With Cystic Fibrosis, I Often Struggle to Maintain a Healthy Weight

Over 20 years ago, John Mayer sang, “Your body is a wonderland.” While that song isn’t about me, I do agree that my body is a wonderland.

And by wonderland, I mean that it’s a wonder I’ve made it to 30.

The human body is absolutely fascinating in terms of what it can absorb and withstand. For example, I once did a stage dive at a concert and no one caught me, so I landed on my back. Surprisingly, my back didn’t break, but boy, did it hurt for a while.

When I was in the hospital a month ago, I had an allergic reaction to penicillin and probably would’ve died if not for an EpiPen.

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Cystic fibrosis and weight control

All my life, I’ve struggled with weight, which isn’t a foreign concept in the cystic fibrosis community. While everyone has different reasons for this, the general struggle is the same.

My weight and body shape have fluctuated so many times over the years that I’ve lost count. In the past five years, however, it’s been more drastic than usual, and my wife, family, and friends have watched me struggle to both lose and gain weight.

Questions have been raised about what’s going on with me, and I understand the concern, because ultimately, it comes from a place of love.

Five years ago, I weighed between 175 and 180 pounds. My medical team even joked that they might have to put me on a diet. I’m only 5 feet, 7 inches, so my body mass index (BMI) was on the higher side, and I was deemed overweight. That’s uncommon for people with cystic fibrosis (CF), but my metabolism had slowed down.

When I had sepsis in 2019, and then surgery to remove my gallbladder and appendix a few months later, I lost some weight and sat between 150 and 160 pounds. Not only was it a much better weight for me, but I also looked healthier. My BMI was easing away from being overweight, which made both my medical team and me happy.

What I now understand is that between graduating from college and having sepsis, my body took a beating. I was stressing it out for years by not eating a healthy diet and staying up way too late watching West Coast sports and doing standup comedy. I can’t drink alcohol, so eating was the only way to cope with the stress I’d put myself through on weekends.

After my gallbladder and appendix were removed, I tried implementing a healthier lifestyle. I moved in with my fiancée, who is now my wife, and started going to bed at a normal hour. I also was eating more healthily and avoided putting my body through the wear and tear that I did before.

I now weigh about 130 pounds. I know that’s way too skinny. But here’s the catch: I’d argue that I eat more now than I did before, but it’s a much healthier diet. Yet I struggle to put on weight. It can’t just be cystic fibrosis-related diabetes, can it?

When I was in the hospital last year, I weighed about 115 pounds and was immediately put on insulin. There were multiple reasons my weight got as low as it did, including lung infections, unstable blood sugars, pancreas deficiency, and a severe cough from pneumonia. Coughing can actually cause weight loss, which I didn’t know until last year.

After that hospitalization, I gained 20 pounds and looked a lot healthier. However, over the last year, my weight has stagnated, and eventually, I lost some weight when lung infections started creeping back, as they always do. I began coughing more and went to the hospital for pneumonia, but thankfully, they caught it early, unlike last year.

Because I’ve always struggled with my weight, I’ve also had difficulty accepting my body image. I don’t have body dysmorphia, but I’ve always been acutely aware that I’m smaller than other family members and friends. I know there are people with CF who are weightlifters or simply in great physical shape, and I’m happy for them. I know they’ve struggled with their bodies like I have.

Eventually, I’ll get back to my target weight between 150 and 160 pounds. I believe that something will eventually click in my body and turn my metabolism around, because that’s what’s happened to me in the past. It’s just taking this wonderland of a body a little longer than I’d like.

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.