Skip to main content

Even if you're labeled “medically refractory” don't give up the fight

The hardest part of chronic illness is staying hopeful.

On the left is a picture of me three years ago, just days after being hospitalized for my eighth surgery related to Crohn’s disease. Before and after that surgery, I was walking around with a backpack that held the vitamins, nutrients, and calories that were pumped into my right arm for 12 hours a day because I wasn’t able to absorb enough of them on my own. I had gotten used to being hospitalized on a monthly basis. My bowels would form strictures and close off, so food wouldn’t pass through my intestine (hence the tube in my nose which suctioned bile out of my stomach). During these awful bowel obstructions, I'd be on the bathroom floor with tears rolling down my eyes. When I wasn’t vomiting, I was moaning and gasping through the pain as gas and bile would build up inside of my body with no possible exit because my intestines became scarred and narrow. I couldn’t even stand up enough to walk to my dad’s truck to go to the hospital, let alone fathom the idea of sitting upright in a chair at the ER waiting to be treated. 

Something so seemingly simple as, “How are you?” became a difficult question to answer truthfully. I didn’t even know what words were appropriate as a response. Around this time, I was also being passed from specialist to specialist because doctors were saying I was “medically refractory” ... meaning resistant to treatment. After failing every available medicine for Crohn’s disease, my only course of treatment became repetitive surgeries. I was on a daily regimen of opioids to control the pain related to the surgeries. At the time of this picture, I had no idea that I would still have more surgery, bowel obstructions, and hospitalizations in the future. I also had no idea what else the future would hold for me.

The picture on the right is of me now. I no longer need to walk around with my backpack because I'm able to get enough vitamins and nutrients from foods that I eat on my own. The list of foods that I can’t eat is much smaller than the list of foods that I can eat, and I no longer worry if eating a plain bagel will land me in the hospital for a week. I haven’t been hospitalized in over a year and I haven’t had surgery for almost two years. I work a full-time job and no longer need to use prescription pain medicine. I’m fortunate to have enough energy to go kayaking, exercise five times a week, and play intramural sports. I was given the opportunity to try a new medication for Crohn’s disease before it was even approved and it has put me in remission.

Years ago, I felt defeated because I didn’t think there was any possibility that my quality of life would get better. Nowadays I have to remind myself of the things that happened in my past because I’ve become so accustomed to a new way of living. Sometimes I don’t remember being hooked up to TPN, but then I see the nine scars in my upper right arm, each one indicating a different place where my PICC line was inserted for those feedings. I’ve also gotten to the point where I’m not able to differentiate which scars on my abdomen are from which surgery. They all just blend together next to my permanent ileostomy bag. Having a chronic disease still presents some challenges, especially related to how much of my intestines were removed and how that affects the rest of my body. But those challenges are nothing compared to how I was living just a few years ago. Because there is no cure for the disease, I’m also aware that all of my previous symptoms could come back anytime in the future. That fact just helps remind me to enjoy each day as much as I possibly can right now.

To all of the people out there suffering from “medically refractory” conditions, I hope you’re also able to get to the point where you’ll be able to forget about how much pain and suffering you went through in your past. I hope you’re able to fight through the mental and physical pain now, knowing that someday a new kind of treatment will give you a completely different life. And I hope that when somebody asks you how you’re doing, you will be able to truthfully tell them that you’re good.