I’m 33 years old. Married with two dogs. I have ulcerative colitis. I was diagnosed with UC when I was 16 years old, so I’ve been dealing with it for a long time. For the first 10 years or so, I was able to keep my symptoms largely under control with first-line medicines in the mesalamine family—mostly Asacol. I had the occasional flare, but I was generally able to bring it back under control relatively quickly and was able to keep my disease in remission for up to a year at a time. Over the years, my disease stopped responding as well or as quickly to oral mesalamine, and I was forced to use mesalamine enemas or suppositories. Fortunately, these worked. Unfortunately, they’re not much fun to administer.
In 2004, about 10 years after diagnosis, my disease took a turn for the worse and became much more stubborn. This coincided with my start of law school, but I remain unconvinced that the two are necessarily related (I think, if anything, it had more to do with me quitting smoking at the same time, though I’m sure the additional stress didn’t help ). After another colonoscopy, reconfirming my UC diagnosis, we tried some different mesalamine formulations. We added bacl the mesalamine enemas/suppositories. We tried hydrocortisone enemas—my first steroid. At best, I was able to obtain short-term remission.
In 2005, my disease continued its steady decline, with a fairly major flare in January—
enough to put me back on the table for another colonoscopy. We continued playing with the drugs to find a combination that worked. And then my genius dermatologist put me on Accutane. He (and my GI) assured me it would have no impact on my UC. I asked. Pretty sure they were wrong. I suppose I should sue them.
I got married in August 2005 and graduated law school in 2006—and my disease stayed mostly under control, with only minor/manageable flares. We moved to Phoenix for an amazing, relatively low stress job, and I flared again. Another colonoscopy. Another round of mesalamine roulette trying to find the right formulation. In Fall 2007, we moved back to Northern California to start my job at a law firm. I flared again and simply did not respond to any combination of first-line drugs. I went on oral steroids for the first time. For those who don’t know, prednisone is a joint venture between G-d and Satan. It works almost instantly, but comes with a host of unpleasant side effects. Long-term use is simply not an option—you might be able to keep UC at bay, but you’ll be physically crippled or dead.
Prednisone worked as advertised, and I slowly weaned myself off it. I stayed in remission for a few months and then flared again. More prednisone. Remission (for increasingly shorter periods of time). Wean. Flare. Repeat. This was my 2007 and 2008. I switched GIs to find someone a little more aggressive and up-to-speed on newer treatments and the current medical literature. I was lucky enough to find an excellent doctor at Palo Alto Medical Foundation. Old enough to not scare me; young enough to still keep up with current developments. Extremely thorough and cautious, but 100% invested in getting me well.
My cycle of flare/steroids/flare continued. My remissions became shorter and shorter (if I was even able to fully wean the steroids). It became clear that my disease had progressed, and I was now suffering from what they call steroid refractory ulcerative colitis. So we started to try to everything else…
After much trepidation because of the potential (albeit relatively unlikely) side effects—including sudden onset Hepatosplenic T-Cell Lymphoma, resulting in death within months—I had my first Remicade infusion in August 2009. Cue orchestra and bright sun bursting through the clouds. Remicade worked! Full remission within days. Better than I’d felt in years. No apparent side effects. Horribly expensive, inconvenient to administer, but a true miracle drug.
For about 9 months any way. Over time, I started seeing symptoms in the days/weeks leading up to my next infusion. We increased the dosage. No change. We increased the frequency. No change. We maxed both out—$20,000 worth of drug every 4 weeks. No change. My symptoms began returning sooner and more severe between infusions. Although not completely giving up on Remicade, because it did keep me in at least partial remission for a couple weeks at a time, we explored the remaining options.
6-MP didn’t work, resulting in acute pancreatitis. The Specific Carbohydrate Diet didn’t work after 60 days of rigid adherence, resulting in only significant weight loss, lack of energy, and terminal grumpiness. Phospholipids didn’t work. VSL#3 probiotics didn’t work. We were, quite simply, out of good options.