Abscess and Fistula Story Part 3: Unacceptable Surgery Options

One of the worst things about IBD, is the complications that can arise as a result of a 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 three of four, so stay tuned!

Read Part One here, and Part Two here.

 

Abscess and Fistula Story Part 3: Unacceptable Surgery Options

 

I lived for more than two years with a massive infection leaking out of the hole in my bum cheek.  About 4 cm from my bum hole. 

It mostly did not cause much pain.  And although it was a bit gross, I became used to living with it.

In September 2021, I began to have a major IBD flare that would last until about April 2022.  I used a semi-elemental diet to help put me into remission. 

In May 2022, my inflammatory markers were still high.  My calprotectin levels were around 260.  But my symptoms were much better. 

This is when I started to develop pain in the flesh of my left bum cheek.  I was so worried that I immediately went to the emergency room.  I received a CAT scan straight away. 

I was crushed to hear that the fistula tract had grown.  It was now more than 15 cm long, and spread across both sides of my colon (into my left and right bum cheeks).  And there were two abscess cavities that were collecting infection.  That’s what was causing me the pain.

Receiving this news was devastating.  I knew that the fistula tract grew because I did nothing to heal it for over two years. 

About a month before this. I had visited an acupuncturist and Chinese medicine practitioner for my Crohn’s disease.  When discussing my health history, she was shocked to hear that I had green pus leaking out of my body.

She told me that I would never really be able to get into deep remission, with a hole in my colon.  It made complete logical sense.  My entire body’s immune system was focused on this hole. 

I told the acupuncturist that I had tried to have surgery in Canada to fix the fistula and hole in my colon.  But was told that there were no options available for me.

She told me that I needed to look overseas.  Specifically in India and Thailand, where medical treatment can be more advanced.  There are less government regulations, and more freedoms for doctors.

 

After the CAT scan, I had to wait about 10 days to see the colorectal surgeon in Australia.  Who would discuss my treatment options available for me.  In the meantime I would receive an MRI.

From the CAT scan results.  I learnt that most of the inflammation in my gastrointestinal tract was around this hole in my colon.

I was in agony.  Mental anguish over what I should do about the fistula.  And physical anguish with all of the pain I was experiencing.

And the pain only got worse.  I got to the point where I was taking multiple codeine’s a day (I don’t ever take any pain meds so this was a very big deal).  The pain was too much for me to handle.  And some days I would just shut down.

I couldn’t cough.  I couldn’t sit.  I couldn’t stand comfortably.  I couldn’t wear any clothes that touched my bum.  I was in agony.

While waiting for my appointment with the colorectal surgeon in Australia.  I did a ton of research.  I looked at every post and comment in all of the IBD Facebook support groups.  I learnt that treatment options for a complex fistula were not great.

Many people had setons for their fistulas.  But they often had complications with them falling out.  Or getting infection around the fistula opening.   Plus it still did not cure the fistula disease.  Only prevented it from abscessing by allowing the infection to flow freely out.

I read endless horror stories of patients from all over the world receiving multiple failed surgeries.  These surgeries seemed to almost never work.  Then once all treatment options were exhausted.  The patients were ignored by their doctor.  And left to deal with the pain and consequences of the failed surgeries on their own.

I did not want the same thing to happen to me.

With the information the acupuncturist told me I began to look overseas for options.

Eventually I found a Facebook support group.  This group was created by a patient with a similar fistula story to mine.  She had received surgical treatment in Pune India. 

It was the first time I heard about Healing Hands Clinic.

I decided that I would try to exhaust all of my options here in Australia first.  And it was finally time for my appointment with the colorectal surgeon.

I did not hold out much hope for the appointment.  And I am so grateful that my partner Ron came with me.  Not only for support. But so that he could hear the treatment options available for me straight from the doctors mouth. 

Otherwise I think it would be difficult to believe.

A colorectal surgeon specializes in all surgeries with the colon.  He would have done countless surgeries for fistula.  And was obviously knowledgeable about the topic.  He seemed like a kind, caring man who devoted his whole attention to my  appointment.

He started the conversation by saying that I seemed to be in very good spirits given how bad my MRI results were.

He explained my MRI results with a very helpful drawing. 

 Then he explained the three step treatment plan available for me.

