About the Author

Hi, I’m Leah!

I was diagnosed with a perianal fistula several years ago, and started this site to share what I’ve learned and help others cope. Please note that I am not a doctor, just a former patient. Always talk to your doctor about any serious questions or changes you are thinking about making.

I am an artist, a writer, and I make candles and soaps. I love horses and ponies, dogs and cats, and most animals in general. I live to learn and find meaning in what we go through here on Earth.

If you would like to contact me personally with questions or your own story, please shoot me an e-mail at fistulasurvival@gmail.com; I would love to hear from you! It could take me some time to get back to you, but I do read all e-mails and try to respond.

29 thoughts on “About the Author

  1. I love this website. It is so helpful. Thank you for helping answer so many questions that people have. Keep up the good work!

  2. I will now look forward to reading every new entry…you’re a silver lining in this shitty nightmare of a storm. Pun absolutely intended.

  3. Hi thank you for the info. I tried to find how you finally got rid of the fistula but I couldn’t find it. Was it the flap that cured you but I thought that didn’t heal?
    Yes the tunnel of doom and despair is a perfect way to describe this awful awful condition 😦

    • The advancement flap finally worked, but Dr. Tracy Hull at Cleveland Clinic used a newer method in the after care. I remained in the hospital for four days with a suction tube in there that helped the tissue really adhere afterwards. I think that is what made the difference, because the two I had before that failed.

  4. Thank you. I’m glad you got rid of it. I haven’t unfortunately. This is surgeon nr 3….I was going to have the LIFT surgery first but then it wasn’t an option and got this awful seton. With surgeon nr 2 he couldn’t communicate and was impatient. Now I’m with surgeon nr 3, he placed again a new seton and in a couple of weeks I’ll get a fistulomy or a flap but he allready told me a flap will probably not be possible because the hole in my anal canal is too big although the fistula is small. I’m at my wits end really. I’m also suffering severe migraines and getting more and more depressed. Surgeon told me I might experience incontinence for gut liquids after the fistulomy. I mean what??? I don’t want that !! I’m allready leaking 24/7 with yellow wound substance. This ‘rathole’ has ruined my life completely…

    • I am so sorry you are going through this! It really is a special kind of hell. If you are on Facebook, and would like some moral support, we have a private support group there: https://www.facebook.com/groups/358870000816764/

      Don’t lose hope! If you have to, get a second and third opinion. It took three years and 7 surgeries (8 if you count the initial surgery) to close mine. Some are trickier than others. I know how scary it is to think that you may have continence troubles, but keep in mind that they have to warn you about the worst case scenario. This will not necessarily be your outcome. I was also told I may have to live with incontinence, but I am okay. Please consider joining our support group. Everyone there understand what you are going through, including the depression. Sending good thoughts your way!

      • Thank you again. I’ll consider to join the fb group but I’m in pain all the time so can barely sit not even on a donut cushion and typing on my phone while laying down caused me serious neck en shoulder problems after a year. I’m witnessing how my life is falling apart day by day. Just staying around for my daughter for the moment but I honestly don’t know how much longer I can deal with this.

      • Are your doctors aware of the amount of pain you are in? It sounds like your pain needs to be managed more aggressively. I know how hopeless it feels, but it is worth it to keep fighting, keep going. Every day they are making advances in techniques, and sometimes it just takes a long time for them to fix it. One of the reasons I wanted you to consider the group is that this disease is very isolating, which worsens the depression. I understand you are in too much pain to deal with the phone, but it might be time to reach out for some help with dealing with the emotional side of this disease. If you can, you might want to check the NAMI website to see what resources are available in your area. Please feel free to contact me as well if you need to talk. I know very intimately how damaging this disease is both to the body and the mind. You are not alone, and you CAN survive this.

