My story begins in 2014 with an abscess in the buttocks. Painful to touch, swollen, making it difficult to sit down, and slowly growing. I went to the emergency room where they diagnosed the problem and performed an operation to drain the abscess. It wasn’t pleasant, but the recovery was easy and I soon returned to normal functioning.
At the beginning of 2017, the abscess re-appeared in exactly the same location. After a Trans-Rectal Ultrasound Scan (TRUS), a trans-sphincteric fistula was immediately diagnosed. For those who do not know what a fistula is, consider yourself lucky. If you still want to know, you can read more here. Simply put, a fistula is a tract created inside the body where it should not be. In the case of an anal fistula, this tract begins at an internal opening in the anal canal and exits toward the external skin in the buttocks, where there is usually an external opening. Because of the nature of the area and the bacteria, the tract becomes infected and often causes abscesses. Sometimes when an abscess forms, the infection looks for a way to “get out” and thus creates the fistula canal. Abscesses and fistulas are like a chicken and an egg, and it is hard to know which preceded which, but they often appear together, like Dr. Evil and Mini-Me in the Austin Powers movies.
As soon as I received the diagnosis, I quickly consulted an expert professor who is considered one of the best surgeons in Israel in the field of colorectal diseases. He explained that there are basically two main types of fistulas: those that cross the sphincter muscles and those that are lower and simpler and do not involve any part of the muscles. For those who want to read in more detail about the types of fistulas and their relationship to the muscles, take a look here. The difference between the two types of fistulas is very significant and the way they are treated is fundamentally different. For fistulas that do not involve the muscles, there is a surgical solution called fistulotomy, which has a high success rate, during which the fistula tract is cut and left open until the body closes the area by itself and the tract disappears. For a fistula that involves muscles or a large part of the muscles, this solution is not feasible, as the chances of injury to the sphincter muscles are high. You must understand the meaning of this: incontinence. I don’t have to explain it, right? So, what do we do for the fistulas that cross the muscles? Oh, good question. There are a variety of other surgical solutions for this condition called “sphincter preserving surgeries”, among which I will mention the common ones – Advancement FLAP, LIFT, Cutting Seton, Fibrin Glue, Collagen Plug, Laser (FILAC). The professor was honest and told me that when there are many solutions to a medical problem, it means that no solution is really good. And this is exactly the case with fistulas involving the sphincter. All of these solutions are not good enough and suffer from low (or controversial) success rates / high risk of complications / long recovery / all of the foregoing (this is my statement from the knowledge I have today, not the professor’s). At this stage, the doctor did not know the amount of muscle involved in the fistula, and even an MRI scan did not gain any clear information regarding this question. The professor recommended a surgery under general anesthesia that would include drainage of the abscess and examination of the fistula tract in order to determine whether a fistulotomy was feasible (if none or only little sphincter muscle was involved). If the answer was positive, he would perform a fistulotomy surgery. If the answer was negative, he would insert a Seton thread that will serve as a drain and leave the fistula tract dry and drained (“loose Seton”) as a preparation for another surgery at a later stage.
In hindsight, it seems strange to me that if my initial TRUS report said “trans-sphincteric fistula”, which means that my fistula crosses both of the sphincter muscles, the doctor thought there was even a chance for a fistulotomy. Anyway, I asked the doctor what the recovery time after the surgery would be, and what were the known risks. He said that on average, it takes about two weeks for recovery until returning to normal function, and that there are no known risks apart from the “standard” risks of general anesthesia. Since I knew that in any event I would have to undergo surgery under general anesthesia (to at least drain the abscess), and since the recovery time was expected to be short, in light of the doctor’s recommendation to treat the fistula to prevent recurrence of the abscess in the future, I decided to undergo surgery.
Surgery #1 – April 2017
I coordinated with the professor a private surgery in a private hospital, in which he would operate on me according to what we had agreed. The surgery was performed on 17 April 2017, went well (under full anesthesia) and the same night I was dismissed home. In a conversation I had with the professor after waking up from the anesthesia, he said that in his examination he saw that the amount of muscle involved in the fistula was substantial and that a fistulotomy could not be performed without serious risk of sphincter damage. Therefore, during surgery he only drained the abscess and inserted a Seton thread for continued drainage of the tract. He also noted that the shape of my fistula included a kind of a “knee” in the middle, which was difficult to pass with the probe that inserted the thread, but eventually he managed to get through the whole tract. After surgery, there was a waiting period of about 3 months for the fistula to continue to drain and clear up so that the area would be ready for a “sphincter preserving” surgery, in the method I prefer.
