Fistula advancement flap surgery

Hey Dimitri, I really hope this helps you and many others prepare for and deal with their surgery.
I know everyone experiences different things so I just want to tell my story in the hope it gives others an insight into what could happen. When I read about the plug I couldn't find one success story... but I think a lot of people come online to seek answers after something has not worked or gone wrong for them.

If I update every day then others can see what I was eating, what my pain levels were, how my BM were instead of me trying to remember 6 months down the line.

Please post your progress as it will be nice to keep updated with your progress. I wish you the best of luck with your surgery and I also wish you a speedy recovery with as little pain as possible.

Hey guys so I have a question that may sound really random and I will ask it at the end of my update...


So it's now 11 days post op and I feel different every day. Most of my pain comes in the evening before bed. My wound on my butt cheek seems to continue to drain however it's gets very painful as in a sore pain and bubbles up almost like q blood blister. I have been taking ibuprofen just to keep any swelling down however it doesn't alleviate my pain of the wound. It is a lot less painful when having a BM now ( thank god) I'm not sure if it is a good or a bad sign but I still try and do the same as in drink Miralax before bed and then not really push to have a BM.

If you have a sensitive stomach about poop please stop reading this now.

This is my question, for the last few days my stool has been soft which is great but I always look to make sure there are no signs of anything major going on, I have found that my stools are flat. I don't really know how to describe it, but not as in pancake flat but not rounded like we all know stools to be. Has anyone else has this with their stools after this surgery?

I will be mentioning it to my CRS I just thought I would see if anyone else had this.

Speak soon

Lol you just never know ;)

I will speak with my CRS about the blood blister type thing because 1 it gets really sore and 2 it could mean something. It still drains it just appears to have gone back exactly how It was before my surgery except I don't milk the wound and no fecal matter is coming out of it at the moment.

I'm dreading this not working I wont lie. I'm a complete stress head nowadays. I just got my work and travel permit for the US and I would really love to be able to work and travel back and see my family but I wouldn't even be able to sit on a flight for 1 hour let alone 11 and haven't been able to since this all started.

I could tell him to do that I think but it's something that I would like sorting. The seton was uncomfortable especially when it span round and the knot either ended up inside my anus or inside the wound. Spinning it back round was uncomfortable to say the least. Also when mine drains I get a lot of pain on the other side which my surgeon believes it is draining to the other side. When this happens I feel I may as well give up on life because it's just so painful. I can't sit so I can't drive. I live to drive! I love driving so much!

I have just changed my gauze and it has a darker brown discharge and a lighter discharge on top. It doesn't hold the same smell as fecal matter but I'm so worried it is and this has failed already. My world will be crushed again :'(

I don't have much pain when going to the toilet nowadays the main amount of pain I have is from the darn wound that is puffed out like a blister still. Ibuprofen doesn't help with this pain whatsoever.

I feel so miserable and worried. I think i need to take a trip to the quacks about my mental health if I'm honest because this has really ruined me. I feel like if I do that I am admitting that not only do i have control over my health or my life but no control over my mind either. It probably sounds extreme and you will have to excuse me but I moved to the US to be with my wife and this has made it hell. I'm in a foreign country with no home comforts. My wife has been great truly she has but I think even she is fed up with it now. Plus I have put her in so much debt to pay for my medical care I feel terrible. I am consumed with guilt

Hey guys so i had my 2 week post op follow up with my surgeon yesterday. As expected he said he wouldn't do an internal exam as it was way too early and they can only judge whats going on by signs they can see.

He said the fact that my wound basically blisters up is Okay, it should go down on its own but if not he will put silver nitrate on it. He said i was in too much pain to do it yesterday, his words were if i do it today you will kick me head lol . So i understand his reasoning. He is someone that when he is examining me and he can see its hurting me he's very apologetic. Genuinely Caring man.

The drainage has decreased from what I had after surgery and I showed him a picture of my gauze with what I said I couldn't tell if it was fecal matter or not. Come to think of it he didnt say if he thought it was or wasn't. But he did say after my exam and seeing pictures that even though it was too early the drainage decrease is promising. He has set my next follow up for 4 weeks.

He reassured me that not having a BM every day is fine and no one is going to achieve the perfect poop. But the most important thing is to try and keep it soft. Not hard and not runny so i will keep taking Miralax on the evening as this seems to be doing the trick.

My pain after a BM has gone, now although it's good because no one wants that pain, I am not sure if it is a good or a bad sign that now i feel no different to when I had the plug. Apart from I don't get the fecal matter come through within 2 minutes of having a BM and it doesn't feel like someone is pouring acid through my body.

