not alone...

 

[justbreathe8]

I know, right?! The mental part of it sucks! And what sucks more is seeing all these happy people everywhere doing whatever they want and I can't. My doctor suggested taking ib profin for the inflammation. He also prescribed me a med that you take when you are on ib profin long term so you don't get ulcers in your stomach (that would be the icing on the cake) I was taking 400 mg a day and I think it really helped. I did an experiment and took it some days to see how I felt, and didn't take it and see how I felt. It seemed like the days I took it, I felt less "swelling and pressure" down there and it seemed that I drained faster when I took it and was more comfortable because of that. With me, every morning when I have a BM, about an hour or two later I feel it swell up and then throughout the day as it drains the pain gets less and less until it's not even there. By the time I go to bed i feel decently good. But then I wake up and it starts all over. so maybe try a couple ib profin and see how you feel

 

[justbreathe8]

Oh yah, I also do sitz baths about 4 times a day. That's the only way I can keep everything clean

 

[Jajabinks]

I read a thread on here somewhere....the person soaked their hiny in a tub of epsom salt for like an hour a day and sat on a heated pad for like two hours everyday. They said their fistulas healed and closed! Don't know if it is something you are willing to try. Does it sound logical to you? I wouldn't know since I am new to this NIGHTMARRRRREEE!!!

 

[justbreathe8]

That wouldn't close mine because I have 3 setons in then which prevents them from closing, it keeps them draining. But I think every person is different. It could be worth a try for you. But I would def recommend sitz baths if you arent already doing them. It also helps pull out the gunk that's in there. I've been living this nightmare for the last year. It's almost like there is no solution

 

[dgg]

In my case when I first got my abscess (which turned into a fistula) I used to suffer from constipation so to help treating the proctitis I started taking miralax daily to make things softer. This really helped along with being on remicade and cipro/flagyl combo and after a while my doctors told me that things looked healthier on the inside and that there was no proctitis anymore. I have crohn's so I don't know if you don't have this then there might be other medications that doctors would use.

I also know what an absolute nightmare fistulas can be and I felt like my life was taken away when I was dealing since I was always in discomfort and had disgusting drainage coming out. I doubt that just sitting in sits baths and heating pads will do much to make your fistula go away since the root is internal. It might help with the pain though. Hope everyone starts getting some relief soon.

 

[DzdNCnfzd]

I had an advancement flap procedure six days ago and the discharge (feces and blood from both ends) is worse than before the procedure. If the surgeon covered the inside hole of the fistula, I don't understand why I'm still leaking so badly in the front. Is this normal?

 

[Thisisnofun]

DzdNCnfzd I would love to know this answer also. I also had the flap repair done 5 days ago, and also am still having discharge, including feces, out of the fistula exit as well.

 

[Sorebutt26]

I had an advancement flap procedure six days ago and the discharge (feces and blood from both ends) is worse than before the procedure. If the surgeon covered the inside hole of the fistula, I don't understand why I'm still leaking so badly in the front. Is this normal?

I've pm'd you x

 

[justbreathe8]

When I had mine, mine was also worse at first. I was very worried that it didn't work and I called the surgeon and went in and he looked at it and said it looked good and I still didn't believe him. I think I am 3 years post surgery now and I haven't had any problems since.

 

[Allymedic]

Does anyone know how long a fistula is meant to drain post mucosal flap advancement? I'm 13 days post surgery. I have less drainage than before (but I'm also taking 3 baths a day so it's hard to tell). I have noticed i am passing gas occasionally through it. Does this mean it's failed? If it's closed from the inside how could stuff possible pass through?
I'm really anxious to get my life back

 

[DCCrohns]

It can drain for a while, so they likely will give it more time before considering it a failure. My understanding is that while sometimes initial post-opp healing occurs, often times items a secondary healing process that needs to happen.

I know it is disconcerting to have things passing (I've been there) but they do have to leave it partially open to avoid infections, etc. Just keep up with your hygiene and keep a log of the changes you notice (good and bad) so you can communicate them clearly and regularly with your doc.

Hang in there!

 

[justbreathe8]

I don't remember how long mine drained for after, but it definitely still drained and I wondered the same thing, if it had failed if it was still draining. And it didn't fail, so I wouldn't worry yet. But you could always call your doctor and ask. I think after 2 weeks when I went it he was able to tell if it was healing correctly. Just keep doing what you are doing. Although if I remember right, I wasn't doing the baths as often after I had the procedure bc my doctor said not to. Id have to go back and read my threads on here.

 

[Allymedic]

DCCrohns and justbreathe8
Thank you so much for your replies. I have spent hours upon hours trawling through the internet looking for some reassurance/signs of success or failure. Mostly I've found a lot of horror stories.
I didn't see a Dr after my surgery, all i got was a generic colorectal surgery info brochure with 3 instructions scribbled on the front- 2 weeks off work, salt baths 3 times a day and follow up in 6 weeks.
They didn't even tell me i would pass a sponge the next morning - oh goodness i was mortified and terrified!!
But thank you, it makes me feel better to know others still had drainage so maybe all is not lost. It's a crazy emotional rollercoaster this fistula business and I'd like to get off it as soon as i can.

 

[justbreathe8]

Im sorry that they didn't give you any more info! Especially after a surgery like that. I researched and researched and didn't find any info either. Thats why I made sure to post my story in here so that hopefully it would help someone. Its a terrible thing to deal with and theres not alot of people that understand the pain (mental and physical) associated with it unless they have been through it. You could always call the doctor and ask to come in sooner. At least that would ease your mind a little bit

 

[DzdNCnfzd]

Unfortunately, my flap procedure failed almost immediately. It got to the point that I couldn't keep any food or liquids in my system so I became very dehydrated and ended up at the emergency room. After a nightmare week in the hospital, I ended up having a colostomy, even though I had sworn to never go that far. It's the best thing that could have happened to me. I have my life back.