Living with an open wound since early in the pandemic

I’m 18 and from Seattle, Washington. When we went on lock-down in March of 2020, I began to sit for hours at a time, studying, reading, and eventually Zoom schooling.  I first realized that something was wrong when I developed a painful swelling just above my buttock crack.  I figured that it was from all of the sitting and started using my dad’s standing desk.  But then the swollen area ruptured, and bloody pus oozed through my underwear and pants.  The drainage continued and I finally saw my pediatrician who referred me to a well-respected local colon and rectal surgeon.  She told me that I had a pilonidal sinus and needed surgery.  She told me that she had operated on many similar cases and that I should do fine.

My parents and I felt that this was routine surgery, and that additional opinions or research were really not needed.  So, in May of 2020, I had the surgery.  My parents and I were horrified!  I had a huge hole in my backside.  The hole was almost as large as my fist.  The surgeon told us that the “cyst” was larger, deeper, and more extensive than she had anticipated.  We were told to pack the wound twice a day.  She assured us that it would heal over a course of 2 months if we cared for it properly.

But September came around and while the skin had sealed in the midportion, there was a nickel sized hole at the top of my buttock crack and a larger hole at the lower portion of the wound.

The surgeon told us that we had done a poor job of caring for the wound and allowed the center skin to heal over the wound.  She said that she would have to re-excise the wound.  We agreed to have her do a second surgery as once again, she was confident that things would heal after the second operation.  So, I had another operation in September of 2020.  I had a huge new wound in my buttock crack.  This time the surgeon insisted that I go to a wound clinic three times a week.  This required me to miss almost 5 hours of school a week (which I made up on my own at night) and for my parents to miss work and driving me an hour round trip to the wound clinic.

The doctors at the wound clinic were optimistic that the wound would heal in around 2 months and claimed to have successfully treated many such wounds.  But come January of 2021, the wound was slightly smaller but still wide open.  We spent the next year seeking opinions of other wound specialists and surgeons.  The surgeons were afraid to reoperate on me.  I underwent several months of hyperbaric oxygen treatments.  Come January of 2022, I was giving up hope that my life would ever be normal again.  My family and I were exhausted and demoralized.   I couldn’t believe that I was going to have to live with this wound on my backside forever.  How would I attend college, which I was supposed to start in August?  How would I date?

It wasn’t until February of 2022 that I began to look for others like myself.  I didn’t think that they existed.  But it didn’t take much time at all on the internet to discover how common stories such as mine were.  All chat rooms and posting sites pointed to just a few places and most pointed to a clinic in San Francisco specializing in treating patients just like myself.  

I sent Dr. Sternberg the information that he requested on his website and scheduled surgery in March.  Flying to San Francisco, meeting Dr. Sternberg and his staff was surrealistic as I had read so much about him before my visit.  Surgery went as planed and my wound was closed for the first time in almost 2 years.  After visiting with Dr. Sternberg and his team the day following surgery, we flew back home.  We removed the drain that was placed at the time of surgery 8 days later (it was surprisingly easy).  2 days later I began to exercise.  I felt better than I had in 2 years.

It’s a month later and my wound seems durably healed.  Dr. Sternberg told me last week that I can do anything, even ride a bike.  I am so relieved to have found Dr. Sternberg.  He did indeed give me my life back and I am forever grateful.  While it may seem crazy to have to travel for pilonidal surgery, it is worth it.  I only wish that I realized that before for first or second failed operation.

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