I guess I will wait and see but im trying to stay hopeful :thumbs:

I am wondering if the brown is just dried or older blood that is finally coming out? Most women get that a lot whenever they start or stop a period, so it's not uncommon for older blood to be brown.

Itching is normal for healing, interestingly enough. My 4yo is always scratching at her scabbed knees (she is a wild little thing that loves being outside barefoot).

I am not sure if this is the same, but when I had my plug surgery, the stitches were dissolvable, so they would pass through as the dissolved and fell out, if that makes sense.

I've had two different setons put into my fistula. I took the first one out when I started Remicade to try to get it to heal, but I kept getting c. diff. so it couldn't heal. Then I had it taken out the second time after it had been in for a couple of years to try the plug surgery, which failed. But by this point it is a lot like a pierced ear - the skin all around it is all healed it up, so it won't close itself. I don't have anything in it, it doesn't re-infect or close, and it doesn't really drain unless I'm having a ton of really runny diarrhea (like a colonoscopy prep). The only other times I have issues is occasional random aching that doesn't last long, trying to hold in gas (it'll pass through the fistula), and if intercourse is at an awkward angle (it's a recto-vaginal fistula that's lower on the sphincter muscle).

I am so sorry Zoe.
I am sure mine has failed as well. I have tons of drainage (more than before surgery). It is more liquid now, white yellowish with less blood now ( very little).
I am hoping this drainage will decrease (supposedly serous exudite can continue for up to three - four weeks )and then stop,but this does not look probable in my case. I am not sure whether i have pus or serous with pus. I will see my surgeon on Monday.
Only God can help me through this. I don't want to lose hope, I have three angels, kids who are watching their father through this. I hope I can make them proud and not ashamed through this ordeal.
If this fails one ought to figure out the next step. That's the only way. We owe that to our peple: keep trying!
I also have to appraise my CRS if this fails. Have you had all your surgeries / setons eith the same CRS Zoe?

Post Edited (Dimitri71) : 10/28/2017 4:29:02 AM (GMT-6)

Hey Dimitri, I really hope your surgery has not failed and I'm sure your children are very proud of you for going through such a big, life changing medical issue and staying strong.
As scifi says too, it's the support of others and a change of mindset that gets us through these things. I couldn't imagine going through all of this without my wife. She has been and continues to be an incredible support to me. She had no idea that less than a month after getting married that she would be putting her vows to the test, lol. In sickness and in health! I know this must be hard for her too, to witness me in days where pain is high and my mood is low, not being able to go out and do things together, financial difficulties and everything that goes with an sick partner.

To answer your question Dimitri, yes all my surgeries have been done by the same CR surgeon. His name is Dr Kim. 3 days after having my plug surgery I had a white thing sticking out of my wound. I was convinced it was not normal drainage as it was thick and almost like stringy. I called them but I knew my surgeon was away on his hollybobs so I had to see his partner. Omg I hated her, she was rude and didn't attend to my needs as an individual. I know everyone is different but I was in pain and scared. Every time I have to see someone about it my heart rate goes up, I get sweaty and feel very anxious. She started messing around down there with no warning or telling me what she was doing (personally I like to be warned and constantly told what to expect) she was like no it's drainage everything's fine and basically made me feel so stupid for worrying. However I tried to wipe it off and when I basically pulled on it a little, I could feel it was very much attached inside my rectum. I believe it was the plug but almost already degraded. So I believe my plug failed after 3 days and she was retiring so didn't care.
Point to that story I guess is that I really like my surgeon and I trust him. He understands my needs and has the most amazing bedside manner.

Scifi, I totally get what you're saying about the mindset. It's almost like thinking to yourself well my body is my body I can't physically change anything medical wise however I can change how my mind views my situation. I think to a degree I have come to term with what I have but at this point i am no less desperate to get it sorted if you know what I mean.
I think it's the little things in life that no one tend to think about when they don't have this that I miss. For example when you want to let out a toot because your belly is rumbling but if I don't sit on the toilet as if I am about to have a BM it will come through the fistula. It sucks! It stings like bees.
Miss being able to have a normal bath and soak (I'm a bath not a shower kinda gal) lol.
Being able to sit comfortably long enough to get my hair cut.
Just things like that. I'm not the best looking person but I used to really take care of myself. Hair cut and eyebrows waxed every 2 weeks. I don't do these things at the moment so I don't think that helps me because i don't feel human.

I guess that's enough of my sob story i need to get a grip haha.
So over the last few days I have had quite a bit of drainage but none of it has seemed like fecal matter so I guess that is good. Today I slightly pressed on the other side where I used to have to press to get it to drain and it was like I turned on a tap. It was a browny green colour so I would say at the very least there is still an infection in my fistula. They have put me on many antibiotics over the last 7 months which none of them have worked.

