As I write this I am sitting in the infusion center of The Polyclinic in downtown Seattle. The view of the Seattle skyline is lovely, but it provides little distraction to the people inside. I am here because of Crohn’s disease, but most of the patients are here for chemotherapy. Crohn’s versus cancer? I must remind myself to complain less and be more thankful.
The infusion center is broken up into small rooms with curtains, easy chairs, internet connections and televisions. This is not the first time I have been a patient at this facility; I received infusions of Remicade here, until that drug became ineffective.
The Remicade infusion took over three hours, and they tell me the infusion today will take one third of that time. I am happy to hear it, because if I sit still in a chair in the same place for over three hours, I should be in another city when I stand up.
In the words of the Grateful Dead, “What a long strange trip it’s been.” In 1998, after steroids put me in remission, I would have never believed that my disease would progress to this point. I remained mostly symptom-free for two years, until a major flare in 2000. Vowing never again to take steroids, I sought out a new Gastroenterologist, who updated my diagnosis from Ulcerative Colitis to Crohn’s disease following a colonoscopy. She prescribed Asacol.
For several years, Asacol, in the mesalamine family of drugs, kept the flares at bay. We tinkered with the milligrams a few times when symptoms would rear their ugly heads, and at the end I was taking 12 pills per day. A one-month supply came in a bottle the size of a soda can.
Then one day, Asacol stopped working. I switched to Lialda, also in the mesalamine family, which after a short time also became ineffective. Then it was back to steroids to force me into remission, which worked, but as soon as I stopped taking them the symptoms returned, usually in less than 24 hours. I was officially “steroid dependent.”
Then, even the steroids stopped working. I was dubbed “steroid resistant.” I had hated taking steroids. They were so mood altering, and over time they can wreak havoc on your bones and organs. Hell, even my cat’s steroid prescription was limited to six weeks when he had that neurotic scratching problem. Still, steroids had been the only drugs that would put me in remission when all others failed. Now, they were no longer my little unavoidable superheroes.
In February 2013, I met with my GI. She recommended an infusion called Remicade. Because it was an immunosuppressant, she advised that I should not travel to Third World countries, and I would be tested for tuberculosis and hepatitis before therapy began. She informed me that I would be infused every two months. It was imperative never to miss an appointment, because my body would develop a tolerance to the drug. She stated, “Oh, and if you ever get a respiratory infection that results in a productive cough, you should go to the hospital, because with an immunosuppressant like this you are very susceptible to pneumonia.”
I stared at her in disbelief. “You just told me I can never sail around the world.” She looked at me quizzically in her clinical and rather cool fashion, replying, “You have had a chronic disease for 15 years, and it is progressing.” I asked, “What happens if this drug stops working? What’s left?” She replied, “They are making advances in the treatment of Crohn’s disease every day.”
It was the end. of. the. line.
To be continued.