Posted 3/30/2021 7:01 PM (GMT -6)
I'm writing this in hopes that my story will give some people out there who are struggling with fistulas hope-- for the past three years I have been scouring the internet for what few success stories there are, so I'm hoping adding mine the mix will be heartening for people. This fistula stuff is a true nightmare.
I don't have crohns, so I apologize that this thread is misplaced, but I couldn't find a better spot to put it.
Quick history before I get into the Advancement Flap experience. I am 25 year old female, no crohn's or other health issues. I developed an abscess after being on antibiotics after wisdom tooth surgery that wasn't properly lanced and, well, got a fistula. I had two failed LIFT surgeries and several setons in between. My second LIFT surgery left me with mild incontinence-- I don't know why, but I have a feeling it's because the surgeon got a little cut happy with part of my fistula. The incontinence is mostly passive-- I don't have trouble holding it but after bowel movements I do leak stool.
Almost 5 months ago, I got an Advancement Flap surgery, and I think I can safely say at this point that it was a success!! I still have the incontinence problems, but I'm getting ready to start physical therapy to see if that will help improve my situation at all (also I take an enormous amount of fiber and psyllium husk every day which helps tremendously, if anyone else is having leakage issues). I apologize if this is a bit long, but I took notes throughout my entire healing process and am just going to share them below. All my notes are kind of raw and unedited, so feel free to reach out if you have any questions!
My recovery was EXTREMELY up and down all the way up through week 10. After week 10 was when I started having consistently good weeks. Up until then I would have good days and bad days-- healing was NOT linear at all, and so I encourage anyone who has gotten the flap surgery not to be discouraged until it's been at least a couple months.
-not too much pain, took oxy the first couple days then switched to advil/ibu
-tons of ***** drainage
-incontinence much worse
-basically same as week 1 but incontinence improving a bit. tons of drainage still and gas passing through fistula
-randomly started GUSHING blood at the end of the week. coming out of my external fistula opening and anus. it responded to pressure so i didn’t have to go to ER. i probably popped a stitch
-much less drainage after the bleeding spell
-much less soreness and pain
-a spot has developed that looks and feels like an abscess. some days it looks more irritated than others.
-still draining a lot but noticeably less
-still have gass passing
- had follow up appointment with my CR and he said i’m healing well. he said he isn’t concerned about the flap failing at this point. he didn't do an internal exam, just external exam. he pressed around the area i told him felt like an abscess and he said he didn’t feel any under the skin building up, and that we should just keep and eye in it but it’s probably just forming scar tissue. he said the gas was normal but there shouldn’t be any stool coming out of my external site (and there isn’t as far as i can tell)
- much less drainage this week and i haven’t passed gas through my external opening all week
- there is still that spot that some days is more tender and inflamed and will drain out of a head that forms and then feel better. im trying not to worry ab it until end of week 6
- after 5 weeks of basically laying in bed, i’ve started incorporating 30 min walks into my days
very little drainage most of the week
- had a difficult BM towards the end of the week and had more drainage and pain than i’ve had recently. still not a huge amount but enough to make me worry
- spot still looks red and irritated and like there is puss below the skin, but it hasn’t swelled up at all this week which is good.
- external opening still has a spot of like raw unhealed skin but is almost totally healed over
- i can’t be sure, but it felt like a tiny amount of gas passed through my external opening the day after my difficult BM but i honestly can’t tell if it came out the external opening or just felt like it did bc of how i was sitting. either way, trying not to worry ab that
- i still feel like i have no idea if things are healing properly or not
- looks ab the same as last week
- still get pretty sore at the external opening after BMs
- it’s starting to look kinda bruised?? like it looks a little blue under the skin. idk what to think of that other than it’s very tender
- still very worried about the small head of puss that appears and drains out over and over. there is a defined head of puss a little to the right of what’s left still open of my external wound and i -think- it’s draining out of that rather than draining out of a hole on the head itself but it’s hard to tell
- had a bit of blood come out of the external opening. just a tiny bit but still there
- was having a really good week this week— head of puss had gone away for 5 days in a row. today thought after a BM i am extremely sensitive at my external opening. it looks black and blue, almost like there is a collection of blood under the skin. super super sensitive and swollen
- had another day where it got very swollen and tender. it’s draining dark yellow puss now. i'm pretty sure the surgery has failed
- after the awful week i had last week, i’ve been doing much better. the head of puss hasn’t come back after those two awful days so maybe it was related to all the drainage i had last week??
- had an appointment with my CRS and he was confused ab the two days last week, but he did an internal exam and didn’t feel an internal opening and he said the external opening was pretty healed over as well. so he essentially was like "yeah it’s healed." WHAT. he said i had a buildup of scar tissue in the external wound that was prob contributing to my pain, so he put some silver nitrate on it to help with that. he said there’s always a possibility i could develop another abscess, and if i did it would prob happen at the external site was bc thats the weakest point, so if that happens to call him immediately to get it lanced to avoid another fistula. SO i’m cautiously optimistic. day by day
- had an awful day the day after my DR appointment. i had a buildup of puss that drained out in the bath and left behind what looked like a blood blister in my external opening. the area they put the silver nitrate on also looked awful and raw and painful. that night the blood blister opened up and drained out a bunch of blood. that was a few days ago and since then things have been looking very very good. no more puss or blood collection, and pain has reduced significantly
- it’s taken me about up until now to feel close to normal. the only time i have discomfort now is during BMs and shortly after. been getting in a warm tub with epsom salt right after BMs and it soothes the area and takes the pain away