The Show must go On
In 2007 I awoke in a hospital in southern Vermont to a doctor leaning over my groggy face and asking; "Are you Jewish?" In my post first colonoscopy state, I didn't register that this was perhaps an odd question, and just replied; Yes. "You have Ulcerative Colitis. It's more common in the Jewish population." That was it, off I went with a bottle of anti-inflamatory medication and little idea what that meant for my present life or my future. I was relieved to have an explanation for my abdominal pain and rectal bleeding and had no reason to believe that anything would change except for taking a few pills at mealtime. I was training to be an aerialist in a small town. I lived in the woods and had dial-up internet. I took the pills and dealt with the pain and life went on. I went on tour with a circus, kept up with rigorous training and lived my dream of being a professional aerialist. I still experienced symptoms, but I pushed through.
In 2010 things took a hard turn. I was bleeding, having severe urgency and making it through my performances with Immodium, as little food as possible and shear will. I remember once lying on the floor after an aerial silks act feeling my heart beat throughout my whole body as I tried to catch my breath. Days later as I lay on the floor of the bathroom crying in pain, I finally said "take me to the ER". I ended up in the hospital for two weeks. I lost over 30 pounds. I had high fevers, blood transfusions and they wanted to operate to remove my colon. About a month before this hospitalization I had booked my biggest job to date, performing in a new staging of a famous opera at the Metropolitan Opera. I was determined to make it there and convinced doctors to discharge me from the hospital weak, still symptomatic and on Remicade infusions, with only 4 days before rehearsals started. Somehow, I pushed through.
From early 2010 to the end of 2013 was a very challenging time with my health. I developed an allergy to Remicade, became very wary of biologics and eventually stopped Humira as well. I started to not trust doctors. I was in and out of the hospital. I believed with all the access to alternative medicine and knowledge I was privileged to have (I had even gone back to school to become a health coach), I should be able to heal myself naturally. I tried diets, acupuncture, supplements, chiropractic work, and much more. After a major flare in late October of 2013, I flew to Tennessee to spend 10 days (and a whole lot of money) with a macrobiotic counselor who had helped many people achieve remission. During my stay with her I was neglected and scared. I was declining rapidly, but I had placed my faith in this woman and so I didn't question her. I flew home to New York just before thanksgiving far sicker than I had arrived, but ever obedient and hopeful that if I followed her instructions I would get better. Within a day I was having fevers of 103 degrees, severe constant bleeding, I couldn't eat or barely even drink. On the third morning of being home I stumbled to the bathroom, almost fainting from the pain and I knew deep inside that if I didn't do something, I was going to die.
I kicked and screamed my way to my total colectomy in late november of 2013. I don't remember this time very well, but my family told me I had them each confidentially write what they would do if they were me, fold it and hand it to me to read in private. Even as sick as I was, the decision was extremely hard, but again, something inside me knew I wouldn't make it if I didn't allow the surgery to happen. My surgeon showed my parents a photo of my colon. She was baffled that it hadn't perforated and that I could live with such a diseased, disintegrated organ in my body. I muddled through life with an ostomy and the 3 step procedure to have a Jpouch. It was hard and emotional but I pushed through believing that at the end I was going to be like a happy kangaroo, hoping through life with my miraculous Jpouch, the days of pain and anxiety, a fading memory.
**Spoiler alert! That didn't happen.
Amazing things did happen between my initial surgeries in 2013/14 and now. I fell in love, got married and found a new career I love as an actress. On one level my life was miraculous, but behind the scenes I was suffering. I was in varying degrees and types of pain on a daily basis. I was using the bathroom much more than the expectation after the surgeries I'd had. It still hurt most times to eat. I was spending countless hours and tons of energy trying new treatments, I was drowning in anxiety and often despair. The first question that came to mind with every event outside my home was always, "Where is and what will the bathroom be like." I wasn't able to enjoy the experiences I was having, part of me was present but part of me was always worrying about a bathroom visit, being embarrassed or in pain. I was still pushing through.
When I met Dr Remzi in February of 2017 I cried. He was the first doctor to look at me with compassion, affirm my suffering and tell me he could help. Three more surgeries. More time with an ostomy. He believed there were errors made in the initial surgery that were causing my Jpouch to have mechanical problems. But, the tests came back inconclusive and he told me with honesty that he couldn't prove this belief. More surgeries came with big risks, I would have to decide. The decision did not come easily. I went back and forth, changed my mind a thousand times, cried a lot more, but in the end I made the decision to go through with the surgeries. I trusted this doctor in a way I have never trusted another doctor and I wanted a shot at a better quality of life, not just for me, but for my husband and future family. I wanted a chance at a life with no constant background of pain, with no need to push through.
11 Years, 5 surgeries (plus one more planned for this summer), many hospitalizations, doctors, extreme diets, medications, alternative treatments and a LOT of pain later, I am opening up and sharing my experience with a disease I wanted to keep in the shadows since I first knew I suffered from it. I have to accept what I have lost, I have to accept life with an ostomy, having to use bathrooms at times and in places I would rather not use, saying no to things I want to do, the pain, all of it. This is what is. I lost my colon, I currently have an ostomy, I don't know what the future will bring and I have to accept it all of it. Because, pushing against it, got me nowhere.