*obligatory disclaimer* The TROPIS/PERFACT procedure is only available in India, and is not approved for use elsewhere. Choosing to travel for this procedure is done so at one’s own risk. What works for one person, may not for another – we are all different!
A factual recount of my trip to India for fistula treatment.
On June the 19th we flew to India to visit the Garg Fistula Research Institutein Chandigarh. I was ready. I had tried a surgeon in Australia for fistula treatment (three operations later), and the pain I had returned with in May, propelled me onto the India path.
In August 2016, for the first time in all my years of googling, I came across the Garg Fistula Research Institute in India.
Their website didn’t blow me away at first glance, but as I read more about the surgeon’s credentials, all the research papers he had written and the awards he had received, I became more excited. I made contact with the clinic via email and shortly after, we began sending each other WhatsApp messages. I asked lots of questions about what the surgery was, how long I’d have to be there, where to stay, climate and more, and they sent back suggestions and also links to various videos and research articles that Dr Garg had written.
They also sent me the name and number of someone in New Zealand who had recently been (with their permission of course), so we organised a time to talk. The man was Indian, living in Auckland, and had been over with his wife after struggling with a fistula for 2 years. He hadn’t tried any surgery yet, and Chandigarh was only a few hours from the town where his parents still lived.
I asked him hundreds of questions…
…both about being in the city and also about the procedure and the surgeon. He couldn’t speak highly enough of the surgeon and his team, and of how much they cared. I felt heartened to hear such an amazing review, but I still felt daunted about going somewhere where my tummy could get upset from the food, and also the 17-hour plane trip when a 2-hour car ride was almost too much.
However, I organised a time to talk to the surgeon on WhatsApp, and got to ask him all the questions about why and how, and also got a feeling about him. He had a lot of time for me on the phone and answered all my questions in depth. I could tell that he really knew his stuff and was passionate about always learning more. At this stage, I hadn’t had any other surgeries. He told me that so often he had people come to him as a last resort. They had tried many different surgeries and often those had made the fistula worse.
I felt excited by the idea that there might be someone out there who could help me with my fistula treatment…
…but I also felt scared about going to India. Harlan wouldn’t be able to come with me because it was the busy time in the honey season. This meant my mum would join me. I would never have gone alone, because you must have a support person to learn the dressing changes that must be carried out once you get home, otherwise you need to stay there for the 2-3 months it takes to heal.
A month or so later my tummy struggled with a ‘flare up’ and it took a while to calm it down. Obviously in that time there was no way I could go anywhere, and surgery wouldn’t have been an option while my gut was inflamed and angry.
During that time, I came across a different fistula treatment option closer to home, in Australia, and began communicating with that surgeon.
Long story short, we discussed my case and decided I would come over at the beginning of January, with the hope of him performing a VAAFT. And so just after New Year, with my tummy back to normal, I went to Brisbane with my mum. During surgery, because there was too much tissue degeneration in the area he was only able to clean out the tract and place a seton. I was in a lot of pain for weeks afterwards, but as the tissue settled, the seton made it easier for a while. Then the inflammation started up again, so I planned my return trip in the hope that the second surgery would be able to bring about a complete closure.
So off I went in April with my mum again. The surgeon decided to use a collagen plug. Within a couple of days after this operation, it became obvious that the fistula treatment had failed, and 5 days later I returned to hospital for more surgery – this time he removed the disintegrating plug and placed another seton.
The pain this time was even worse and I arrived home in NZ three weeks later in more pain than when I had left. Mentally and physically it was a rough time, and even though at first I said I would give it a month of so to settle down, my mind began drifting back to India; my ‘last resort’. I could feel my Inner Wisdom gently speaking to me. The more it went there, the more I felt in myself that I just had to do it, and do it soon. The time was right. If I waited until July, Harlan wouldn’t have been able to come with me, and I knew that I really wanted to have him with me for this part of my healing journey.
I spoke to the surgeon in India again.
Dr Garg reminded me of his three main aims with patients:
• Never create any danger to the sphincter muscle
• Minimise chance of recurrence
• Minimal pain after surgery – able to walk and carry on normally within days (big call after my recent experience in Australia)
The clinic also put me in touch with a couple from Northland, New Zealand, who had recently been over. He had been struggling with a fistula for a few years, with a number of painful seton placements, and it turns out it was a simple fistula treatment that Dr Garg approached by laying it open. It was now all healed and he had no more pain. The couple not only explained the technical details, but also gave me the western perspective of the clinic, the hospital and the city. His wife told me that, during consultation, you are not insulated and private as you would expect to be here in NZ, but that the care was the best. She also told me that even though it may not look as professional as we expect here when you go into the clinic/hospital, I should know that the staff were the best and most expert she had ever come across.
