One Year Healed from Fistula Disease

 

October 24th 2022 is an important date in my healing journey.  It is the day I was declared healed from stage 5 complex fistula disease.  That day I was able to cross something critical off of my my healing plan.

And now today, I am celebrating one year healed from fistula disease.  This week we look into,  

• The story
• How I feel now one year healed from fistula disease
• Read the 4 part series of the development the healing of my fistula here

The Story

This story of one year healed from fistula disease starts back in 2020 when I developed an abscess as a result of a pretty bad Crohn’s disease flare.  After having emergency surgery, I was left with 4 drainage wounds to help heal the abscess wound.

Unfortunately one of these drainage wounds never healed.  This was the start of the fistula.  I now had a hole in my colon and channel through my body to the outside skin.  I first noticed leakage from the wound in September 2020.

I flew home to Canada to try and get surgery and heal the fistula.  I waited for almost 3 months to see a surgeon, and then received some bad advice.  

She told me that there were no surgery options for me.  And basically I just had to live with the fistula and constant infection leaking. I just accepted this as fact and continued to live with the leakage and fistula for over 2 years.

Then in late 2022 I started to feel a familiar pain.  Another abscess had developed, again as the result of a bad Crohn’s flare.  I tried to have surgery done in Australia where I now live.  I had been on the waiting list for months to see the specialist.  And the development of the abscess meant that I got to see him straight away.

This appointment was a critical one.  I brought my partner with me, and made sure I took notes and prepared questions beforehand. 

In that first appointment the surgeon told me something I will never forget.

“The outcome for someone in my condition, with IBD and a complex fistula is not good.” 

I would need something called flap surgery, where they placed something over the opening in my colon.  And hoped my body would take to the object and grow over it.

I was told that I would most likely need to have multiple surgeries over the next 4-5 years, as the failure rate was high.  At the end of all that I would most likely still have the fistula.  He said the ballpark success rate was around 30%.  

I told him I needed time to consider my options.  Even though he pressured me to get a seton placed that Wednesday.  I insisted that I needed time to think about it.

In desperation I took to the Internet.  Eventually I found a Facebook group created by a patient of Healing Hands Clinic.  Her story was similar to mine.  She had been failed by her doctors in her western country.  And she traveled to Pune, India and had a successful, life changing DLPL surgery with Dr. Ashwin Porwal.

I did a deep dive into the clinic.  I tried to find all the information that I could.  Including anything negative.  The clinic seemed almost too good to be true.  

It wasn’t until I spoke to 3 previous patients of Dr. Ashwin’s that I was truly convinced.  They told me things like,  

• The surgery had given them a new lease of life.  
• They were in a desperate situation, and decided to take a risk.
• All 3 of them could not recommend Healing Hands Clinic highly enough.
• One mentioned it was the best medical care they had ever received. 

Eventually myself,  Ron and my support team were convinced.  Besides what other options did I have? 

We decided to take the risk, despite some negativity from some concerned family and friends.

We traveled to Pune, India and I spent the next 11 weeks healing from complex stage 5 fistula disease.  It was a long, and painful process.  But it was a necessary sacrifice I needed to take to take back control of my life.  

 

And it worked.

 

How I Feel Now One Year Healed from Fistula Disease

To be honest there have been quite a few ups and downs over the past year.  Immediately after my DLPL fistula surgery my Crohn’s went into remission.  I know that this was largely in part to how much my overall health improved after having this constant leaking infection removed from my body.

Then 4 months later I got COVID and it put me back into a flare.  But I am grateful to say that despite that I am still 100% fistula free.

There is no leakage, no pain, and no hole at all.  The only remnants are a collection of scars.

Mentally there have also been some challenges over the past year.  

It has been difficult for me to accept that I am fully healed from fistula disease.  There has always been some part of me over the last year that is waiting for the other shoe to drop.  For something else to happen.  

There were many moments in the first 6 months that I would cry or feel overwhelmed with fear of the fistula coming back.  That I would end up in tears, almost convincing myself it had already happened.

I am aware that this is a really bad mindset to hold.  And I actively worked at it, but it took time.

I was also constantly “checking”.  I would feel the skin of my bum every time I would go to the bathroom.  I was constantly checking my scars in the mirror.  Seeing a mental health specialist really helped me with this checking behavior.

I will say that the worrying did get less and less over time.  Eventually I could go a few days without fear of fistula. 

After hearing so many times that complex fistula disease is often incurable, and highly recurrent.  I guess I began to believe it.  Even Dr. Ashwin said many times fistula disease is a tricky disease. 

Which makes my healing feel even more like a miracle.

I feel like reaching the year mark is a real milestone.  It feels like a birthday to celebrate.  It also feels like the longer I am healed, the less likely recurrence it.

I am still cautiously looking towards a completely fistula free future.  

I also feel as if curing myself from one ‘incurable’ disease has given my momentum and excitement about healing the other ‘incurable’ disease I have – Crohn’s.  It has encouraged me to keep going.  And it feels like such a big win for my overall health.  
And I know I have come so far in the last year with that as well.  I am really hoping helminthic therapy is going to play a key role in my healing.

 

This whole experience has shown me that miracles are not as uncommon as we may think.  If we pay close enough attention there are miracles happening every single day.

So today I am celebrating!  This is a huge accomplishment.  And now I want everyone to have the knowledge about DLPL surgery,  and how to live fistula free.

I have committed to helping spread the word about Healing Hands Clinic and Dr. Ashwin Porwal.  I have connected with over 20 people in the past year who were interested in his care.  

If you ever have any questions, please feel free to reach out to me.  I am happy to give my honest opinion.