Two days after surgery, my fever began to go up. Under the guidance of the surgeon, I went to the emergency room at the closest public hospital to be examined. I had a chest x-ray to verify it was not due to the effect of the full anesthesia but everything was OK. I was discharged home with a prescription for antibiotics. The fever did indeed drop after starting the antibiotics, but I also began to suffer from pain in the perianal area. About two weeks later, when the effect of the antibiotics dissipated, the fever returned, along with chills, a rapid heart rate, and pain. In medical terms, it is called sepsis. At this point, I started realizing the mess I was in. Still, such a serious complication was not really expected. I had an internal infection that ran rampant in my body, and for three months I was in and out of the hospital because of the infection. At every hospitalization in the surgical unit, I received very strong intravenous antibiotics, and when I got home, I also was given strong antibiotic tablets. I suffered from diarrhea, loss of appetite, nausea, and a host of other side effects from the antibiotics. I lost a lot of weight, suffered from unimaginable pain in the anal area, could hardly walk, and generally felt like I was half dead. Remember that the surgeon told me it was an operation without known risks and with a recovery of about two weeks…. Yeah, right!
During this period, I was treated by a lovely colorectal surgeon who watched me closely at all the hospitalizations, and at the same time, the surgeon who operated on me privately was still in the loop and advised me and the CRS at the public hospital. During one of the hospitalizations the Seton thread was removed since there was a suspicion that maybe the thread itself was causing an infection. However, this did not help and the infection and sepsis remained. Both doctors told me that the only solution to my condition was a repeated surgery for better drainage of the fistula. I did not understand at all how they were proposing a repeated surgery, since this same surgery got me into this horrible condition in the first place. It seemed insane to me. I asked over and over what was their explanation for the fact that I had entered this surgery as a rather healthy person (with pain caused by an abscess, but still a functioning person feeling well generally) and ended up as a wreck. I asked over and over what their explanation was to the fact that my postoperative condition was so much worse than my preoperative condition, despite a non-drained fistula that was definitely infected (abscess). Doesn’t it make sense to assume that something went wrong during the surgery? I begged them to at least think about it and check in this direction. I even intercepted poor interns in the corridors of the unit and asked them to think about my case and any possible explanations.
The two doctors were nice and kind and always answered me patiently. But in general, both doctors’ answers were like “nothing to do, that’s how it is when there is a fistula, a fistula causes infection, you just have a drainage problem.” They admitted that they had no logical explanation for this drastic deterioration, but both of them independently explained to me that this is the way it is in surgery. There are not always clear answers. In surgery, they claim, a hundred times 2 + 2 equals 4, and in the one hundred and first time 2 + 2 equals 5. Why? That is just the way it is. And this is not my interpretation of what they said, but what they literally told me, over and over. The cute interns from the corridors politely answered me that in medicine, when you look for far-fetched explanations you find nothing, because you will almost always find out that the standard explanation is correct. In other words, searching under a flashlight is recommended when it comes to a medical problem. And under the flashlight in my case was a fistula that, according to the clinical signs, was not properly drained.
This was certainly one of the most difficult periods of my life. Unbelievable physical and mental suffering. I was suffering in every way imaginable. I was not functioning at all, I had side effects from the antibiotics, I was hospitalized again and again because of the infection, I did not see my children most of the time, between one cycle of sepsis to the next cycle I ran to meet more doctors, more examinations, more opinions. Unstoppable stress, desperate thoughts, a strong inner feeling that something was wrong but no one understood what it could be. Although no doctor said anything negative and always treated me respectfully, I ended up feeling a bit like a mad woman who was haunted by strange thoughts and refused to accept reality. The only source of light during this period was my charming family, who helped and supported me every day and every hour, and did not leave me for a moment. My dear husband, my mother, my sister and her beloved husband kept guard around my bed all the time, both at home and at the hospital. I was driving them nuts with exhausting discussions about the fistula all day (including detailed graphic diagrams, what saints they are!).