After a week or so, and talking with Harlan, we decided to go.
I was now more nervous about the 40 degrees we would be going into (in the peak of summer) than the food giving me Delhi Belly. I felt so much stronger in my body from all the different levels of nourishment I had been giving it, so that didn’t really concern me as much. Two friends also decided that they would come on a winter adventure with us. So we booked tickets and a few weeks later we were on the plane to New Delhi via China.
The flight was only bearable for my bum because there were spare seats that Harlan went to, and I could have two to myself to curl up and sleep most of the way. By this stage I was ready to do anything with the hope that the end of bottom pain might be in sight…
We arrived in New Delhi, slightly delirious from lack of sleep, and had our last 1 ½ hour internal flight up to Chandigarh. I felt so excited being in India and seeing a landscape so different from anything I had ever seen. There were SO many buildings as we taxied down the runway, and so much colour everywhere.
Chandigarh, a small city of only a million people, is reputed to be India’s cleanest city.
We landed around 5:30 in the evening, so the heat was manageable and walked into a rather empty airport. We were the only Westerners in sight, and as we walked out of the doors with our luggage, Dr. Garg’s driver, Shankar, came over with his sign ‘Kali Bell’.
He led us to his small Honda (he had been told that there were only two of us), and we all squeezed in, laughing about the miscommunication. During our time in India we learnt that miscommunication just happens, regularly, but despite that, everything runs in its own way! Luckily, we hadn’t brought much luggage because we knew we could buy what we needed here. Shankar pulled out, tooting as he went and we were on our way to the hotel via the Garg Fistula Research Centre for my first consultation. I could write pages and pages just on our first drive, but since this is more about the medical side of things, I’ll keep it brief.
Basically, road rules aren’t what you expect in the West. We crossed lanes and other cars were expected to slow down to let us in, there were 5 vehicles wide across 2-3 lanes, there were 5 people up on scooters, jam-packed auto-rickshaws mingled in between cars, cars stopping for dogs to cross, and the means of communication was tooting. It was absolutely amazing and I was very glad that we had a driver and weren’t trying to navigate this ourselves.
We arrived at the Garg Fistula Research Institute, attached to Dr Garg’s house, and went in to meet him and his team.
Even though I had sent them emails before, I still ran over my history and everything that they might need to know regarding the fistula surgery and everything related to it. He asked about my Crohn’s history, and because I wasn’t on any medication and didn’t have any symptoms he said that it wouldn’t affect his job.
He gave us so much time and answered all our questions. Already I was getting the feeling that this was a man I could trust, who was passionate about his work, and who really knew what he was talking about. All he treats is fistulas, fissures and piles, and he travels around the world talking to other surgeons about his research.
The following morning I was booked in for an MRI at 8.
Shankar picked Harlan and I up at the hotel. When we reached the MRI clinic it looked like a little shopfront, and we were very glad that we had Shankar with us to speak Hindi to the people at the front-desk. It was quite different to any other MRI I’ve had, but I was relaxed and I’m sure the machine was slightly wider so it felt less cramped in there.
Once the images were ready we took the CD off to the clinic for Dr. Garg to check and give us the verdict. He is concerned that most surgeons and radiologists seem to have a hard time properly reading MRIs in relation to the anal area, and so many times he has people come to him as a ‘last resort’ from top surgeons around the world where fairly simple and obvious things have been missed. I didn’t realise I would be ‘one of those’ people.
He began scrolling through the images on his computer. We could see where the seton was and all the inflammation around that area. He kept scrolling higher through the slides and talked us through, in detail, how there was actually another, previously undiscovered, abscess higher up. He explained to us that there is an internal and external sphincter muscle, with an intersphincteric space where abscesses can often form with a fistula, and mine had horse-shoed around in this area. This meant that my case was complex, and my heart sank.
I had so hoped it would be a simple fix.
Being my first day in India I suddenly wondered if I would have to stay longer than three weeks, healing away from the comfort of home. Long story short, he told us what procedures he was going to carry out on the various areas and said that with the higher complex fistula/abscess it would reduce the success rate slightly to the 80% range , but he was still confident that it wouldn’t take longer than 40 minutes to sort it out in hospital.
