Losing My IBD Specialist… Again.

Have you ever had a doctor who treats your IBD and means the world to you, and now they can no longer see you?

I have. I’m going on my third experience of this nature. While I am well-versed in this type of loss and everything always worked out, the fear has not lessened.

First loss of care

At the start of 2006, I was a newly diagnosed person with Crohn’s disease. Although I had lived with the disease in its active state for over a decade, the confirmation took close to a decade to come through. Many doctors and misdiagnoses came in between then. This is why an innocuous little letter shook me to the core.

The first follow-up visit from the diagnosis was coming soon, and I figured the envelope was a bill or appointment reminder. The very GI who swore to me he would figure it out and would get me better was gone. He half kept his promise, at least.

I opened the letter and it was a very dry set of words informing me that Dr. XXXXX was no longer with the practice and my care was moved to Dr. XXXXX.

A myriad of emotions went through my head. I called to reschedule the appointment and went through the motions of meeting this new doctor. A man who looked older than my grandpa greeted me as I walked into the exam room.

I didn’t know any better

Thus began a rather unfruitful medical relationship. He did the bare minimum in terms of treatment. Not once did he provide a drop of education about Inflammatory Bowel Disease, let alone the risks associated with Crohn’s disease or ulcerative colitis. Nor did he provide info on symptoms I should be aware of as concerning.

Nothing.

It should come as no surprise that when I moved a year later, I didn’t seek out another IBD doctor. About seven years after diagnosis, I found myself in a similar position to how 2005 had ended. I was very ill and didn’t have a GI.

Thanks to a referral from someone in a local Crohn’s and Colitis Foundation Facebook group, I found a GI that looked like a good fit. I called and they got me in right away.

Meeting IBD GI #2

We reviewed my old paperwork from adolescent to adult years. By this time, I had just concluded a self-directed crash-course in Crohn’s disease. She asked something that put me at ease. “What have you learned about Crohn’s?”

In a quick summary, I gave her the facts of what I knew from systemic inflammation to the need for biologics and my preference of what biologic to start with first. When I finished, she added in some statistics about surgery potential in general. She also mentioned how we may have to fight for certain treatments due insurance interference and unfortunately steroids would be needed.

It was a good almost two year run with her, but as the saying goes, “All good things must come to an end.”

Bye bye GI #2

She broke the news, “I’m leaving the practice and am not allowed to see any of you for two years.” I immediately burst into tears.

No, this is not legal. But the practice owner threatened to tie her up in civil court for years and drain her financially.

Though I understood why she was leaving and was happy for her, I had so many fears flying through my brain. She hugged me and promised it would be okay and two years would fly by.

The plan…

I called her new-to-me office a few months prior to the ban’s end. The assistant told me when their 2016 book would open and to call back then. I called back as directed at the 1 year and 11-month mark, and they booked me for January 2016.

Things moved quickly once we reconnected at that first visit. We had two years to cover file wise and scopes to schedule. We also picked up a discussion started prior to her announcing her departure.

The plan was to package my case up and send it to a doctor she highly respected who specialized in hard-to-treat Crohn’s cases. I respond to meds, but lose response rather quickly, and that was a concern of hers considering we didn’t have all that many options on the market at the start of 2016.

We still don’t, and it’s now the end of 2018.

Hello GI #3

I’m eternally grateful that my local GI placed my case into the care of this brilliant lady doctor who happens to specialize in not only IBD but other autoimmune mediated issues. As predicted, the second biologic was failing me and I was highly allergic by the time I was moved to GI #3’s care. We clicked immediately.

She kept me afloat until the medication I am currently on was approved by the FDA in late 2016. We tried a few things in between, but this was really the turning point. Although I still have a ways to go, she has helped get me to the point I am at now, which makes it even harder to write this.

Bye bye GI #3

My friend who is also a patient of GI #3 called to break the news. I was crushed for both of us.

You would think after the third time, I would be well versed in this kind of goodbye. I’m not. I am supposed to see her by the year’s end, which is fitting in a way, as I will meet GI #4 in January.

This is a great opportunity for GI #3, and so many people will benefit from her presence, as she is moving to an area with very little care available for its IBD patients. If insurance will allow, I may continue to see her out of state.

Hello, the fear

With that said, the fear of starting with a new IBD doctor remains. I always worry that a new doctor, even one who is good friends with my current specialist, will try to change my diagnosis or medication. Or what if they miss something that my former doctor never would have?

I am trying to keep those voices in my head quiet. There are a lot of patients who know me and know we share the same doctor, and they too will become displaced. Some of us have already spoken and commiserated.

Know that you are not alone in your worries. And just like everything else we have faced, we will get through it.

Have you ever experienced losing multiple specialists over the years, and how have you dealt with it?