It 2012, I had the surgery that changed my life, for the worst.
In the last three and a half years I saw more than twenty different doctors, more than ten different specialists.
Three and a half years ago I was diagnosed with an anal fissure. I saw a proctologist who told me that there are several ways to treat the fissure and that one of the treatments is sure to correct the situation and leave me pain free. His reassurance calmed me down and offered me hope of being free from pain.
The first treatment I tried was an ointment. After a month of applying the ointment as directed and suffering debilitating pain, I was given two other ointments to try. These too produced no reduction in pain.
Botox injection was the next treatment I tried. The relief lasted five days, after that the pain and spasms returned. At this point, I also changed my diet, I ate only vegetables, no meat, no fatty foods; I lost about ten pounds in a short period of time, nothing helped.
As the pain was excruciating, I was not able to leave my bedroom. Every day, from 8 am until 7 or 8 pm, I was in massive continues pain. This situation lasted approximately two months. I was beginning to feel hopeless and helpless. After spending that much time at home, in agony, I decided to see a surgeon in Los Angeles, California, where I lived.
Accompanied by my wife, I met with the surgeon to talk about Lateral Internal Sphincterotomy surgery. The doctor was very pleasant and informed us that the surgery is uncomplicated and she performs this surgery on a regular basis. The doctor assured us that my problem will be solved. (The doctor did tell me of the risks involved in the surgery, ............... which did not include the situation I am currently in and which I'll describe in the coming paragraphs.)
After thinking a lot and suffering nonstop with massive pain and daily bathroom related humiliation I decided to have the surgery. This 2012 decision, was the worst decision of my life. Following the surgery, the situation deteriorated dramatically.
I had the surgery; the recovery was one of the most painful thing I ever experienced. The first few days were so painful I couldn’t go to the bathroom, it literally felt as if someone was cutting me with a sword. I called the doctor and described the pain. During the follow up visit, she gave me a numbing injection. The injection was excruciatingly painful. After the area became numb, the doctor called a nurse to administer an enema so that I could empty my bowels.
The pain and discomfort continued; I experienced a burning feeling after going to the bathroom and I was not able to sit longer than twenty minutes on a chair. In short I experienced no relief and decided to return to the surgeon several more times. Each time the doctor examined me stating that everything was fine. After several visits of me complaining about the pain, and the doctor insisting that all is fine, she prescribed an antidepressant, concluding that the pain is psychological. Needless to say, the antidepressant did not help, my agony continued.
Next, I went to see my proctologist, and told him the story of my surgery and of my ongoing pain.
After a painful checkup (I was still very sensitive from the surgery) he told me that I have an infection, caused by the surgery, and that the infection created a Fistula.
Now, I was in a panic; I thought that a fistula, more often than not, can only be corrected by surgery. However the proctologist, said that he will treat the fistula with an ointment. The ointment did help address the fistula, however the pain and discomfort I was experiencing remained.
Next, I decided to see another doctor, a gastroenterologist. After meeting with him several times, he concluded that he couldn't help me and prescribed 50mg Tramadol pills to take whenever I was having discomfort, in addition, he created an ointment compound, which was aimed at easing the pain. (I still take the pills).
My pain and discomfort continued. In desperation, I went to see another proctologist. This proctologist said that I'm "clean" and therefore could not find the reason for my pain. The pain continued, so I went to see one more proctologist, who diagnosed me with a "sensitive" rectum.
I gave up on seeking medical help and resigned myself to the pain, and I managed my life around it.
After a few months of living in pain, I decided again to try and look for a solution. I went to more doctors and experts, with no positive or mildly positive improvement.
After 2 years of being practically disabled, and on pain medication and assorted ointments, my wife, two daughters and I moved to New York.
Once in New York, I decided that no matter what, I have to get to the bottom of this intolerable situation so that I am able to lead a normal life and be a support for my wife and my daughters. I went to see more doctors. The first doctor was a colorectal-surgeon. He began by administering an MRI and X-ray. The tests did not show anything beyond the old fistula. He then suggest a total checkup under sedation.
When I came home after this checkup and my numbing injection wore off, I experienced beyond "Level 10" pain. After trying to reduce the pain by taking two Percocet, followed by five Advil and two sleeping pills I was still in excruciating pain! I ended up in the hospital, where I was administered morphine.
The same colorectal surgeon suggested a pain management doctor. After telling the pain management doctor my story, he concluded that during the first surgery, the Lateral Internal
Sphincterotomy, several nerves were inadvertently cut, these "cut" nerves continually shoot off pain, again giving me no relief.
As a remedy, the pain management doctor suggested that I take Gabapentin, 800mg 3 times a day. For the first time, in a long time, I had hope. After approximately a month as my pain persisted, I realized, once again that this is not a solution.
I went to see yet another pain management doctor. This doctor suggest a Nerve Block Below the Coccyx procedure. He explained that if the first Nerve Block procedure will yield improvement, then a follow up procedure would be advisable.
Following this Nerve Block I felt 5% better for approximately two months. When I tried to schedule a second procedure, my insurance company Tri Net Aetna disapproved, stating that it is an "Experimental Procedure." My pleas of help went unanswered.
I went to see another pain management doctor with the hopes of finding a "non-experimental" procedure that will allow me to live relatively pain free. After sharing my history, this doctor concluded that nothing can be done, and I am doomed to live with the pain, and take pain pills, every day, for the rest of my life!
This type of existence I cannot accept.
I'm now 38 years old, now, my wife is an amazing woman who supports me unconditionally, I have two little incredible daughters, even with these amazingly positive elements in my life, my life is still unbearable. My physical situation, (my disability) is a dominant force in my personal life as well as in my job.
I can barely drive my car, I can't work sitting down, I can't take long flights, I can't use a bathroom outside my home because of the resulting discomfort, and as a consequence, I'm tired and angry most of the time.
To be aware of your rectum all day, or feel your rectum skin irritated is indescribable, it is a living nightmare.
I'm looking for someone who can literally save my life, be it part of a study, a proven treatment or any other solution that will help me figure out how to address this nightmare and allow me to live a life not dominated by pain. I am open to all possibilities.