What I have learned living with a fistula-in-ano & how to cope!

Posted , 9 users are following.

I just wanted to share my story in hopes of helping others.

I had a perianal abscess starting December 3, 2017, "healed" but identified a fistula from a pinpoint opening -- had the E.R. surgeon say to come back in 4-6 weeks to check (he said it was still healing) and so I got a second opinion. This surgeon "bet the house" it was a fistula -- and it was.

Here is what I have learned:

1.) Please consult a colorectal surgeon to diagnose an abscess of fistula. It is worth seeing a specialist who understands the colorectal system. An MRI or fistula probe in the O.R. is typically required for fistula diagnosis.

2.) You didn't do anything wrong. This isn't your fault. It can happen to anyone -- the young, the old, the healthy, those with co-morbidities, athletes, those living with Crohn's disease...it runs the gamut. In my personal experience I think stress lowered my immunity and my body wasn't able to fight the infection that lead to the abscess.

3.) Know the facts. 50% of perianal abscesses end up as fistulas. You can't prevent it, it is the luck of the draw. If you end up with a fistula, it isn't because you did something "wrong." Some surgeons will try to minimize those rates probably to comfort patients but providing inaccurate data isn't helpful. Do your research in selecting a surgeon and understanding your condition.

4.) Understand your options when it comes to fistula surgery. All fistulas are different -- simple, complex, high, low, horseshoe, where they cut through muscle, etc. A draining seton will allow for continuous drainage to help prevent an abscess from reforming. This also buys you time to consider surgical options such as:

Fistulotomy (cutting open of the seton; > 90% success rate but risk of bowel incontinence)

Fibrin Glue or Collagen Plug ( < 50% success rate but no risk of bowel incontinence, can start here and move to other procedures if it fails)

Cutting seton (I don't have stats on this but my surgeon recommends against them)

LiFT Precedure: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4678674/

Advancement Flap: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4155133/

PERFACT -- I just recently learned about this and it sounds incredibly promising: 


5.) Know fact vs. myth. The cocktail of fiber & stool softener is a good choice to move your stool through your bowel without strain and helps to prevent fissures, etc. Herbs and supplements should be used in consultation with your surgeon -- there is likely little to no medical evidence supporting these methodologies. You can not heal an anal fistula with herbs. Herbs and supplements may help you feel better but only surgery can remove a fistula. 

6.) Baths help! In consultation with your surgeon, find out if and when you can do sitz baths (goes over the toilet and you put your bum in it -- can find them for $10 in drug stores on Amazon) or regular baths can help soothe you and keep things clean. I use Epsom salts and a few drops of tea tree oil (anti-bacterial). Don't go overboard with tea tree oil -- I gave myself a proper chemical burn the other night putting a few capfuls in the tub!

7.) Keep things clean. I tote around a cheap perianal irrigation bottles (a few US dollars on Amazon or from your drug store) as a sort of bidet-to-go and 2" x 2" sterile gauze pads to wedge between my butt cheeks to absorb any pus/blood/stool discharge from the external opening. After my seton placement, I switched to Tucks pads (witch hazel pads) for blotting clean before using gauze. It helps with any discomfort or itchiness. I used Percocet after surgery and switched to Motrin to alleviate discomfort and pain after bowel movements.

8.) You aren't alone. I am a 34 year old woman, married, have never been diagnosed with a bowel disease. I often feel embarrassed and have missed so much work for doctors appointments and surgeries. I try to learn as much as I can about my condition (in my case a low, complex intersphincter fistula in the anterior position resulting from a perianal abscess), ask questions of my surgeon along the way and advocate for myself. I often feel down on myself, humiliated, desexualized. My wife is incredibly supportive and once I wasn't in pain after surgery, we returned to having sex with the blessing from the surgeon. She is so supportive and affirming and understands that this stuff is embarrassing and scary for me because I don't have resolution yet. Identify people who can help support you whether online, family, friends, whomever. This stuff is a bummer (pun intended) and hard to navigate solo!

I wish you luck on your journey to healing.

