Denying My CF Is Making Me Hungry

Denying My CF Is Making Me Hungry
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I went to bed hungry last night, and I woke up scared of food.

This is my new reality. Although this is an old-new one I’ve lived (and lived to forget) time and again, I still don’t have it mastered.

Years ago, I couldn’t eat more than mashed potatoes and broth for months while recovering from a Nissen fundoplication surgery, which improved my lung function greatly, but left my insides too swollen to swallow much. Years later, I could eat nothing by mouth for weeks at a time due to pancreas and liver flares, or colon clogs and motility holdups that caused partial obstructions. We starve the problem. We wait for it to pass.

And although I’ve done it before, I lose a piece of my psychology every single time I wait. I dream about solid foods. Crunchy foods. Savory foods. And I’m bitter and mean and noxious, like the hangry roommate to avoid at all costs.

Even so, I have it easier than many of my peers. Some can’t eat at all, relying on TPN or feeds permanently. This reality does not elude me. Still, then I get hungry and wish I could eat my perspective for dinner. (Even bitter foods are welcome these days.)

(Courtesy of Bailey Anne Vincent)

I watch my husband eat pizza crust and my daughters nibble salad and my parents sip more than one cup of coffee a day, and I wonder if this life is even worth it without those things in it (the food, not the people — but I guess I’ll keep them, too).

In the same way I’ve written about this subject before, I cycle around again and again until my digestion improves, then I forcibly forget about it as quickly as it happened. And then it happens again.

The last couple weeks have dealt new digestive blows that have us wondering if another “colon” surgery is in my future. Due to a decline in function and an uptick in symptoms, I fear I have possibly messed up the remaining parts and pieces for good, through no fault of my own.

Except … is it my fault? I have eaten a few salads in recent months, driven to madness by my desire for spinach and ranch. I gained 5 to 7 pounds during 2020 by daring to eat things like “half a gluten-free sandwich” or “a small bowl of cereal.” You know, wild stuff. And I think to myself, “If I can gain weight from eating half a sandwich every few days, isn’t that sad? Doesn’t that mean I need more sandwiches? Deserve more sandwiches?”

And now, I’m losing it all again. The weight. The joy in food. The hope of half-sandwiches. And I don’t know how not to be bitter and mean and noxious, because this is not a life I used to have, and even though I’ve lived with the ebb and flow of it for years now, it’s not one I want to accept.

(Courtesy of Bailey Anne Vincent)

Chronic constipation, prolapsed rectums, and life-threatening obstructions are a huge part of this life, and they’re not going away just because I experience a year or two of improvement, less inflammation, or dare I say it, luck. We never know when increased mucus production or inflamed internal mechanisms will bog us down again, with nothing left to do but blame ourselves for a Chick-Fil-A salad or two.

When will I realize that this won’t go away after a good night’s sleep and some extra vitamins? That just because I didn’t know it existed within me growing up doesn’t make it any less persistent? It’s a disease process. This is how it works, and it’s not on me to educate everyone else around me (all the time), or be responsible for my decline and feel guilty about things I can’t control. If my body is going to prolapse another organ because it’s trying to survive, that’s not a choice I made for myself.

Friends of mine have lost their lives from chronic clogs that shredded bowels or led to additional downslide. One was even placed on extracorporeal membrane oxygenation, and later needed a second double-lung transplant, simply because their distal intestinal obstruction syndrome struck so quickly and mightily that they aspirated too much acid, and it shut their body down.

The things we tell ourselves “aren’t CF” because they don’t involve new organs or fresh infections are just as CF-related as everything else we deal with, and they’re not our fault.

Read that again, future me: It is not your fault.

Will I ever believe myself? I don’t know yet. But for now, I have no choice but to feel hungry and angry, fear food, and then try to start again.

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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.

Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.
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Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.

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