About two and a half months later a second MRI was performed. In the scan results, it was clear that a new small “branch” had emerged from the original fistula. In other words, a split was created in the tract.
I thought that finally there was a hint of a problem that caused the raging infection. But the surgeon answered my question with “we cannot tell” if this is the case, and none of the doctors showed any interest in this finding. Finally, after more consultations with a variety of doctors, more invasive tests, more fear of the results of another surgery in light of the miserable results of the previous surgery, and especially more fear of what would happen if the repeated surgery did not stop the infection, I reluctantly agreed to have a repeated surgery. I was not comfortable with this decision, but I had no other choice. Living forever with an infection inside my body was not an option.
Surgery #2 – July 2017
In July of that year, the CRS who treated me in the public hospital performed the second drainage surgery, in which he also planned to insert a Seton thread for better drainage. The surgery was performed under spinal anesthesia (not general anesthesia). Just before entering the operating room, I was tensed and talked to the CRS while I was on the bed being taken to the OR. I asked him to examine the area carefully and see if he saw any problem or damage from the previous surgery or something that could explain the source of the severe infection. I especially reminded him about the small branch that split from my fistula tract, and asked him not to enter this branch mistakenly. My husband and my dear sister who were by my bed at that moment gently joked about how I was giving instructions to my surgeon. We all laughed and then the surgery started. It was quick and successful. The surgeon explained that he did not see anything special during the surgery, and he inserted a new Seton thread into the fistula (this time from a different material, in case I was sensitive to the previous thread material). After a few days I was released to my home with antibiotics and great hope.
Within a few weeks, even after the antibiotics effect had ended, I realized that the infection had passed. There were no sepsis symptoms, no fever, no chills and no accelerated heart rate. I felt better and better and my recovery seemed promising. The second surgery was a great success, and I felt I was coming back to life. About a month later I managed to get back to work. I was so happy about the turn for the better, and I thought to myself that the doctors were absolutely right and I was a bit neurotic. All in all, there was a problem with the drainage of the fistula, and now it has been solved. The fact is that the infection had completely disappeared. I did not care if my intuition was wrong, as long as my health returned and I could return to my family and go on with my life. I even bought a souvenir cup for my surgeon, where a lot of mathematical equations appeared and the famous equation 2 + 2 = 5 appeared in the foreground.
Since then, I had not been hospitalized for medical treatment, and I was very happy not to see the surgical unit again. I would come to the surgeon’s office for a checkup once a month. I had a little discharge along the way, a little pain and a bit of bleeding, but every time the doctor reassured me that it was perfectly normal after surgery and it would take several months for the fistula tract to clear and dry completely. And so I had a few months of relative peace and quiet. I still had a thread stuck in my bottom, let’s not forget. But compared to what I went through, it seemed like a piece of cake. After this nightmare, I was quite ready to live with a thread in my bottom all my life, if that’s what it would take.
Rude Awakening
After six months of routine checkups in which I complained about pain, continuous discharge and bleeding, I began to realize that something was still very wrong. All the symptoms, including the pain and the bleeding, were only increasing over time rather than decreasing. The incision in the outer skin had not yet closed, and soft tissue was “pushed” out of it, so that the incision was not even close to scarring. And all that time I felt a kind of solid inner lump in the area that could be easily felt from the outside. The surgeon recommended waiting and giving the place more time for recovery, and estimated that the lump I felt was internal scar tissue. Despite his opinion, I felt that I was not supposed to be in this condition six months after surgery, and that my recovery was abnormal. I went back and approached a few other specialists for consultations and was sent for more TRUS and MRI tests. A few more weeks of stress & anxiety had passed, and I found myself running from one doctor to another in order to decipher the full picture. There were weeks where the pain was aggravated and interfered with daily functioning at home and at work. At the end of this inquiry process there were two certain facts:
1 – My fistula became very complex, with two tracts instead of the one I started with. In addition to the single tract, a very long new extra-sphincteric tract was created, with an internal opening slightly above the anal canal in the lower part of the rectum. How did this fiasco happen, you ask? Simple: remember the part of the story in which, before entering the surgery, I asked my surgeon not to accidentally enter into the split branch? Well, this is exactly where he entered the probe in the surgery and created a new artificial tract into which he inserted the Seton thread. Yes, yes, read this sentence once again to figure out what happened. Prior to this surgery, the fistula included a small branch. During this surgery the small branch became a very new fistula tract. Actually, looking back I do not really understand how the surgeon did not realize it during the months of postoperative checkups, since the internal opening of this new artificial tract was created at a position and height significantly different from that of the internal opening of the original fistula tract.
