Read Part 1 first.
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.
He was always kind, caring and the amount of things that we learnt while there were phenomenal (I could write a booklet just on that). My other options up until then had pretty much been – live with a seton, go onto heavy immune-suppressant drugs, and keep trying a different surgery every year or so.
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.
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!