Abscess and Fistula Story – Part 2

 

One of the worst things about IBD, is the complications that can arise as a result of the disease.  When you have chronic inflammation in your gut.  Strictures, abscess, and fistulas may occur.

This is my story of dealing with, and healing three abscesses, and a complex, grade 5 fistula.  This is part two of four, so stay tuned!

To read part one of this story, click here

Part 2: the Fistula

After having received emergency medical treatment for an abscess .  I thought that my abscess journey was over.  Little did I know that this was just the beginning of a two plus year long journey.

It took me about six weeks to recover from the abscess surgery.  After leaving Nuku Hiva, where I had received the medical treatment.  Ron and I continued sailing around the remote islands of French Polynesia. 

We happened to be visiting an uninhabited atoll called Tahanea.  We spent hours exploring the spectacular underwater world that the atoll had to offer.

One day after a swim, I felt liquid drip down my leg.  I assumed that it was still ocean water dripping off my body.  But a few hours later, I felt another drip. 

This time I had a look at the liquid.  I brushed it off with my finger, and saw that it had a slight green tinge to it.  I smelt it.  It smelled slightly sweet, and foul.  I had no idea where this liquid came from.

After using the bathroom.  I realized that my underwear had a collection of this same, greenish liquid in it.  I discovered that one of my abscess surgery wounds was leaking.

After the surgery to remove the abscess.  I had four drainage holes put in my body to drain out the infection.  It seemed that one of these wounds was now leaking.

I literally had no idea what this meant.  And we had no internet access so I could look it up.  We rushed our itinerary, and sailed to another nearby island that had good internet, and a small village.

I did not learn much from the internet about what was happening to my body.  There was a walk-in clinic on the island.  With a single, full time nurse working there.  She examined my surgery wounds, and listened to my medical history.

She told me that she could not be sure what was happening.  But that green, smelly liquid almost always meant infection.

She told me I would have to travel to Tahiti straight away to have a doctor look at the wound.  She gave me a round of antibiotics.

The doctor in Tahiti told me a similar story.  He said he wasn’t 100% sure what was happening, but gave me another round of antibiotics.

I took antibiotics for two weeks and nothing improved.  In fact the wound started to leak more liquid than before. 

I was now beginning to feel distressed.  I knew it was somehow linked to my abscess.  And using the internet I learnt about fistulas for the first time.

After many disappointing hospital visits.  A doctor told that I probably had a fistula as a result of the abscess.  The medical staff told me that I would need to have a CAT scan or MRI to confirm the diagnosis.

Then to treat the fistula, I was told that I would have to have surgery.  A fistulotomy.  It was going to be expensive for me to get the surgery done in Tahiti.

Ron and I discussed what we should do next.  We still had to sail across half of the Pacific Ocean to Australia.  We were both pretty worried about how badly I had suffered during our last Pacific Crossing.  And we were well aware of how close to death I may have come.

We decided that due to this new development, I should not sail from Tahiti to Australia.  Due to COVID, almost all international borders were closed.  If we had another medical emergency at sea.  It would be nearly impossible to stop at any of the remote locations for help.

It was a very difficult decision to make.  But six days before our planned departure, we decided that I would fly home to Canada to have surgery.  And Ron would complete the remaining 3500NM single handed.

I traveled to Canada with a heavy heart to have the surgery.  I have always tried to not let IBD impact my life..  This was a major change in plans, and a direct result of me having IBD.  I was quite heart broken.  And feeling a bit sorry for myself.

I had to wait weeks to see a gastroenterologist in Canada.  And when I finally did meet him, we did not see eye to eye on how to manage IBD. 

I then waited even more weeks to see the surgeon.  When I did have my surgery appointment, it was disappointingly brief.

The surgeon looked at my CAT scan results.  She told me that the fistula was too high inside my body for them to operate.  I was told that there were no options to heal the fistula available.  And that I would have to learn to live with it.

I was offered a seton.  She told me that it would not cure the fistula, but hold it open prevent it from re-abscessing.  I had heard many stories online of IBD patients’ horrible complications from setons. 

And I did not want to artificially hold open the fistula.  I still held out hope that somehow the fistula would heal on its own.

I was not interested in pursuing a surgical option that would not cure me.  The surgeon told me that there are no other options available for treating my type of fistula.  And that I would have to learn to live with it.

Overall the appointment was severely disappointing.  I had left my partner, and boat to travel to Canada for surgery.  And now I was told there were no options for me.  I was crushed.  I felt like I had wasted so much time, money, and energy on absolutely nothing.

I could not find any information online about what I should do.  I only read about fistulotomies, and setons for IBD fistulas.  And neither would heal my fistula.

So I decided (or was forced) to just live with it.

At this point the wound was leaking sticky, green, smelly liquid constantly.  My mom sewed me some reusable cotton pads.  I would stick them in between my butt crack to absorb the liquid, and prevent my underwear from being soiled.

I hated having the liquid coming out.  But it also was not too bad.  I could live with it.  It did not cause me any pain.  And my partner was not grossed out by it.  So I just learnt to live it.

I lived with this infection dripping out of my body for more than two years.  If I had known then, what I know now.  I would have made completely different decisions.  At this point, I did not realize how much pain, and drama this fistula would cause me.