Losing My IBD Specialist, Again - The Backup Plan

I previously wrote about how I lost my first IBD specialist. She moved out of state for an amazing opportunity. Well, I am on the brink of losing IBD Specialist #2, who I started seeing this past January. She is about to switch to a new practice and has, thankfully, given ample warning for her switch. That said, her current office is in disarray and that has left me feeling worried.

Over the past few months, I’ve had a couple of appointments with my current Crohn’s disease specialist. She’s great, but her office’s support staff and Nurse Practitioner do not communicate well.

Collectively, they have messed up prescriptions for myself and friends who are patients. They've created a few issues with refilling my biologic treatment on time. So, when I was due to start prepping for a colonoscopy last week, I decided to cancel.

A backup plan with my local GI doctor

I don’t recommend doing something like this unless you have a backup. I activated the backup plan before canceling by calling my local GI’s office. Thankfully, her office got me in pretty quickly.

My local GI is smart, kind, and knows when to outsource her hard-to-treat patients to specialists. A couple of years ago, I lost her for two years and a few months. This was due to a contract issue when she moved to a new practice. The contract issue also made it so her old patients couldn't see other doctors at the new practice either. It was devastating.

For those who aren’t familiar with my story, I have a local GI and an inflammatory bowel disease specialist. The specialist solely treats Crohn’s disease and ulcerative colitis. I'm considered a complex case, and it's great to have two sets of eyes watching over things. I have great respect for my local GI knowing when to ask for assistance.

Bad information from "gatekeepers" at doctor's offices

So, back to pulling the advocate card. Last week, I called my local GI’s office and told them I needed to schedule my annual follow up. I also informed them about what was going on with IBD Specialist #2 moving. The receptionist didn't totally understand. It got to the point where she brought the office manager into the equation and botched the call.

It became a bad game of telephone to the point where the office manager thought I wasn’t supposed to be seen anymore by my local GI. When I asked them to check the notes, they found the note stating, “Seen annually to maintain a spot in practice, co-managed by a specialist.” This note saved me and then they allowed the appointment.

Unfortunately, this is an issue going on at many medical offices across the country. Every day, I see posts from friends, colleagues, and community members discussing bad info from gatekeepers.

I’m tired y’all!

The struggles to receive good care for Crohn's and UC

And what really stirs my grits is that peers who are far more ill with Crohn’s and ulcerative colitis in comparison to me have to struggle harder. They have to battle harder against their symptoms while battling gatekeepers for appointments, getting messages to the appropriate staff, and have to keep emotions in check.

Thankfully, I got an appointment with my local GI. We went over everything with the transition from IBD specialist #1 to #2, my current state of health, and issues at the new office. I laid out my concerns, including doing a colonoscopy with a practice having issues and the specialist gearing up to leaving. 

I presented my plan to her, which has her performing the next colonoscopy. She performed my last three scopes. So, it made sense to me to ask her to do the next one. And then, when IBD specialist #2 is settled at her new office, local GI can send me back over to the new office.

Making my own plan allowed this all to happen

Local GI is on board and that’s the plan for now. I’m totally frustrated that this is going on. However, I am also relieved that she agreed with the plan and is going to perform my next set of scopes.

So, if you find yourself in what feels like an impossible situation with your GI or IBD specialist, take a minute and try to formulate a plan. You might just surprise yourself.