From 2008 to 2017, I was lucky with my doctor selection. When I was first diagnosed with Crohn's, I was living in my hometown of Los Alamos, New Mexico, a town of 20,000 with one local GI, Dr. Bradley Rowberry (Los Alamos Medical Center). He was my GI for about a year until I decided I wanted to live in California full time.
Upon making that decision in 2009, I set about finding a GI in Thousand Oaks, California. It amazed me how many options there were for GIs in and around the area - I had never had so many choices for doctors! I essentially choose a doctor at random after checking reviews (back then all I had was doctor office websites and healthgrades.com - no Yelp, no Google reviews, no friends with IBD...). I got lucky in my selection of Dr. Gilbert Simoni (Advanced Gastroenterology). He and his office staff elevated my care and had strong knowledge of how to treat Crohn's. I elected to stick with him as my GI, even after I moved to Torrance in the fall of 2010. He was still my doctor when I was hospitalized in 2011 in Torrance, and after I moved to San Diego for grad school at UCSD.
In 2012, Dr. Simoni referred me for a second opinion at Cedar's Sinai in LA. I drove up to LA from San Diego one morning to see Dr. Stephan Targan - I was an hour late due to traffic, despite leaving at 5am. Clearly that wasn't going to work out, but I only had one additional appointment there for a test (more on that later). It was after that that I started taking Humira.
When I was hospitalized in 2013 in San Diego, it became clear that I needed a local GI. I couldn't continue traveling up to LA, let alone Thousand Oaks, to see my GI. While I was in the ICU, one of my nurses was also a Crohn's patient, and recommended Dr. Alissa Speziale at Sharp Reese Stealy. I was able to schedule an appointment with Dr. Speziale quickly (after crying on the phone to the scheduler the day I was released), and quickly knew why the nurse had recommended her. She had incredible bedside manner, and truly cared about my well-being! I continued seeing Dr. Speziale during my time in San Diego until we moved to Phoenix in 2017.
Dr. Speziale was able to refer me to Dr. Shabana Pasha at Mayo Clinic in Arizona; she is a specialist in the exact disease issues I suffer from with Crohn's (that is, inflammation of the small intestine). I saw Dr. Pasha once, then had a follow up with one of her residents... and then moved to Las Vegas.
Let's just say that Las Vegas is not just a climatic desert, but also a doctor desert! There are very few GIs to choose from, and from my experience and the stories of others, I am not impressed by the selection. Any good doctors have terrible office staff - a crucial part of a successful practice.
Let me paint you a picture: It was my 30th birthday. I had Shingles (because why wouldn't I?), as well as a UTI (again, because why wouldn't I?). I was waiting on my doctor's office and insurance company to approve a medication (Budesonide) that would help me to feel better, after having mistakenly received two half-doses of my main medication (Remicade). I called my insurance company to get an update on the status of the prior authorization, only to learn that the necessary paperwork had not been submitted a week before, as I had expected.When I called the GI office's prior authorization specialist, she informed me that she had been waiting on the doctor's signature, and that she had just received it, and so would submit the paperwork. Later that day, I was looking at my insurance online account, and discovered that the medication I was trying to get approved didn't need authorization if the doctor prescribed it correctly!
That was the last straw after a string of other mishaps:
- It took 10 weeks for my Remicade to get approved (should have only taken 5-10 business days).
- I received the wrong dose of Remicade (400 mg vs 800 mg). Twice.
- My second doctor's appointment lasted 3 minutes, and the only time the doctor made physical contact with me was to shake my hand. The rest of the appointment was spent by him telling me I couldn't get pregnant without telling him first (mind you, I had not brought up pregnancy or kids with him at all).
- My third doctor's appointment was spent with me asking him to help me feel better due to his prescribing the incorrect dose of Remicade.
After a long, teary conversation with my mom (on my birthday) about what to do, I determined that I needed to go out of state to see a doctor. The only other doctor I would consider seeing in Las Vegas was part of the same practice as my current doctor, and so they shared office staff. I couldn't do that to myself.
My three main options that I was considering were Dr. Simoni in Thousand Oaks, Dr. Pasha in Scottsdale, or Dr. Speziale in San Diego. I elected to go back to Dr. Speziale, easily my favorite doctor, and seeing her would give me the opportunity to go back to San Diego every couple of months!
So aside from a quality GI, who else is on my medical team?
- Primary - someone who is willing to work with other doctors on the team to coordinate care
- Gynecologist - because lady parts are important and closely connected to the gut
- Dermatologist - because Crohn's patients (especially those on certain medications) are more susceptible to skin cancer
- Hematologist - to address anemia
- Endocrinologist - to check bone density (certain medications can cause bone deterioration)
- Surgeon - someone who can fix you when the medications fail
- Home Health nurse - to administer Remicade via IV
- Pharmacist - to give me the rest of my medications
- Cigna TheraCare specialist - someone from the insurance program for people on specialty medications or with complex diseases
Let's find a cure for Crohn's!Today, I recommitted to participating in the Lake Tahoe Triathlon with Team Challenge on August 26th. You can support my fundraising efforts here.
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