The Many Colors of Cystic Fibrosis: Black (Part 1)

If you haven’t read my columns before, allow me to reintroduce myself. My name is Nicole Kohr. I am a cystic fibrosis (CF) patient, a bilateral lung transplant recipient, and a passionate musical theater fan. In this column, I use “Joseph and the Technicolor Dreamcoat” as a guide to narrate my journey with CF.

After writing about beige, yellow, purple, brown, clear, green, red and blue, let’s talk about the color that incorporates them all…

CF and the color black

Overall, black is not the most soothing color in a health care setting. Often, the color represents a serious problem. It could also correspond with mold, decay, or excrement. It may even symbolize darkness, death, or evil. Let’s break it down.

Black stool

I’ve experienced black stool throughout my life, and it’s not always a serious issue. I have gastroparesis (diagnosed in 2017) and cystic fibrosis related diabetes (CFRD - diagnosed in 2022). Between the two, I experience many gastrointestinal changes that require diet adjustments, and these diet changes alone can cause black stool.

I am anemic, a condition marked by a deficiency of red blood cells or hemoglobin, so I take supplemental iron pills. These pills can cause black stools. Dark colored foods such as dark chocolate can cause black stools. Let’s just say a black Christmas stool is more expected than a red and green stool. Other times, my black stool is an indicator of infection. An ulcer or small bacteria overgrowth in the bowel can result in black stools. I’ve experienced both.

I’m thankful to document my lack of experience with the most serious conditions such as cancer and gastrointestinal bleeds.

Black sinus drainage

Due to my ongoing rhinosinusitis, I flush my sinuses three times a day. My go-to brand is the Neil Sinus Med rinse set, and my doctor prescribes interchanging antibiotics that I mix into the solution. When I do this, I clear my sinuses of old, black bacteria. This can be mucus or blood, but usually prove to be old blood clots that needed time to dissolve and loosen in order to clear my nasal passage.

Black nasal drainage can also be an indicator of a fungal infection. I’ve battled fungal infections such as aspergillus and ecoli for most of my life. They often colonize in my lungs, sinuses, and GI despite ongoing fungal medication. I’m currently on two fungal medications to ease the side effects (i.e. fevers, respiratory infections) and to protect my new lungs from drainage.

In the next article, I will explore fashion, activities, grief, and entertainment related to the color black. Can you think of other black objects in your journey with cystic fibrosis in the meantime?