2 – At the same split point of the fistula tract was a fairly large mass of about 3 cm in diameter. The opinions of the various radiologists and doctors about the nature of this mass were different. Assumptions included, among others, a solid mass that should be removed surgically; a liquid abscess that should be drained; scar tissue, and so on.
At this point, my despair was enormous. The surgeon suggested that I undergo another surgery under general anesthesia in order to see if anything could be done. I realized that the poor guy probably just did not know what to do with me if he offers me a “let’s open & look” solution. I knew that the pain and bleeding I was experiencing would not go away on their own and that they were very likely associated with the large mass observed in the scans, that no one really knew to tell me for sure what it is. I was not willing to have another surgery. The level of uncertainty was great, and after two failed surgeries that made my condition so much worse and caused me such tremendous suffering, I did not want to take any risk in another surgery. Especially a surgery in which no one really knows what will be performed. On the other hand, no other treatment was seen on the horizon. I felt that I had reached a dead end, hopeless, and soon found myself completely desperate and did not know how to proceed from here.
A New Hope
My dear husband saw my great despair, rolled up his sleeves, took a deep breath and plunged into the dark depths of the internet. He has a constant joke that “if I found my wife on the internet, then everything can be found on the internet”. Indeed, he found new information that did not exist when I was first diagnosed with a fistula. This information came to me in the form of a blog in which Noomi and Michal told the stories of their recoveries with an ayurvedic treatment called Kshara Sutra (KS) in India. Of course at first I was skeptical. Medical treatment in India? More successful than all the solutions in western medicine? No way. It must be charlatanism. It’s too good to be true. And besides, I would never go to India. It took me some more time to explore, to read, to talk to Noomi & Michal, to digest, and to understand that I had received the best gift I could have dreamed of – hope for recovery. And not just a cure, but one that gets rid of the whole messy thing called a fistula once and for all. For those who want to read briefly and understand what is Kshara Sutra it is recommended to start in this link. I wrote to the reputed doctor, Dr. Bhat, and sent him my medical records. I also consulted with my family and the doctor in Israel. The amazing family support I received, along with the fact that I did not have many other options, made me decide to go to India. And this was despite the obvious difficulty of putting life on hold for several months and the agonizing difficulty of leaving my children (I still remember crying to Noomi when I asked her how I would stand being apart from my children). It seemed to me like science fiction not to see my children for such a long time.
As soon as I received a positive response from Dr. Bhat, who had invited me to come to Bangalore for treatment, we made arrangements for the trip. On 13 May 2018, I took a deep breath for a life-long adventure in Bangalore, India …
On the importance of diagnosis and mapping of the fistula canal
I flew with my husband to Bangalore and a day later we met with Dr. Bhat. I put aside the unappealing look of the clinic, and realized that I had actually come to a real professional. He sent me to perform a TRUS scan that same day with Dr. Shankar, a specialist radiologist that performs the scan by himself and provides a detailed and clear report with drawings that even those who do not have a PhD can understand. I later found out, from discussions with other patients, that he was probably one of the best radiologists in the world. In my case, his examination did not add any new information about my condition, since I already had several TRUS tests and MRI tests, but I was still relieved to hear that my condition was no worse than I had known until then. But I still want to discuss this point for other patients.
It is extremely important to understand that accurate identification of the path of the fistula (identification of the openings, number of tracts, tract’s position, tract’s shape, etc.) before treatment is critical to the success of any fistula treatment. The approach of some colorectal surgeons is more or less like this: we’ll go into surgery, open the area, and then start mapping the fistula and take care of it. Such an approach is – in my personal opinion and personal experience – irresponsible at best, and catastrophic in the worst case. This is a “trial and error” approach that is not suitable for surgery in such a sensitive area, and in many cases leads to unnecessary injury to the patient. So if you are offered any surgery, even a simple one, you must insist on imaging tests that will give you and your doctor a clear picture of the fistula before deciding on the surgery, and also insist on understanding exactly what is the plan for the surgery procedure.
