CF Care Moves to Focus on Gastrointestinal Issues

Gastrointestinal issues cause serious health and quality-of-life problems for people with cystic fibrosis. That's why it was good to learn about the GI-focused research and care being done.

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Cade Hovater
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Plenary 3 entitled, Advancing the GI Frontier, was presented by Dr. Steven D. Freedman MD, PhD, a professor of medicine at Harvard University and a world-renowned expert in cystic fibrosis gastrointestinal disease, and came complete with a Star Trek theme with little starship Enterprises that moved along with the slides. Space was the final frontier in Star Trek. And although a cure is the final frontier in CF, GI care is a frontier we haven't yet conquered.  

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Watch the full plenary on Facebook Live.

So why am I qualified to talk about this plenary and GI in particular? Here are my bona fides: meconium ileus, bowel resection and reconstruction, pancreatic insufficiencyfeeding tube placement, gallbladder removal, two surgeries to prevent reflux, elevated liver enzymes, bowel obstructions, a GI bleed, abdominal pain, struggle with weight, and probably a few other things.

As a child, I went to school terrified almost every day. Thoughts ran through my head regularly: How many times am I going to need to go to the bathroom? Why does my stomach rumble right when the classroom is quietest? Is today the day I'll have to miss school or go home early because of severe abdominal pain? Only now, with 25 years of perspective, do I realize how GI issues dominated my CF experience at that time. I was short and skinny, self-conscious about my feeding tube, and generally just wanted to feel better.

Because of the progress we've made in the lung health of people with CF, we can begin to focus on GI issues. Just living with those symptoms is no longer good enough. GI issues can be maddening to deal with and I dealt with just about all of them as a child.

Needless to say, my pediatric GI doctors knew me quite well. However, I've never seen an adult gastroenterologist regularly. There just aren't enough CF-trained adult GI specialists to go around. A survey done by Community Voice showed that GI symptoms are very common and are a priority to those living with CF. Thankfully, Dr. Freedman, along with the wonderful Dr. Drucy Borowitz and others, came together to create DIGEST. DIGEST is a project to train GI specialists in CF GI care as they partner with dietitians as part of the multidisciplinary CF care team and improve research. Hopefully DIGEST will give us the new clinicians and research we need.

I won't bore you by rehashing the entire presentation -- best to hear it from Dr. Freedman himself. However, I would like to highlight a point in his talk that struck a chord with me. The risk of colon cancer in people with CF is greater than in the general population. There are likely three reasons for this: an altered GI microbiome, the high-fat CF diet, and CFTR is an anti-oncogene, meaning it tends to suppress cancer.

Colorectal guidelines now recommend that routine screening colonoscopies occur every five years beginning at age 40. I had my first colonoscopy about three years ago due to a GI bleed from long-term NSAID use. Despite all the horror stories and black humor, it wasn't that bad. The bowel prep isn't exactly fun, but it's a lot less painful and scary than colon cancer. Even though I'm a few years away from 40, I plan to ask my care team about having another colonoscopy sooner. A more aggressive colonoscopy schedule might be warranted with my history.

The good news is that work is already being done to conquer the GI frontier.

GALAXY is an interesting study that seeks to develop a GI equivalent of FEV1. PROMISE is also studying Trikafta™ and its impact on the GI tract and the associated symptoms. GI disease markers are now coming into use for clinical trials.

Liver ultrasound studies have been undertaken to better diagnose CF liver disease and hopefully start treatment sooner. These are all great data points that suggest the future for GI treatment in CF is bright! To learn more, you can watch the full plenary on Facebook Live.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Cade is a 36-year-old adult with cystic fibrosis from Muscle Shoals, Ala. He graduated from Birmingham-Southern College with a BS in biology. During college, he completed two semesters of CFTR research at the University of Alabama at Birmingham CF research center with Drs. JP Clancy and Steve Rowe. After graduating, Cade worked for a year part-time as an assistant to CF researcher Dr. Eric Sorscher. In addition, Cade has volunteered with the CF Foundation locally and nationally. He enjoys live music, photography, dogs, cheesy humor, and spending time with friends and family.

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