That afternoon I squeezed in some market exploration with all of us, knowing that in the next few days I would be too sore to go around in the car site-seeing. I was quite nervous about the following day – my second day in India, driving to a new town, being operated on in a hospital in India, having to spend the night, and being so far from home with what was happening. I was so relieved and grateful that Harlan was with me and would be able to stay the night in the hospital alongside me.
The next morning Shankar picked us up bright and early and we had an entertaining drive to the Indus International Hospital in Derra Basi. He dropped us, wishing me well, and again, being the only Westerners, we had to use a combination of sign language and help from some very kind people who would call in others who knew some English. Needless to say, we were allowed to skip parts of the forms.
We were led to our room on the 3rd floor, overlooking dry fields, where the cows were grazing, and waited to be called in for surgery. I had begun fasting that morning and Dr Garg also told me that I couldn’t eat for 5 days after the surgery – not having a bowel motion would greatly reduce the pain. That in itself was rather daunting, especially when everyone was so excited to be surrounded by delicious Indian food!
I was in my green gown, net hat on and the nurses came to get me with a roller bed and off we went. It was quite surreal really, waving Harlan goodbye and disappearing with people I couldn’t communicate with into the depths of this hospital. Even though it’s an international hospital it is still very different from what we are used to here in a first world country, but I had been mentally prepared and had a deep sense of underlying trust in the whole process.
In a nutshell, I received a spinal block, which meant that although I couldn’t feel the surgery I felt the pressure and discomfort of being prodded and poked with my legs up in stirrups. Luckily Dr Garg had given me the green light for taking in my head phones (with guided imagery and meditation music on), which really helped. Plus a lovely, young caring anaesthetist who told me a little bit about his life. After the procedure, I was wheeled into recovery and a few minutes later began shivering. At first I let my body go with it, because I believe that body movement after trauma can help shift it through your system faster (like with dogs shaking). However it became stronger and stronger. I tried to consciously stop it every time a nurse came in because I was desperate to get back to the room to see Harlan and I didn’t want anything holding up the process.
Eventually I was taken back to our room where I was overjoyed to see Harlan.
He was very concerned about my shaking and called for our Kashmiri doctor. She checked my vitals and covered me with lots of blankets because I had gotten cold in the theatre. With rescue remedy, lots of blankets, and Harlan by my side, I eventually calmed down and was able to doze. I was not allowed to move for the next 6 hours, and it was a long drawn out, uncomfortable time. I made it of course, and then I also made it through the night on minimal pain killers.
The next morning, I had to walk about 500m – Dr Garg’s orders – and so off we went, me holding onto Harlan’s arm in my faded green gown, limping slowly next to him. We found a way to get out of the building and did laps up and down the ramps in the steamy hot morning air. I wasn’t as sore as I had expected!
Near mid-day Shankar picked us up and took us back to the clinic so that they could look at the wound and begin the dressing change process that was so vital to healing.
The procedure was as follows:
• the fistula on the outside (where the seton was) was laid open because it only touched a small part of the sphincter
• another little tract was cauterised at the opening (PERFACT procedure) – internally
• on the horse shoe abscess, he performed a TROPIS procedure by creating a cross opening, draining it, and cauterising any openings (internally)
• the ‘dressing procedure’ for my particular case was someone making sure that these wounds heal from the bottom up/inside out and don’t close prematurely, leading to the possibility of another fistula/abscess.
For the next three weeks in India we had to go morning and evening to the clinic to have the dressing changed. The first few days Harlan just watched while they explained what they were doing, and then he had to start practicing.
Dr Garg believes that there are two very important reasons why his simple procedures have such a high success rate:
a) he knows how to properly diagnose exactly what’s going on (reading MRIs) and then has a range of procedures to choose the most suitable from, and
b) he says that aftercare is at least 50% of the successful healing.
Where with other surgeries you are sent home, mostly to fend for yourself with maybe a couple of weekly check-ups, with Dr Garg you see him and his expert team twice a day for the duration of your stay in India.
If I hadn’t had Harlan with me to learn the dressing procedure, or if it had taken him longer to gain confidence, we would have had to extend our trip. Luckily for us all he picked it up quickly and confidently, and within the last week Dr Garg was happy for us to leave on our planned date. He is reluctant to let his patients go unless he is confident that your support person will carry out the dressing changes as he and his team would, for the duration of the healing process.
For the first time I felt that I was really able to trust and hand over the whole process to a true expert.
