My Crohn's Diaries

After the last few weeks have been less than ideal for me, I felt like I needed a change. I felt let down by my doctor’s office and their lack of taking my reports of pain and struggle seriously. I felt helpless, a little, and hopeless. I read a book recently that discussed Body Grief, which I’ll write a post about because I think all of you would benefit from that concept too, but I was, in retrospect, in the middle of Body Grief about my condition and my inability to control it.

In a moment of desperation, I filled out an appointment request for the Mayo Clinic Gastroenterology department in Scottsdale. The form asked for basics like where I lived, my name, why I was requesting an appointment, and my insurance information, and then I hit submit. I assumed they’d decline me, seeing as though I’m a fairly standard Crohn’s patient. I figured I’d never hear back.

Let me also say here, I am extremely lucky to live close enough to a Mayo location to even try to get in there. And, miraculously, or maybe not miraculously at all, I got a call the same day from one of their appointment coordinators. He asked a bunch of questions about my medical condition, who my current doctor was, so they could request my records, my availability, and then he let me know that they had to do a medical review to determine whether I’d get an appointment with them or not. He said it could take up to a week for them to reach a decision, and they’d let me know when that happened. That call happened on a Friday afternoon, only hours after I’d submitted the appointment request.

I spent the weekend Googling what the medical review even meant, trying to work out what my chances were. I know Mayo is a highly coveted place to go. I know their renown makes them busy. I know they can’t see everyone.

On Monday, though, only one business day after I submitted the appointment request, I got a notification in their patient portal that I was approved! I had an appointment for the next week! One thing to note here is I didn’t get to pick the appointment day or time, which was okay with me, but I have a very flexible job and life, really. I know that system may not work for everyone. They did give me a number to call if the appointment didn’t work for me, though, so it sounds like they’d work with you to find a better time if you needed to.

In the next few days, I was called regarding some of my medical records not being sent over from my current doctor’s office, and then I also received a message requesting my current medications list, allergies, and pharmacy information. I double- triple-checked that everything was sent over (though that didn’t end up being true…) and worried over what would happen.

A few days before the appointment, I got a message in the portal with some general information about the Gastroenterology department. The message stated that often, Mayo acts more as a consultant for other Gastroenterologists and they often send patients back to their current doctors with Mayo’s recommendations after the initial appointment. I worried a bit over the dynamics of that, with whether it would make things awkward with my current doctor, but decided to go forward anyway. I wanted another opinion. I wanted another perspective. Then, maybe, it wouldn’t itch at me so, the low-level dismissiveness of my current situation.

I brought my mom with me to my appointment. I don’t know why, really, except that it felt like a big deal and I wanted her to help me listen. Help me ask questions. I’m a fully grown adult, but I still need my mom, you know? While she’s been on this journey with me from the start, I’m pretty sparse with the details of the condition to save us both some discomfort, so this was her first glimpse into the realities of it.

We arrived early, earlier than the required half-an-hour-before check-in time. There was no one in the waiting room when we arrived. The chairs were particularly nice, as silly as that sounds. A man talked loudly on the phone in the corner.

They called me back about ten minutes before my appointment, took my height and weight, and walked me into my room. The doctor was already waiting for me in the hallway, as the nurse pointed out. The nurse took my blood pressure and temperature, and then, in seconds, the doctor came in.

I have to say now how wowed I was by her. It was clear she had looked over my records, had taken the time to prepare for the appointment, and cared about what I had to say. She had me talk her through my whole experience so far, from diagnosis to the current moment. We talked through every treatment, every flare-up, what worked and what didn’t. She asked what I thought was working and what wasn’t. She asked about the timing of things. How long after my last dose of Remicade had this test occurred? How long after this injection did I have my last colonoscopy?

I explained that the doctor I was seeing wasn’t 100% sure if I had Crohn’s or Ulcerative Colitis. I explained that my symptoms weren’t always typical (constipation rather than diarrhea and a whole lot of vomiting). She zeroed in on that, saying it wasn’t very typical, especially with vomiting, and she wondered aloud if something else might be happening too.

She was with me in that room for at least forty-five minutes, asking questions, following along my timeline, allowing my opinion space next to hers. Immediately, she recommended increasing the frequency of my Remicade infusions, upping the dose. Immediately, she began planning testing for me. She recommended an MRI enterography rather than a colonoscopy to get a better sense of what’s going on. She said it would show her my whole digestive tract and what inflammation or damage was there, both now and previously. She also recommended an ultrasound in the future as well.

Then, she stopped and asked if I wanted to stay on with Mayo or if I wanted her to send me back to my current doctor. “I just assumed,” she said, laughing. I was delighted. I had assumed, because of the message they had sent, that they wouldn’t keep me on. But, they did! They are! How wonderful!

The doctor is also referring me to a dietician, one of their nurses for an educational visit, and their pharmacist. I have to schedule a follow-up for a few weeks from now to “deep-dive” into my lifestyle, like diet, exercise, and things like that. I have a lot of to-dos to do, but also, I feel like I have a lot of support and education waiting for me, and I’m excited to do it.

My appointment was on Wednesday this week, just four days ago. Minutes after my appointment, I received a message from the doctor summarizing EVERYTHING. It was incredibly long and detailed, and made it so I wouldn’t forget anything. Since then, I’ve already had my follow-up appointment scheduled, my nurse education visit scheduled, and had my infusion center call about Mayo taking over my care. Luckily, it sounds like I’ll be able to stay with my current infusion center so I can keep the nurse I love! Yay!

I am still waiting to schedule the MRI enterography, but the doctor said she wanted it done ASAP, so hopefully it’ll be in the next week or two. I also haven’t heard from the pharmacist or the dietician yet, but I’m sure that’s coming soon, too. It has only been one business day since my appointment.

We’ll see how long insurance takes to approve my more frequent Remicade doses. For now, the doctor wants me to do them every month rather than every two months and at a higher dose. Hopefully, that’ll stop the flare-ups from happening, and then we can move on to the calmer parts of healing whatever damage is there.

I have to say I am rather dazzled by the whole process and by the doctor. Their efficiency is astounding. The doctor’s dedication to education and to listening is astounding. Forty-five minutes straight with a doctor is astounding. I’m used to ten-minute appointments, to not being asked many questions, to having to try to communicate through messaging portals and hurried phone calls.

I know not everyone can, but if you are able to give it a shot, I’d highly recommend trying to get in with the Gastroenterology department at Mayo Clinic Scottsdale. Even just for a consult. Their thoroughness, their efficiency, and their access to resources are beyond anything I’ve ever experienced.

For the first time in a while, I’m hopeful! And I know how lucky I am to get to say that. To get an appointment at all. My appointment was on the last day of last year, which I think is fitting. I am entering this new year with new hope. And I’m very, very grateful for that!

I’ll keep you updated on what comes next. In the meantime, happy new year!