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.

Dear Physician: See Beyond the Diagnosis and See Me

Osteoporosis and I recently celebrated our six month anniversary. We commemorated the occasion with a follow-up visit to the endocrinologist. However, two weeks prior I received a phone call from the office informing me the practitioner I saw during my last visit had left the practice and I would be seeing someone named Katie. Fantastic!

Katie walks in and looks to be about 12 years old. I mentally call myself out for making judgements and try to keep an open mind. She asks what questions I have regarding the Prolia; I offer my concerns, fears, and thoughts. For one, people who have weak immune systems or take other medicines that affect the immune system may have an increased chance of having serious infections with Prolia. When I started to tell her I had discussed it with my GI doctor, she interrupted me.

“Well, Crohn’s really wouldn’t be an issue; we would be more concerned about someone like a transplant patient that would be taking immunosuppressing medication.”

I quickly told her, “Well, that’s me.  I take the same immunosuppressant drug that transplant patients take! So …?”

“Like I said, Crohn’s is not an issue.”

And my plan of eating better, taking my supplements, being more active, and rescanning in a year?  Katie squashed it like a bug stating my insurance probably wouldn’t pay for another scan so soon; I would be wasting time.

While Katie claimed to understand my stance, she put up every roadblock she could as she insisted the osteoporosis would only get worse, best to slow it down, start the medication now. She also did her best to scare me (my perception) as she spoke of the dangers of falling and risking a fracture. Her big whoop-di-doo advice? Find someone else to shovel snow this winter and use lots of salt on my driveway and sidewalks. I thought, “Good lord, does she think I’m an 80 year old widow?!”

As a parting gift, she addressed my elevated glucose and the risk for pre-diabetes. She recommended I cut back on carbohydrates and rattled off a list of the usual suspects. When she mentioned rice and corn, she tagged on “I know you don’t eat those.” In the next fleeting seconds, I thought to myself, “What the hell does she mean by that? Is she making assumptions about Crohn’s and diet… should I school her? Nah, I can tell she already knows everything.”  I nod in agreement.

As I am leaving I tell her, “I’m not being cavalier and careless; I love medicine, it has saved my life. I just want to make sure I have a solid understanding of my situation and the available options before I am injected with yet another medication.” She reminds me again of the many other people who tolerate the medication just fine.

Six months ago, I left this office in tears. Today I left feeling frustrated. I didn’t feel cared for and I certainly didn’t feel listened to. So I’m digging in, there is no way in hell I’m taking this medication until I read more about it. Yes, I realize there are people who have taken the injections and have had minimal or no issues but to quote one of my favorite villains of the cinema, Miss Lina Lamont, “People? I ain’t people!” And I’ve decided to search for a new Endocrinologist practice. Not for a second opinion per se, I know I have osteoporosis; I would like to have an honest conversation with my healthcare provider, one where there is listening and learning and not a lecture.Why is that too much to ask?

Photo credit: http://counsellingtutor.com