During the surgery, he took two tissue samples for a PCR tuberculosis (TB) test. He told me that it is routine for him to test for this, because if it goes undetected in the tissue it can cause a recurrence of an abscess or fistula because the TB cells multiply so slowly. About 5 days after the surgery the results came back positive. Since I was born and brought up on a farm in South Africa, where a lot of the workmen and their families had active TB, it wasn’t the biggest surprise.
The treatment for TB is a 6 month course of a combination of anti-biotics.
He told us that it was very lucky that the test had showed up positive, because often it can hide in an area of the body, and unless a PCR test is done on that particular tissue you can show up as negative. The things you never knew you never knew! I went on quite a Google mission after that to see if it might tie in with any of the other health-related issues that I’d experienced in my life!
Just to backtrack, for the last 5 years, since August 2012, I hadn’t been able to sit on my bum properly because of the pain. Whenever I needed to maintain a sitting position I would either sit with my knees bent and calves underneath me or I would sit twisted and sideways so that there was no pressure on the right-hand side of my bum.
The second day after surgery when I came into Dr Garg’s office and went to kneel on the chair he asked me why I wasn’t sitting.
Because it’s too sore and there is a gaping wound that I don’t want to sit on, I replied, wondering how he could even ask such a silly question.
You need to sit, he replied. Go on, try it.
I gingerly lowered myself very slowly onto the seat and allowed a little bit of weight to bear down. It wasn’t as painful as I had expected, but I still held some of my weight off.
Your new assignment, he said to me, is to sit as often as you can. It will give you that sense of normality that you haven’t had, and it will also allow you to feel any areas that may not be healing as they’re supposed to and you can report back.
Being dropped in Delhi for our last night in India. Shankar (middle) made our trip! He was the best driver EVER and became a great friend!
And so I began sitting normally on our drive to and from the clinic. At first I couldn’t believe that with such a huge wound I was able to do this when I hadn’t been able to sit for the last five years. However, it just became easier and easier until, on our last day we drove for 5 hours, from Chandigarh to New Delhi. Half way through the trip it started to get uncomfortable, but I could handle it, whereas before I arrived I couldn’t even have even sat for 10 minutes like that!
These were the small victories.
The big victories were that the wounds, both inside and outside began to noticeably heal before we left, and now, just over 3 months after my surgery, both the internal and external wounds are about 90% healed! Harlan still attends to them twice a day and will do so until everything is 100% healed. We now completely and deeply understand why the aftercare is so vital to wholesome healing after a fistula surgery. The other great victory is that I also have more energy because my body isn’t constantly fighting infection either!
My other offers regarding fistula surgery:
So, just to summarise, the procedure I was offered by the expert here in New Zealand, was to place a seton for about 6 months to a year, to allow inflammation to reduce and then possibly look at the option of an advancement flap. Inflammation would never have fully reduced because of the undetected abscess higher up, and even if it had and 6 months later the lower tract had been healed, I still would have been in a lot of pain from the hidden abscess. When this found another way to exit my body as another fistula, the explanation would probably have been that I was just prone to them and they were ‘unfixable’.
In Australia, even If the VAAFT procedure or the collagen plug had sealed the lower tract, exactly the same thing would have happened. I still would have been in pain, and weeks or months down the line, a new tract would have formed to allow the abscess to drain and I would have believed that I was incurable.
I had also thought of going to India for a kshara sutra treatment (before I found the Garg Fistula Research Centre), and had I done that, it would have at first seemed like a success and just like all the other options it wouldn’t have stuck.
Luckily for me I didn’t take the New Zealand option…
…and the Australian option didn’t work, otherwise it might have taken me another year to get to India where I was able to find such amazing, expert, wholesome, caring treatment. I will be forever grateful to India, Dr Garg and his decision to keep learning more and more about treating fistulas, his amazing team, and all the growth and stretching I have done to get to the point where I never gave up and was ready to open myself up to fully trusting, even when it sounded like a ‘mad idea’ to others.
So many things led me to this place in my journey – EFT, learning to love myself more deeply and whole-heartedly (and all that encompasses), the incredible love and support from those human angels around me, and learning to surrender, let go and trust.
If you have, or know of anyone with a fistula please share this knowledge with them because it could change their lives! And even if it helps just one person to end the pain and struggle that they are experiencing as a result, that would be AMAZING!
A note from Finally Fistula Free: This site is for sharing stories of hope, and is NOT to be used for medical advice, and it should NOT be used to replace medical advice. You are responsible for your own choices. The individuals sharing their stories here are NOT medical professionals, they are patients sharing their own experiences, and their own opinions.
It takes courage to share, thank you to all who share their story here with us!
Much love ❤