At the end of March, I returned to the Seattle area for a year’s worth of medical care in 10 days. Even though my medical insurance covers me throughout the United States, I feel it is important to maintain centralized healthcare while I am on the road, especially with my chronic disease.
There is a lot to be said for taking care of all your annual medical appointments in less than two weeks. My PCP wanted a fasting blood sugar. No problem – I fasted for a colonoscopy and asked the nurses to draw my blood before the procedure. The dentist recommended replacing a filling. Easy peasy – I was already scheduled for a cleaning anyway.
The annual physical went well. The full-body dermatological exam – no issues; this pale white girl with lots of moles and a history of sunburns as a child didn’t need anything cut off or burned off. The mammo looked good. I’m not a big fan of dental appointments, but I got through deep cleaning, the re-seating of a crown, a root canal, and the re-filling of a cavity. I got my every-two-months Entyvio infusion for Crohn’s. I am off anti-depression medications for the first time in 10 years after meeting with my psychiatrist, a wonderful development which I attribute to ceasing the practice of law and living a much less stressful life.
There was even some good news at the office visit with my gastroenterologist. I made my pitch to go off methotrexate, which I injected in my abdomen once a week to help prevent rejection of Entyvio. He replied that most rejections occur within the first year of getting the infusion, and I have been on Entyvio for one year. In that year I initially took Azathioprine to help prevent the development of antibodies, then methotrexate. I recounted my miserable experience with methotrexate, which is poisonous chemotherapy, citing terrible nausea and hair loss. The doctor agreed that I could stop taking it! Yay me!
The following week I returned to my GI for my colonoscopy. Here’s where things get encouraging, yet confusing and frustrating. My colon looked the best I have seen it in 20 years. Biopsies showed inflammation only in the rectum. The polyps found were not pre-cancerous, which is a welcome change. The doctor’s impression was that Entyvio is working, obviously, that I should continue it, and we should recheck with another colonoscopy in 1.5 to 2 years. No colonoscopy again next year? Heaven!
I am grateful and relieved to get this news. But I am still having symptoms of diarrhea and “gotta get to the bathroom right now” every day. I discussed why this could be at length with my doctor.
The inflammation found in the rectum could be a culprit, and he is prescribing medication for that. Also, in addition to Crohn’s disease, I could have an additional overlay of IBD or IBS – lucky me. Regarding urgency, all those years of my poor muscles fighting to keep it all together have likely taken their toll, and there’s absolutely nothing that can be done for that. To assist my doctor in drilling down on the continuing problem, I have begun to keep a journal of daily activity. Yep, folks. I’m keeping a poop diary. Oiy.
Now that I am no longer taking methotrexate, there is also the specter of antibodies developing in response to the drug, which would, at some point, cease Entyvio’s effectiveness. I vowed not to futurize about this, especially in light of the comforting news that two more drugs are in trials right now.
So where does this all leave me for now? Still having daily symptoms of up to three events per day, still thankful I travel with a toilet, clearly much better than I was last year, but with that aura of “mystery illness” that no one can quite explain. But, as when I was a litigator, I will take my victories where I find them and be thankful for the good news.