• Get a seton to relieve the pain.  That surgery could happen within the week.  But it may take two surgeries, as finding the hole in the colon can be difficult with so much infection present.

 

• I take IBD medications including biologics to control the inflammation in my GI tract.  (I had been actively avoiding these meds for years, and was super weary about this).

 

• I get what is called a flap surgery. 

 

He explained that many IBD patients never get to the third step because they cannot get their inflammation under control.  In this case, the patient lives with the seton in place for the rest of their lives.  And never receives any surgery for their fistula.

He told me that in a ‘normal’ patient, the flap surgery has about 70% success rate.  But with someone in my case, with high levels of inflammation, and such a complex fistula.  The success rate would be a lot lower.  He ball parked around 30-40% success rate for me.

This is a direct quote from the doctor, that I wrote in my journal after the appointment:

“Realistically, you will have 4-5 surgeries over the next 5 years.  And at the end of all that, you will probably still have the fistula.”

I was shocked.  How could such an advanced country like Australia not have medical treatment for me??

I asked the colorectal surgeon about his thoughts on the clinic in India.  I showed him their website, and some research papers.

He said that he had heard about the surgery.  But he could not recommend it.  He said he knew almost nothing about it.  And heading overseas for surgery was always a risk.

He said his biggest concern was that the surgeries would have to take place in a very small area of my body.  If any doctor made a mistake, or did a failed surgery.  I would have scar tissue, and other complications, that I would have to deal with for the rest of my life.  Overall he said it was an unnecessary risk.

I kept my opinion to myself. But thought, aren’t the multiple invasive surgery options you just offered to me high risk?? 

I spent the next few days obsessively researching the clinic.  I read every scientific article the clinic had posted.  I watched many of their informative Youtube videos.  And read all the Facebook posts, and comments.  From people who had received surgery for fistulas at Healing Hands Clinic.

I learnt that it was a DLPL  laser surgery.  And the clinic used to use a FILAC laser.  But had improved upon the technology when the success rates of FILAC were not very high.

I spoke to two previous patients on the phone.  One who had had the treatment about four years ago, and one just six months ago.

Both raved about the medical care they received.  They had both had multiple failed surgeries in their home countries.  They were both in so much pain it affected their ability to work and live a normal life.  One of the women had been ghosted by her doctor when they could no longer provide any treatment options for her.

One of these patients said that the surgery gave her a new lease on life.  That’s what I felt I needed.

Ron listened in to these conversations, and was soon convinced.  It was also obvious to him that I was in a pretty desperate situation.

I called the Healing Hands Clinic, in Pune India.  And asked about appointment availability and cost.

I was told that I would have an appointment with Dr. Ashwin Porwal, the creator of the surgery, straight away.  And my surgery would happen as soon as I was ready.

The costs were then broken down for me for a grade 5, complex fistula:

All in USD:

 

$8000 for the surgery

 

$1500 for any follow up surgeries (usually at least one is needed)

 

$6 for each follow up appointment, usually two per week.

 

I was told that to receive the proper medical care needed for the complexity of my fistula.  I would need to stay in Pune, India for 8-10 weeks for recovery and aftercare. 

 

I made a budget for how much this would all cost me.  I broke it down as follows:

 

All in AUD:

 

$11500 for the DLPL surgery

 

$2000 for follow up surgery

 

$3000 for two plane tickets from Cairns to Mumbai

 

$2500 for Air BNBs for 8 weeks in Pune

 

$3200 for spending while there ($200×8 weeks x2 people)

 

For a total of $22,200 AUD.  Which is a huge amount of money.  At that point my life savings totalled around $11,000.  I knew that I was going to have to ask my family for money.

I sent out an email, and called a few family members explaining my desperate situation.

I received mixed responses.  A few were adamantly against me going to India for surgery.  They were concerned I’d have my kidneys removed, and sold on the black market.  Or it was all just somehow a hoax to trick me and take my money.

A few were very supportive, and thought I was brave for looking for alternative options.

In the end Ron and I managed to gather the money together.

Then there were some unfortunate hold ups on my visa.  I ended up getting a one year tourist visa, instead of a two month medical visa.

 

And then finally the next step could occur.  We were going to fly to India so that I could have DLPL surgery on my complex, grade 5 fistula.