In the same context, after the TRUS scan and the physical examination Dr. Bhat performed, he gave me a diagnosis (which was also validated during his surgery later) regarding the large mass observed in all my scans. This mass was an accumulation of cellular tissue called “soft granulation”. You could read in this link in detail, but in simple terms it is tissue created when the body tries to overcome a harm or injury. In addition, the body also creates new blood vessels in the region and streams more blood to the area to speed healing and closure of the injured area. Since the body was not able to overcome my internal injury, which was serious, it just continued to produce more and more such cells within the fistula, which had accumulated into a big painful and bleeding mass inside my body. This mass was the main cause of the pain and bleeding that grew worse over time, and also the main reason that my outer incision did not close or heal.
In my case, the injury was internal and occurred during surgery #1 performed by the private surgeon. What happened was that the end of the probe (the surgical instrument with which they enter the fistula tract and insert the Seton thread, which is a long, thin and sharp instrument) during its insertion through the same “knee shape” in the fistula tract, punctured a hole in the tract and created the same splitting branch already observed in the MRI after surgery #1 (and recall no doctor gave any significance to this finding). This injury was severe and caused the infection that raged in my body after surgery #1. I later received this article written by Dr. Tozer, one of the UK’s leading experts on colorectal surgery, listing the 10 most common mistakes in treating perianal diseases. Mistake number 5 in this article describes exactly what happened in my surgery and is not a rare mistake. Now look, I was not happy in any way to hear this diagnosis. But I do admit that I also felt relieved when I realized that I was not a neurotic madwoman who was looking for esoteric reasons for her simple problem and thought she knew better than the experts. Apparently, sometimes 2+2 simply equals 4.
KASHARA SUTRA
At the end of May 2018, I underwent the initial surgery by Dr. Bhat under spinal anesthesia at “Shobha” Hospital in Bangalore, during which Dr. Bhat took out the entire mass of soft granulation tissue and cleaned the area. He created a “disconnection” between the two tracts of the fistula so that the original fistula would not “feed” the artificial fistula. He inserted a thread into the original fistula tract to begin the KS treatment later. The surgery lasted about 40 minutes and passed successfully. The nurses and anesthesiologists at the hospital were charming and professional, I stayed there for a day and then I was dismissed from the hospital.
In the first month after surgery, the doctor asked me to come to his clinic twice a day on a regular basis. At each visit to the clinic, the doctor examined me, examined the progress of the KS treatment, examined the incision and my general condition, examined the area for infection, and treated accordingly. From time to time he would replace the KS thread. Sometimes he would prescribe various Ayurvedic medicines, and sometimes he would give antibiotics if he suspected a local infection. The nurses were packing the wound, including internal dressings with pads soaked with medical oils and Ayurvedic medicines that had to be inserted into the tract. After about a month, my recovery was progressing and the frequency of visits to the clinic decreased to once a day. The wisdom of the doctor during this treatment was to verify the regeneration of cells within the fistula tract before replacing the next thread. This is why monitoring the patient frequently is very important – the physical examination allows the doctor to make sure that there is no space left behind as the thread and the tract progress downwards, toward the surface. In addition, he has to make sure that the rate of cutting the tract is very slow so that there is no damage to the sphincter muscles, but only a gentle cut that is quickly cured by the medications that are applied to the KS thread.
Dr. Bhat has done all that and more, during every day in my four months in Bangalore. He is a very professional and experienced physician who has already treated thousands of fistula patients and who is a specialist in the KS treatment, Ayurvedic medicine and Western medicine. His attitude to his patients is holistic in the sense that he sees the patient before him as a whole and not as a body with an anatomical tract that needs to be cut. He is a very modest and pleasant person who calms his patients and accompanies them all the way. He is a doctor who takes full responsibility for his patients, and gives them confidence in this difficult process. I really do not have enough words to describe what an amazing doctor he is. The nurses in his clinic and his staff are courteous and professional, and often encouraged me during difficult moments I was experiencing there.
