Through the Tunnel of Doom and Back Again

Just before my 31st birthday, in July of 2011, I developed an abscess. At first it felt like a sore bruise somewhere near my vagina. A day after my birthday I was in so much pain that I was rushed to my gynecologist for an emergency appointment. She suspected a colorectal abscess, and I was sent from there to Sibley Hospital in D.C. to have the abscess cut open and drained.

A month later, I was still experiencing a fair amount of pain, and I met with the same colorectal surgeon who drained my abscess; she informed me that a fistula had developed. This surgeon, without taking any scans, performed a fistulotomy that same August. The fistulotomy failed, and in September she placed two seton bands in to allow the fistula to drain before attempting further surgeries. By October I developed another abscess, and was rushed back to the operating room for another draining. During this visit, the surgeon discovered that one of the seton bands had fallen out, and that she had missed an entire tract of my fistula during the last operation (she claims this is because they are tricky to spot until they abscess, but this second tract would certainly have shown up on an MRI, which is why I always encourage people to insist on an MRI or flexible sigmoidoscopy examination). She drained this second abscess, and replaced the seton band.

donutleah

I spent the rest of that winter with giant rubber bands scraping my bottom up, leaking poo, and feeling completely in the dark about what was happening to my body. It’s hard to describe the depression I sank into. The seton bands are these thick, plastic bands that actually hang out of your bottom; they scrape the skin, and make keeping the area clean a real challenge. My surgeon was vague with me about timelines, and every time I went to see her I left feeling more frustrated and confused. I finally decided to look for a surgeon who could communicate with me better, and through a friend was guided to Virginia Hospital Center to see Dr. Othon Wiltz. He immediately ordered a CT scan, bloodwork, and a colonoscopy (none of these things had been brought up with my first surgeon), and checked out the fistula with that tiny camera (flexible sigmoidoscopy). This new surgeon decided an advancement flap procedure was my best option. I learned that my fistula was perianal, and read on my chart as “transspincteric anal fistula with internal sphincter defect.”

In May of 2012 Dr. Wiltz performed an advancement flap surgery in an attempt to repair the fistula. This surgery involves taking a flap of tissue and essentially patching it over the fistula tunnel. A month after the surgery, I was still in a lot of pain and discomfort, and my surgeon had a family emergency that called him away to Florida. I was set up with a new surgeon, Dr. Rebeckah Kim. At first I was extremely upset to have been abandoned by my surgeon, and tossed aside to a newbie. After one appointment, I knew that I had lucked into getting a truly gifted and kind surgeon. She immediately sensed something was off, and between my surgery refusing to heal and my complaints of awful stomach cramping, she ordered a stool sample and blood work be taken. Within a few days I learned that I had a very serious case of clostridium-difficile (C-diff).

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clostridium-difficile under a microscope

The summer of 2012 was spent losing a battle with C-diff. I took courses of Flagyl and Vancomycin to no avail, and my fistula was in a state of limbo, unable to heal with the constant infection. Finally, in February of 2013 I met the requirements to participate in a medical trial at an infectious disease clinic in Northern Virginia. The medication I received during the trial finally got rid of the C-diff infection, and I spent the next few months recovering from being so sick for so long.

During those months I was recovering, my surgeon met one of the top fistula experts in the country, Dr. Tracy Hull, at a medical conference. She ended up referring me to Dr. Hull for my final procedure.

It was decided that another advancement flap surgery would be my best shot at healing the fistula, and both of my doctors thought my tissue had recovered enough for it to succeed.

In August of 2013 I found myself traveling with my entire family to Cleveland Clinic for what I hoped would be my last surgery. By the time I met Dr. Hull I had undergone a total of 7 operations under anesthesia. On August 16th, Dr. Hull performed my second advancement flap procedure. She fought my insurance for 4 days of inpatient care, so afterwards I was hooked up to a catheter, and she tried a new (at the time) technique of inserting a suction tube that created an airtight seal for the surgical flap. I am convinced that this suction tube technique creating an airtight seal for the flap was what led to the surgery’s success, and credit Dr. Hull with the repair of my fistula. It took a good 8 months for me to be back on my feet, completely pain free, but the surgery worked!

