Sure, my parents drilled the whole “eat healthy, sleep well, drink water” thing into me and my sisters, but that was never entirely applicable to me. I had different rules. Having had Crohn’s disease since an early age, I was always seriously underweight and struggled to get enough nutrients. The goal for the first decade of my life was to eat as much as possible and specifically fatty foods that would build up my mass. But I was never hungry anyway; eating always ended in pain so getting enough food into me was truly quite difficult. I even tried supplemental nutrition drinks like Pediasure, Boost, and Kids Essentials but it wasn’t enough to help me gain weight.

At age nine, I began nasogastric (NG) tube feedings, which continued over the next three years. During this time, my diet became much more limited. But the NG tube was successful in getting me to a healthy body weight, where other medications and therapies had not been able to. For a brief while, I was at the average BMI range for my age. A couple years after this therapy finished, however, an unfortunate series of events landed me in the hospital. I was so sick. I ended up getting a PICC that delivered nearly all of my “food” via Total Parenteral Nutrition (TPN) and I barely ate anything for three months.

TPN was not able to help my colon heal enough, and I made the decision to have a total colectomy. It is arguably the best medical decision I’ve ever made. With my ostomy, for the first time in my life, I could eat whatever I wanted with no consequences—no pain, no lack of appetite, no medical complications. And so, I did.

But the problem I faced—and am still facing—is that I don’t know how to eat. Children are taught impulse control at a young age. They learn what to eat, when, how much of it, and how to understand satiety and control their hunger. I never received that education. Instead of learning how to manage my hunger with healthy options, doctors were focusing on trying to work up my appetite and feeding me fatty foods, so I wouldn’t be 30lbs under the growth curve. To this day, I still have a hard time differentiating between hunger and nausea. For much of my life, those two sensations came hand-in-hand.

This is a struggle that a lot of IBD patients experience, although it’s important to mention that not all of them go through it. Plenty of patients are entirely capable of bouncing back, and that is awesome. But for some of us, who are diagnosed at a young age with a disease that affects our lifestyle, this can be a common theme. It’s a hardship faced by children with Crohn’s disease, Ulcerative Colitis, Diabetes, IBS, Celiac, and even Depression. With these diseases, especially when we’re diagnosed young, we’re taught a very different lifestyle; one that meets us where we are and is focused on what being healthy means at the time.

So, right now, I’m working on learning some of the lessons I missed out on. I am finally learning the lessons on impulse control that kids learn at five. I’m developing healthier eating habits, which I’ve understood factually but am only now putting into action. I’m getting myself to the gym now, because exercise was never a necessity for me, nor was it even something I had the energy for. 

I have been a little overweight for the past few years, which is not an easy thing to be as a 17-year-old female in 2019 America. But I see it as an opportunity for growth—this is amazing! For the first time in my life, my Crohn’s is well-enough controlled that I can focus on my lifestyle. I can develop healthy eating habits without worrying whether high-fiber vegetables or iron-rich meats will send me to the bathroom for an hour. I can go to the gym and lift weights and feel super cool when I can do more crunches than my friends (after a decade of Crohn’s, I think this one is a given).

All of this is a whole lifestyle change for me. And the experience has been confusing and difficult, but I am so thrilled I get to finally make this transition. While it’s 100% worth it – making big changes to the lifestyle I’ve known for so long is hard. And I imagine it's probably hard for many more people than just me. So, I've been asking myself how can we support IBD patients who are considering and taking on massive lifestyle adjustments?

To be honest, there isn’t a one-size-fits-all solution here. A lot of it will depend on a person’s unique situation. One thing I can recommend across the board is to talk about it. Be open and honest about what you are thinking, feeling and experiencing – this goes for patients, as well as parents and caregivers. Obviously, before you start adjusting your lifestyle, you want to be sure your disease – whichever one it is – is under control. Once you’re feeling better and ready to make changes, it’s important to sit down with your care team to talk about maintaining good health. You might want to set up an appointment with a nutrition expert. If you’re considering adding exercise into your life, perhaps a session with a personal trainer. There are lots of people out there who are ready to support you as you make these transitions – as you relearn how to live.

I also want to say one more time that not all patients will have this experience. If making changes to lifestyle isn’t something that you’re able to do, please know that this is NOT your fault. A combination of symptoms, medications, therapies, and emotional situations affect patients’ lifestyles and the choices they must make. So, if you are not at a point where your health is stable enough to make big shifts in your lifestyle, please remember that you did nothing wrong.

If you want to talk about it, the PAC is a great group of young patients with varied experiences and wisdom to share. Join us at and we can support each other!


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