In addition to my complicated fistula treatment, Dr. Bhat also treated another problem I have had for many years called pilonidal sinus. This is a condition in which a subcutaneous canal develops in the tailbone area, sometimes becoming infected and causing inflammation or pus. This problem may cause local pain or discomfort, swelling, discharge and more… Yes, the god of colorectal diseases definitely loves me… I have no other explanation for all this “good” I have been fortunate to get. Lucky for me, the KS method is also applicable to this problem. Dr Bhat inserted an additional thread to the sinus in the tail bone, and also replaced it from time to time until the tract completely disappeared. This was not the main goal of the treatment, but I still note it here for patients with a pilonidal sinus who probably do not know about this alternative treatment (which in most cases does not require surgery, only local anesthesia at the clinic to insert the first thread).
About two and a half months after surgery, the doctor cut the last centimeter of the fistula that remained after the KS treatment and showed me the thread outside the body. It was a moment of victory. The artificial tract that was created in surgery back home was more difficult to treat and did not recover at the expected rate. Another nerve-wracking wait of about a month passed with medication and external dressings, until at the end of August a repeated TRUS scan showed that this tract was almost completely closed. The doctor declared that I was fistula free. The absolute victory has come! It took me a long time to comprehend this miracle (to this day I am still in the process of internalization). I stayed in Bangalore a few weeks later for the wound packing and last examinations. On 13 September 2018, exactly four months after the day I left my country, I returned home safe and healthy, with no fistula, without discharge, without bleeding and without pain.
Chori Chori
And what about everything aside the medical treatment, you ask? After all, four months alone in India is a big deal by itself. So first of all, for the start of journey I did not go by myself. My husband accompanied me in the first period until recovery from surgery, and my sister’s charming husband took a leave from his work and came to India for another three weeks to accompany me and support me. After that I felt better and could easily manage alone. My dear sister and mother enlisted from the very first moment to help us with the care of our children and I knew that together with my amazing husband they were a task force around the clock to help me get through the “India operation”. I could not ask for better help & support. I have no doubt that without them I would not have been able to make this journey. The longing for my children was insanely difficult, but a regular video call every evening helped me and them through this difficult period.
When I arrived in India it was the first time I had visited the Far East. I admit that the initial shock was not simple. I suffered very much from the smells, from the crazy traffic, from the endless honking in the roads, from the overcrowding, from the spicy food, and generally I thought to myself, “OMG, how can I spend a few months in this place?!”. I was afraid to cross the road alone due to the mix of trucks, vehicles, buses, motorized rickshaws, motorcycles, pedestrians and cows, that no one knew who or what would come from which direction. As time went by and as my medical condition improved, I managed to start walking in the city, meeting new people, and fill the time left after the daily treatments with interesting things. Bangalore has a lot of good Western restaurants, so I was glad I could give up Indian food (except for the excellent Nan and Chapatti made in India). The weather is very pleasant and stable and not as hot and humid as other places in India. Bangalore also has a tiny Israeli community of warm people who always took care of me and hosted me. I met Suzy who is truly a very special person, that rightfully earned the nickname “the angel of the fistulas”, who was supportive of Michal and Noomi in the past and then for me, and the connection between us was warm and of family nature. I got to know some amazing local Indians who taught me so much about India and cared for me when I was away from home. Hemanth, the taxi driver who drove me to the clinic on a daily basis, became a close friend and told me interesting stories about politics in India (and I thought that Indira Gandhi was a family relative of Mahatma Gandhi!), about Hindu religion and gods (why does Ganesha have an elephant face?), about corruption, about the different castes, the local customs, the movie stars who are considered almost gods, and even entertained us at his home with his warm family. A dear friend from my job connected me to a few other local residents in Bangalore who just wanted to help me with whatever was needed. I strolled through temples, palaces and gardens in the city, enrolled in interesting courses and began to study meditation for the first time in my life. I joined a study group of the Bhagavad Gita, the Hindi canonical text, taught by a retired physics teacher, in her small apartment without accepting any payment in return. I even got to participate in an interesting lecture by the 14th Dalai Lama in Bangalore. No doubt my attitude to the place soon changed, and as time passed I realized what is the charm people who traveled or lived in India were talking about. India is a special place where tradition, spirituality, philosophy, medicine, high-tech and modernity blend together in a graceful natural way. A country that really does not resemble any other country in the world, and experiencing it closely was ultimately an unexpected bonus for me. I have gained in so many ways on this journey. I am grateful to India, to Dr. Bhat and to my wonderful family, that thanks to them I have received this wonderful gift of a complete recovery.
