A gastroenterologist should be central to every CF care team

I’ll never forget my daughter’s college graduation — not because I was there cheering in the audience, but because I wasn’t. Instead of watching her walk across the stage in person, I was watching the ceremony on my phone from the intensive care unit, where I was fighting a bowel obstruction that hospitalized me for a month and required surgery.

Moments like that stay with you. They remind you how much cystic fibrosis (CF) takes — not just from your body, but from your life.

My biggest CF battles haven’t always occurred in my lungs. I was born with meconium ileus, a blockage of the small intestine, and since then, my digestive system has carried the heaviest burden of this disease. The struggles of multiple hospitalizations for blockages, the trauma of repeated surgeries, and the endless challenges of colonoscopy prep have been just as defining as any lung infection or breathing treatment for me.

Yet, through all these years, my CF care has always been led by a pulmonologist.

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Time to change the model

I, of course, understand how that model began. Decades ago, when people with CF rarely lived into adulthood, lung disease posed the greatest threat to survival. Pulmonologists carried the torch, pushing treatments forward and extending our lives. But here we are now, living longer, fuller lives thanks to CFTR modulators and other medical advances. But I can’t help asking: Why hasn’t our care team evolved or advanced with us?

How might my experience have been different if a gastroenterologist trained specifically in CF had been a central part of my care team? Would some obstructions have been prevented? Could my nutrition and gut health have been managed in ways that spared me months in the hospital? Would I have been sitting in that auditorium instead of lying in a hospital bed?

A pulmonologist can’t be expected to carry it all, as CF is a multisystem disease. Our digestive health shouldn’t be an afterthought; it’s central to how we live, feel, and even how our lungs function. Malabsorption, pancreatic insufficiency, CF-related diabetes, liver disease, and bowel obstructions aren’t minor side issues. For many of us, they’re the battles we fight most often.

I don’t say this to diminish pulmonologists’ incredible role in our community. Without them, I wouldn’t be here. But as someone who has lived with repeated digestive complications, I feel the gap every time I step into the CF clinic.

I envision a model where pulmonologists and gastroenterologists work together, where gastrointestinal care isn’t a reaction to a crisis, but proactively woven into every appointment. Doctors who deeply understand CF’s digestive complexities can innovate, advocate, and help us live longer and better lives.

I often wonder how many milestones have been missed by others in the CF community because digestive health isn’t given equal weight in our CF care. I wonder what the future would look like if it were prioritized as much as respiratory health.

CF has never been just about the lungs. It’s time our care reflected that.

Is there another type of specialist you wish your core CF care team included? I would love to hear about it in the comments below.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.