This journey was rough. In the beginning, being completely in the dark was one of the worst places I’ve ever been. I had never heard of a fistula, and nobody I knew had ever heard of the condition. As a woman, it was devastating to have feces leaking into my vagina for so long, to feel ashamed and gross most of the time. One of the most isolating parts of the journey was not feeling able to talk openly about what I was going through. There is so much stigma attached to those parts of the body. Say the word, “rectum,” and you will either silence a crowd, or open yourself up to ridicule. There is a lot of misunderstanding about chronic illness in general, and the crippling isolation that colorectal patients feel is all too real. There were times that I feared I would never heal, and at the time I thought I was alone. But the truth is that more people go through this than we realize. One surgeon explained to me that about 50% of all abscesses become fistulas, and abscesses are categorized as “common.” I was so far from being alone.

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FB:@fistulasurvival

This is why I share my story, keep my blog running, and moderate an online support group (if you’re looking for support, Jen has a great support group for women). This is why it is important to speak out about these illnesses. We must remind each other that we are not alone in this fight, and that healing CAN happen. We must remember that there is no shame in this illness, and that it is okay to talk about it. There are success stories out there like mine.
Keep fighting. You are beautiful, you are strong, and there is always hope.

Ever in Solidarity,

Leah Ruthe Chatterjee

12 thoughts on “Through the Tunnel of Doom and Back Again

  1. Leah you are amazing. I admire your courage and who you are as a person. Im so proud to be in your circle of friends. I can’t even imagine everything you must have gone through and the pain. You are an angel for sharing your experience & helping others. I love you!

    Liked by 1 person

  2. Leah,

    Your words are very encouraging. I don’t know if you are avail for a chat but I am going through this as well and would really love to talk to you.

    Like

  3. Thank you for sharing. I am in the throes of this, and have had three surgeries since August (1 to drain the complex abscess, plus two for installing draining setons in my complex fistula). Expecting an advancement flap surgery in a few weeks. My job requires a lot of driving and I cannot tolerate much in terms of long driving now due to pain sitting down. What should I expect for pain and recovery post surgery? I only have 23 days of st disability left until I have to go on long term disability and think I will end up losing my position. Any info on flap recovery and how long it took you to recover enough to sit in a car for a long time?

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  4. Leah, Your story is very similar to mine. 5 surgeries of I and D of abscess and seton placements. My 1st surgeon actually gave up on me due to inexperience and I had to start over at square one. Met a new surgeon and I had the L.I.F.T. surgery in Feb. 2016. Drainage never completely stopped so now I am back to having a seton again and weeks away from an advancement flap surgery. Any advice would be appreciated! I’m glad you are healed and doing well it gives me hope in these hard times.

    Liked by 1 person

  5. I am so incredibly thankful to find your blog tonight. I had a baby last August and tore pretty bad. My tear got infected horribly and has resulted in an anovaginal fistula. After 8 months of doctors making me feel crazy, horrible exams and fistulagraphs, I had an amazing appointment today with a surgeon/specialist who knew exactly what she was talking about, had seen tons of women with my same issues and knew exactly how she’d do reparative surgery if needed. Finding your blog is like a breath of fresh air. She said an advancement flap surgery would end up being her method… I will ask her about the suction thing you’re referring to… Could you actually give me more information on it? Thank you so much for being a voice is a dark place for many, especially me! You’re giving me hope!

    Liked by 1 person

    • Hi Rachel,
      I’m so glad you found our blog helpful! At the time, it wasn’t being used very much (i was the second person my surgeon had tried it on), but I believe you can ask your doctor about “vacuum assisted closure,” and if they are still unsure they could try contacting Dr. Tracy Hull at Cleveland Clinic. She is the surgeon who used this method on me successfully.
      Keep hope! It was a long journey for me, but here I am, for years later, still fistula free! Hang in there!
      Best wishes,
      Leah

      Like

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