Kelly vs. the Pill Case

Previously on WDTM

Last fall when my GI doctor brought up the subject of stopping my Crohn’s medication, I was skeptical. I thought chronic illness required chronic medication. Well, that’s not always the case. Recent research suggests IBD patients who have been in remission for five or more years and have stable lab values (like me) could most likely stop their medication with minimal risk of a flare. He told me to think about it, and we would discuss again after my colonoscopy in the spring.

Fast Forward One Year

All went well with the scope (the-patient-is-fine), we revisited the subject of stopping my medication and I decided to go for it! I relegated my pill case to the junk drawer and have been medication free for the past four months. Last week at my follow up appointment my doctor informed me that all my lab values looked great, vitals were good, and he saw absolutely no signs of active disease! He said I could continue to be medication free and wouldn’t need to return or get labs drawn until April of 2019!

As I walked out of the office, a mix of emotions came over me. Of course I was thrilled to receive a positive report regarding my health and yet I was a wee bit scared of my new found freedom. No pill case to fill and no blood draws or office visits, is this heaven? As I drove home I wondered, “Am I allowed to feel this way, feel normal? Am I still ill if I no longer have a pill case to fill? What if I flare?” Oh boy!

Be Grateful For Whatever Comes -Rumi

Upon returning home, I took some time to process the thoughts and fears running through my mind. I determined my life and health status are not defined by the number of pills in a case or trips to the doctor. I am more than Crohn’s. So, hell yeah I’m allowed to feel normal and savor every minute of NOT filling a pill case or seeing a doctor. Yes I’m still ill; though Crohn’s is quiet, I have other health issues still in need of tending. And if Crohn’s decides to get noisy, I’m fine with that. I am content to enjoy my medication free moment for however long it lasts. And if I need to retrieve my pill case, I know exactly where to find it.

Putting the 'special' in Specialist

I have used this platform to address the ups and downs of living a chronically ill life. While my last post was rather bleak, this post tells a different story. Good doctors are out there and if you’re lucky, you just might find a great one!

My gastroenterologist recently told me there was a good chance I could go off medication! I was floored as I thought I’d be taking pills for the rest of my life. He explained to me the recent research suggesting IBD patients who have been in remission for five or more years and have stable lab values could most likely stop their medication. This doesn’t mean I am cured; there is always the chance of a flare but I’ll take it. He told me he wanted to plant the seed and for me to think about it. He would like to wait until my next colonoscopy and if all is quiet we can proceed.

I know he did not make this recommendation on a whim. He is Mr. Science and does his homework; if something is not in the literature, he doesn’t have time for it. So if he believes I could safely discontinue my medication, I trust him with all my heart and soul. Why so much faith? Here’s a bit of our back story that should explain things.

I had been living with Crohn’s for four years when we met.  I was in the midst of a wicked flare and my doctor at the time was puzzled so he sent me to an IBD specialist at a university hospital. Our first appointment was over an hour long. This new-to-me doctor took copious amounts of notes (by hand) as I dictated the detailed account of my medical history. I remember leaving the appointment with a clear understanding of his plan and more importantly, feeling listened to and cared for.

It’s been nine years since that first appointment and he is still amazing to me. He has seen me at my worst and best, answered any and every question I’ve ever put to him, and has tolerated all my nonsensical chatter about what I find on the internet (with the occasional eye roll of course.) He even knows of Neurofibromatosis and is always careful to consider it when addressing my health and potential treatments.

So that’s why I trust him, he listens and knows me, Kelly. He also gives me something so vital to my well-being that no pill or procedure ever could: peace of mind.