I have a question for you guys which it might be totally unrelated but have to ask if anyone has experienced it.
So I have a pain that I thought was related to the fistula but It may not be. I get the pain when I go from sitting down to standing up. As soon as my butt leaves the seat I get a horrendous pain in what I believe is possibly the coccyx area. It's so bad I struggle to stand up. I am asking because I think if this is not related to the fistula then I have a serious spinal issue going on too. I am thinking it could be related to the sciatica that I have had for almost 12 months constant. There has been no break for me with sciatica at all but this seemed to start after I had the fistula. Do you guys think it is more likely to be related to the sciatica and spine rather than fistula?

Zoe, I have experienced a similar type pain myself - usually this is right before I have to go in for an incision and drainage surgery. Not sure if this is the same as yours, but for me sitting down gently is ok although still slightly tender. But the real pain is when I get off my chair, and yes in the coccyx area for me as well. For me this generally indicates an abscess that has re-formed and usually in the same place. I'm not too familiar with sciatica so I couldn't say if this was related.

I agree. I've been dealing with this for almost two years and only have had one MRI. Tried to get another, but the surgeon was reluctant. In terms of cost, an MRI is more expensive both in terms of insurance cost and out of pocket cost to you - but not so much that a CT scan is always the first option. Regardless, I've already had 3 CT scans from previous CR surgeons and trying to avoid having too many. Unlike MRIs, CT scans use radiation to perform the test - a lot more than what you would be getting from a dental x-ray.

I'm in a similar situation myself. For the last year I've been dealing with weird muscle aches and pains in my hip joints, butt, and thighs, that sometimes creep down my legs. Freaks me out a bit. Got one MRI last year that turned up nothing. But it's gotten worse. Tried to get another one, but no dice.

Hey guys so it's been a little while since I last gave a update on this fistula surgery situation. Unfortunately I don't think this is a case of no news is good news, I just didn't want anyone to think I was posting too much.

So it's Friday and on the coming Wednesday I will be 6 weeks post op and this is how I am now...

So before surgery when I had a BM I wouldn't get pain while actually having a BM it would come about 5 minutes after and it was excruciating. Fecal matter would come through the fistula and out of my wound and it was like someone was pouring acid through it, it was hell!
Now post surgery i still don't get pain whilst having a BM and after seems to be okay too which is the only thing that brings me a little ray of hope.
I still have times where I have extremely dark brown drainage which doesn't smell like poop but has a very distinctive odour which I cannot describe. I don't get it often but tonight I had it so really not sure what's going on down there. I will literally have dark brown drainage and then when I imediately milk the wound it goes from dark brown to a yellowish greeny colour mixed with blood and the drainage is most of the time extremely thick. I still get it sometimes where it bleeds a lot and have blood clots exit the wound.

I also still have the major issue that the wound swells up like a big blister and this causes me to have horrendous pain. It got so big the other day it was like a large marble stuck in the crator on my now diformed arse cheek. I don't understand why it swells up like the drainage can't escape when it is still actively draining at the time.
I sometimes have days when the drainage is not very much at all and my pain levels are low. I actually had 3 days of being so hopeful as the drainage was very little and the wound was not swollen at all, it looked great (considering it will never look good again if you know what I mean) my pain was still at about a 5 or a 6 but still I was chuffed that it looked to be doing well then boom, what I believe was poop passed through, it looked like it and smelt like it too. I was so bummed (excuse the pun).

I still try to keep my stools soft and take Miralax every other day and now I just eat what I want. No portion control, I have no control over anything haha.

So all in all, do I think this has worked? Answer is no i don't. It's hard to stay hopeful when so little has changed in nearly 6 weeks. I would expect more improvements by now. I could be completely wrong but I just feel in my heart that I'm not fixed.
I have my follow up on Monday so we will see what the surgeon says when I show him my million and one photos. I have taken a picture every time I take the dressing off as it has usually changed within the 4-6 hours, I don't want him judging just by what he sees on the day of my visit.

So for anyone having this surgery that is concerned about the pain from the surgery just like I was this is what I found...
The pain whilst having a BM was bad I won't lie, but only for about 7 -10 days after surgery. Bear in mind that I wasn't able to poop for 3 days. Nothing worked for me apart from Miralax which was recommended by my surgeon. The pain to me was like someone was ripping my insides out of my butt, I cried like a baby the first time I went but my stool was hard. I regretted not calling my surgeon sooner or asking the back up plan if Colace and Benefibre didnt work the day of my surgery. My fault and maybe my pain wouldn't have been so bad.

I will update after my appointment to let you all know what he says...

Speak soon