A Clown in the Medical Circus: Sarcoidosis

As someone with a complicated health profile I may look, “just fine” to the common observer. Those close to me know most days include a fair amount of physical pain, vigilant focus, and mental gymnastics that go along with managing multiple chronic illnesses.

The impacts of course go beyond me, and consistently impact my wife and kids. Together, we manage my Type I diabetes, microscopic colitis, sarcoidosis, and PTSD.

I do not seek or desire pity. My hope is to be seen, heard, and feel a sense of connection to others.

In my experience, sarcoidosis is the least commonly understood condition among people I meet, including some doctors.

According to Mayo Clinic , “Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.”

Sarcoid made it’s official presence known during a very difficult medical stint in the spring of 2022. For years I dealt with what was thought to be only microscopic colitis. Then after having shingles, allergic drug reactions, and episodes of passing out (not related to diabetes) large lumps appeared on both of my arms. They were very tender and after a biopsy turned out to be sarcoid.

As one of my favorite doctors put it, “Sarcoid is a diagnosis of exclusion, and we’re there.”

After the confirmation, I still had doctors tell me it wasn’t technically sarcoid. As if I didn’t deserve a diagnosis of such esteem or my case was not severe enough. I did my homework and asked questions, mostly to be told I was overreacting or exaggerating the situation.

I expect a lot from my medical team. One critical element is collaboration. I refuse to sit in a hospital and claim ignorance or misinformation, simply because I didn’t go to medical school. It’s a team effort and I’m the captain. I want people around me that will think creatively, and contribute to an active and adventurous life for me.

I’m grateful I had my primary care doctor and wound care center, who ultimately figured out it was sarcoid and coordinated with Mayo Clinic in Rochester. I had been referred to Mayo years earlier for my GI challenges, so I was able to visit them for sarcoid as well.

Later in the summer of 2022, after exhausting medicinal options to treat my colitis, I was still averaging more than 30 trips to the bathroom a day. It was an impossible way to survive, and therefore the call was made to completely remove my colon. The post-surgery biopsy turned up colitis, as expected, but also included evidence of sarcoid.

Given sarcoid can have an impact on both your heart and lungs, as well as other organs, I return to Mayo for screening on a regular basis. I’m heading back this spring and will document my journey in something I’m calling “Extra Mayo”.

Mayo Clinic has a helpful patient informational page that all first-time visitors should check out.

I will discuss what a trip looks like, including fun places to go in town for patients or caregivers. Mayo trips aren’t easy, but the community of Rochester has a wonderful way of embracing visitors.

I’ll write about the whole living without a colon or fully functioning pancreas soon. But I thought it would be good to provide a summary of sarcoid and my experience thus far for those that have never heard of it or others that may manage it and wish to connect.

Please reach out if you have questions or would like to connect about your journey with a chronic illness. You can send us an email through our website or message us on Instagram: evergreen_adventures_mt .