Tomorrow, I will get my first infusion of Entyvio, approved by the FDA last May to treat Crohn’s disease. Entyvio is the end of the line – the last drug left in the Crohn’s arsenal that might help me.
In 1997, while traveling internationally for the first time, I thought I had a bout of “travel stomach.” Travelers get diarrhea, right? But, there was blood in the bowl. By the time I returned to Seattle, my symptoms were so severe that I could not leave my apartment. I was 29 years old.
The impression of my first Gastroenterologist was that I had a bleeding ulcer. He scheduled an endoscopy and prescribed steroids. In the intervening days, partners at my law firm approached me cautiously, hearing that a bleeding ulcer was suspected, inquiring if I was “working too hard.” The more I protested, the more they surmised an ulcer was the culprit.
I did not have an ulcer. What I did develop was a feeling of ennui, discontent, and malaise, leading to low-grade depression, caused by Prednisone. My doctor had failed to advise me of Prednisone’s mood-altering effects.
At lunch with a colleague, I expressed my discontent with my apartment, my boyfriend, and my job. He asked, “Aren’t you taking steroids? I would advise you not to make any major life decisions this week, talk to your doctor about Prednisone’s effect on emotions, and talk with the partner in our firm who had a kidney transplant. He will take steroids for the rest of his life.”
When I joined the firm the year before, partner Rich was out of the office for a kidney transplant. I went to Rich’s office after lunch, asking, “Do you take steroids?” He replied, “Yes – are you taking them too?” When I answered in the affirmative, we compared dosages. He inquired, “Are you crying at the drop of a hat?” I said that I was. He commiserated, stating, “Steroids are awful, but they are great anti-infammatories. They are instrumental in keeping me from rejecting my kidney. And since this kidney belonged to my wife, I’d better hang on to it!” I felt a kinship with Rich from that moment on, and he became a great mentor; he tasked me with some of my first important legal projects, critiqued my standup comedy routines, came to my adoption party (there is a story there, and I will tell it some other time), and even doled out romantic advice. Rich is no longer with us, and I miss him very much.
I continued to take Pred and was scheduled for a colonoscopy. It is recommended that most patients get a screening colonoscopy at age 50, but I was having my first, a diagnostic colonoscopy, before the age of 30.
Looking back on the bowel prep now, having had a colonoscopy basically every year since , I laugh at how “awful” I thought it was. Here is what I will tell you about that first prep: It had been recommended that I mix the purgative with root beer to make it easier to drink, and to this day I will not drink a root beer because of it. I also had arranged to pick a friend up at the airport that night. Yeah, that didn’t happen.
At the colonoscopy I was advised that I would be given “conscious sedation.” As the needle was placed in my arm, a nurse was asking another nurse if she should go on a blind date. I woke up in recovery.
I had previously undergone general anesthesia for other procedures, and I was sure I had been “under.” The recovery nurse assured me that I was aware of my surroundings and responded to commands during the procedure. I thought, “That stuff would make a great date rape drug.”
The doctor appeared with the results. He first showed me photos of a healthy colon – a sort of fleshy slinky, all pink and happy with veins running through it. He then showed me photos of my colon – angry and tight and shiny and red, as if I had swallowed 40 grit sandpaper but had not chewed.
I was diagnosed with Ulcerative Colitis.
(To be continued.)