  5. Yes this new surgeon is aware that I’m in a lot of pain but the oxycodon and tramadol make me even sicker than I allready am and all the painkillers are worsening the migraines and I can’t sit for hours after I had bowel movements so by the time its evening I able to sit more or less. Thank you for trying to comfort and help me.I live in the netherlands. I’ll keep you updated

    • Oof, yes the pain killers made me sicker as well. Are you using a sitz bath? A small tub that suits over the toilet, and you fill with hot water, then just sit on it and soak the area. It might help relieve pain after a bowel movement, and helps with drainage. Please do keep me posted.

      • No not using a sitz bath at the moment. I did a few times but I always got anal spasms afterwards that lasted like 15 minutes or so.Don’t know why that happened and the doctors didn’t know why either so I quit doing that.

      • Oh wow, I’m sorry you can’t use a sitz bath even! Maybe it’s from the position you sit in to use it? Can you take regular baths, or does any kind of soaking cause spasms?
        Just in case, I found this info just in case you ever need it (i realize NAMI is useless if you’re in the Netherlands). If things get really bad, reach out for help. https://www.113online.nl/

  6. tnx tnx tnx very dear leah to starting this site..it has been so helped me… i have a anal fistula since 2011 and i am so happy to read your advises and experiences about that….i scare from surgery becauz it will hurts sfincter and its 50-50 to heal….and also im in iran and here curing this is not not by update methods…you know only fistulotomy….. i really hurt by this fistula physically and psychologically too…. plz up your site and be in contact with me if u have any recommendation n suggestion to overcome this f… disease… tnx a lotttttttttt


  7. Absolutely love this website. Only my husband knows what I’m going through at the moment with a fistula (after surgery for an abscess) – I’m awaiting surgery for a fistulotomy with seton. Anyway I just wanted to say how much better this website has made me feel and what a good thing you are doing making this all feel a bit more normal!! Xxx

  8. Glad to find female support. No one really knows what this is like except those going through it. I was dx with a high/complex anal fistula and had it drained with a seton placement in Feb 2013. I’ve been living with the seton ever since. The first few years were the hardest, and then it calmed down, however, when I menstruate it can act up. Like today. It’s horrible. I’ve made an appointment with my Dr so I can try avoiding my period with birth control. I’m in menopause, so I occasionally get a period and this time it’s a doozy + seton irritation/pain. I’m supposed to go on a very, very long car ride for vacation tomorrow! The timing is awful. Anyway, I’m happy to find all of you and get and give support for this horrible chronic pain.

    • Thanks so much for reading and sharing! If you haven’t yet, check out the post with links to my support group(and another women’s fistula support group) if you’d like to connect with others going through it. 💕

  9. So glad to finally find a website like this. I was starting to feel like the only person who had been through this.

    I’ve had my fistula since 2012 and I feel like my surgeons have pretty much given up hope of it healing. They’ve passed me onto another department and no one can conclude what caused it or what will heal it.

    It all started when I got an apprenticeship (such bad timing!!). I was in a lot of pain but assumed it was a bruised coxis. After about ten day I ended up in bed, feeling very ill and being in too much pain to walk. Turns out the abscess had gone inwards and gave me blood poisoning. I ended up being in hospital for a week.

    After that 8 weeks of being off work, and a few more weeks for it to hella, we thought it was gone: But it returned.

    I went back for another operation and had a seton put in. After that opened it several times to clean it, tried a “plug” and 8 operations later I now I’m on infliximab (though I have no other symptoms of chrons!)

    I’ve got to a point where I want to give up. I use cavilon to stop the seton rubbing but sometimes it still does and I end up on the sofa on my front. Makes me feel like I’m not normal and I can’t just go out and do things I’d like to do.

    Wish there was an easy solution! Thought having a look through this website has made me realise I am not alone.

  10. Hi ladies,
    I had this real “pain in the ass” fistula 2 years ago just end of chemotherapy(dx BC). I was hospitalized for 4 nights due to high fewer and DOctors and I didn’t know what was the reason. I decided to have a surgery after 2 years to hopefully solve the problem. My surgery is this Friday and I don’t know what I should expect after surgery. How long should I take time off? How quickly it heals? I guess everyone is different.

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