2 likes, 6 replies

6 Replies

  • Posted

    hello.. thanks for posting that information. I had an internal abscessed hemorhhoid lanced in emergency a few weeks ago. ( most painful experience of my life! Was on antibiotics and it seemed fine.. Yesterday the abscess started to come back.. was able to drain my self. Taking lots of warm epson salt baths.. trying keep as clean as possible. Using non perfume baby wipes . Had phone call with physician today and going on another week of antibiotics. I am really frustrated and uncomfortable. I will be contacting surgeon next week to find out when I can possibly have the fistula treated. Nice to know I am not the only one who has had to go through this.

  • Posted

    Will you please message me. I have a photo that is a little graphic that i dont want to post out in the open. My dad thinks its a fistual but not 100%. Cant get in to the Dr till march.

  • Posted

    Thank you for posting this, I don't feel so alone any more. And I'm glad I'm not the only one walking around with a gauze between my buttcheeks.

    I try to do a sitz bath twice a day to keep the area clean. I also went to various doctor's appointments and even had surgery but sadly it was not successful.

    The doctor said a lot of times the fistula may come back and people "just learn to live with it." He even told me what to do to encourage draining when needed.

    I honestly lost hope to a cure because it seems like doctors don't take it serious. I am 30 years old and have been dealing with it for 2 years, unfortunately I did come to the realization that I need to live with it and have accustomed to enjoying the good days and riding out the bad ones. I try to keep faith that one day they will find a solution to this annoying and painful disease. In the meantime, let's remember we are blessed and things could be worse.

    Thanks again for posting this!

    Take care,


  • Edited

    How are you doing now? I'm on this journey as of May 2021 and am curious. In my case, I have a low transsphinteric anterior fistula. Had an undiagnosed fissure, seemed to lead to an abscess, and then to a fistula (or perhaps the fistula was before the abscess). Anyway, had a fistulotomy in June 2021, but here I am 8 weeks later and it is not resolved and will likely need a redo. Would love to know what stage you're at now. Thanks.

    Oh, I should also note that it has recently started closing off at the external opening and I have to prick it to keep it open...now almost daily. I have been asked to wait another 2-3 weeks until being seen again so that the area can heal more before consideration of the redo. Ugh.

  • Posted

    Thank you for taking the time to write this out. I think it taught me more about what I've been dealing with than months of trying to get information out of various nurses (lovely but limited experience), doctors (limited knowledge but dismissive until you're near septic), and surgeons (the worst to deal with, utterly dismissive and borderline hostile when you try to understand what the hell is happening).

    Just recently found out I have a high anal fistula with an internal opening, this coming after 4 months of daily dressing changes / packing of an abscess I had drained in May 2021. Going to require a seton (cutting kind, if I remember correctly) that the surgeon thinks will be in place for at least 12 months.

    This same surgeon is insisting on phone consultations since the original in-person one a couple of weeks ago, and completely ignored an email I sent to his assistant regarding worsening symptoms early last week. I'm paying for this out of pocket privately because the NHS can't offer me even the original referral to a colorectal surgeon until Feb 2022 and just feeling really angry at how dismissive so many medical professionals have been since I got the original abscess - including now this surgeon who will be getting over £5,000 of my money for this procedure.

    Can't really say just how low I've gotten at various points over these last few months. My wife is amazing at supporting me as she can, but good lord have I often felt utterly hopeless and lost.

    All to say, I can't express how appreciative I am to finds posts like this that shed even a modicum of light on what may be going on down there.

  • Posted

    Hi everybody. I'm glad to find this thread as I am dealing with this very same issue in my 13 year old son. That said, i have a strange question for everyone on this thread but don't feel obligated to answer. My question is how many people on this thread have had the Tetanus vaccine within their lifetime? I ask only because there is absolutely no medical family history of any kind. I have 4 children, all completely unvaccinated BUT my 13 year old. He received the Tetanus shot around the age of three only because of a potential Tetanus scare, otherwise it never would have happened. I am also very well informed of the dangers of vaccines and what they are really intended to do. Knowing what I do now, I never would have given him that shot. All of my children are very healthy with no health BUT my 13 year old. This is his only issue. When I searched for forums regarding this topic, I immediately came across an unusual amount of "German Shepard" sites. And if there is one thing I know for fact is that animal dna is used in most vaccines, if not all.

    Anyway, I appreciate the thread and hope everyone here is well and safe. Cheers

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