The Many Colors of Cystic Fibrosis: Brown (Part 1)
Last updated: May 2023
If you haven’t read my previous article, “The Many Colors of Cystic Fibrosis: Clear”, just know that I am a huge fan of Joseph and the Technicolor Dreamcoat”. Now it’s time to talk about the fourth color in Joseph’s dream coat: brown!
My gastrointestinal system and I have a rocky relationship. Cystic fibrosis (CF) patients like me have a lot of mucus in their intestine(s), which complicates the digestion process. I also have a defective pancreas, meaning I have a hard time absorbing what I eat.1
Prior to my CF diagnosis at age five, my bowel movements were painful and untimely. There were times where I’d go over a week without pooping. According to my mom, she could see a fully formed poop jutting through my fragile body as an infant, and the act of having a bowel movement warranted tears.
I was prescribed enzymes shortly after my diagnosis. Enzymes assist the pancreas with absorption by breaking down fats, starches, and protein. Mom and I knew my doctors took a step in the right direction because, despite the continued infrequency, my bowel movements were less painful. I even started to gain some weight.
As I grew, my enzyme dose grew with me.
“I’m back to pooping once a week.” I’d explain to my care team.
“Increase your enzymes to four pills with a meal and three with a snack.” my doctors would reply.
“Now I’m having loose stools!” I’d exclaim a week later.
“Let’s try putting you on the lower dosage!”
This was the start of a larger problem called dumping, a condition that forces your small intestine to release poop too quickly.2
For example, let’s say I ate an entire box of pasta on Monday. Enzymes rarely battled my constipation, so I’d go without poop for at least three days. Due to my ravenous appetite, however, I’d keep eating, so I’d be very full by Wednesday evening.
I’d take MiraLAX to help move things along with no success. Then by Friday, my stomach would alert me that I needed a bathroom immediately, and I’d relieve a week’s worth of poop in a matter of seconds.
The fast release made my blood sugar and electrolytes plummet, and often, I’d faint on the toilet.3 By middle school, my mom and I got smart and left a pillow in the bathroom that I could faint on when the time came. Overall, though, that cycle was not healthy.
When I was 18, my care team added antibiotics into the mix to treat small bacterial overgrowth (SIBO). We added a monthly colonoscopy prep to avoid a bowel obstruction. My feeding tube, which was placed in 2017, was one of the biggest adjustments. The surgeons placed it in the middle of my stomach, an inch or two above my belly button, and the tube itself jutted out of me like a faucet. It wasn’t until I started to rapidly lose weight that we took another look at my stomach.
In my next article, I will discuss the final piece of my gastrointestinal journey: gastroparesis.
Read more of Nicole's series, The Many Colors of Cystic Fibrosis, below!
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