Fistula Treatment @ the Research Institute: Part 1

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 Institute in 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.

Rowan, Louis, Harlan and me getting ready to fly!

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.

Part 2 here

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