One of my boys… That’s how I usually start a sentence to explain what kind of cookbooks I write. If you’ve been following Comfy Belly for a while, you kind of know the story behind this site. Or at least you know why I write recipes, and what inspires me.
Crohn’s changed my older son’s life in so many ways. And now, as an adult, he’s independently charting his course. For the brief history, here’s his Crohn’s timeline.
As parents, we try to give our children all the knowledge, skills, and advantages we can, in the hope that they’ll be strong, successful, and able to navigate through life’s ups and downs. And when they walk out the door, we hope we’ve done a decent job.
My older son, Max, hasn’t had an easy childhood, and he’s managed to thrive way beyond what I expected. Last year he drove solo down to Los Angeles to pursue a creative career, and signed up for health care at Cedar Sinai Hospital. He is attempting to live his dream.
If you’re a parent or caretaker, you know that Inflammatory Bowel Disease (IBD) affects everyone. For us, it impacted our other son’s life, our vacations, how we parent, and how we cope with adversity. And while Max was in college and dealing with a flare, my husband and I were parting ways and divorcing. Life doesn’t pause in the face of IBD. Lucky for Max, we’ll always be there for him.
I’m grateful that Max is comfortable sharing his thoughts because I know he doesn’t like to talk a lot about IBD. It’s not what drives his life. Like everyone with IBD, he just deals with it. Every day.
Can you give me a brief bio of your life so far?
Born in a small mining town in the outskirts of Coupon, Pennsylvania, Max Kerwien grew up with Crohn’s Disease and eleven toes, until one was lost in a terrible pressure cooker accident. He now lives in Los Angeles, and is making a brave attempt to become a comedian.
Ok, I actually grew up outside Seattle, WA. I don’t remember my Crohn’s timeline very well, but I can’t remember not having it. I’m 23, and I do live in Los Angeles. I am also trying to be a comedian, so I’ll get back to you in ten years or so with an update on how that’s going.
I’ve taken a lot of medications, been on a lot of diets, seen a lot of doctors, etc. Many people have a similar story. I know people with Crohn’s Disease or Ulcerative Colitis with stories much worse than mine; those who have had twenty colonoscopies a year, those with multiple surgeries, people with ostomy bags and scars aplenty. Pretty much all these people are friends of mine, and they are amazing, unstoppable, beautiful people. I met them all at Camp Oasis, a summer camp where I was a counselor for kids with IBD.
What are you currently doing to keep Crohn’s under control, and is it working?
I am currently on Methotrexate and Stelara, and my inflammation markers are low. I just had surgery in September 2017 to remove six inches of my terminal ileum in my small intestine. As of right now, I have minor symptoms but no pain, which was my primary symptom before the surgery. Both the surgery and my medications seem to be working well. The meds weren’t working before the surgery, but that was because my stricture was tight and mostly scar tissue, which is incurable by medication.
As a kid, what helped you remain optimistic while dealing with the roller coast of various medications, doctors, and hospital emergencies, on top of all the other things in life, like school, friends, sports, and social life?
When I was a kid, I would always prioritize my own mental or emotional needs over my physical ones. I tended to ignore maybe what my body needed to stop the Crohn’s so I could enjoy other things. I think it was a combination of me not taking the disease seriously but also being stubborn.
This led to a lot of events where I actively made things worse so I could have a social life, play sports, etc. I played tennis even when my body was in terrible shape and I was injured or sick. After hospital visits or times when a doctor told me to stay off my feet, I would go out anyway. I remember a particular time when I had steroid shots in my knees to combat the runner’s knee I had developed from tennis. The doctors told me to stay off my feet for a week. I went to a football game that night and walked and stood the entire time.
I would also not swallow pills (because I didn’t like how they tasted), cheat on diets, etc. In this way, I somehow did what I really wanted, like playing sports and socializing, but at a cost to my health. Only now as an adult do I know how to prioritize my health over the things in life I want, and it’s difficult.
The only advice I have is to work around what you can and can’t do. If you want to travel abroad but can’t, maybe you can start with a local camping trip. If you want to play sports but can’t, there are other competitive outlets, like video games (which is what I did).
How do you work through the emotional aspects of having IBD?
I pretty much ignored working through any emotions related to Crohn’s for the first eighteen years of my life. I also think “working through things” is a mature concept and kids with IBD (and kids in general) don’t really understand that they can work through their negative feelings in a healthy way. That’s what I think is so great about Camp Oasis; it allows younger kids to express their feelings about their illness and find solutions in a healthy environment.
What advice would you give to anyone just diagnosed with Crohn’s?
-Find a good doctor
The healthiest I’ve ever been in my life has been because of amazing doctors who wanted the best for me. I know not every doctor is going to be like this, but putting the time in to research and visit different doctors and institutions creates results. I would also put in a word of advice to know that even if you don’t like a doctor, it doesn’t mean their advice isn’t good or that they don’t know what they’re talking about. In a perfect world, your doctor is your friend, but that isn’t always the case and I know a distrust of doctors is one of the reasons people seek alternative treatments.
-Try things, but don’t go crazy
Should you try CBD oil? Yes. Should you try different diets? Yes. Should you buy amethyst crystals and see if putting one under your pillow makes you feel better? No. I know people who take cannabis oil and that makes them feel amazing, and lets them go to work, live an active lifestyle, and be productive. I tried it, and it did nothing for me. The most important thing about Crohn’s and UC is that it’s literally different in everyone.
I met another comedian with Crohn’s disease, and he told me he became better by just working out and not eating pickles anymore. Unbelievable. Just remember that there is such a thing as going “too far” in treatments, and I would be skeptical of people who say they have the one answer (and it’s beets! Beets will cure your disease, give you superpowers, and make you four inches taller!). And if you’re open to trying things but you’re not sure what, read the next part.
-Be involved with the community
I mentioned Camp Oasis above, which is a summer camp that kids with IBD can go to have fun, talk with other kids, and do activities all while an amazing nursing and medical staff is on hand to make sure they don’t run into problems. I’ve been a counselor at the Washington State camp for the past two years, and it’s been one of the best experiences of my life. It definitely made me feel better about having Crohn’s and it also made me feel like I was in a cool special club (because we are).
If that’s not an option for you, there are online resources everywhere. reddit.com/r/crohnsdisease is a forum for people with Crohn’s, and while it’s not perfect, I have gone there many a time to ask “why is there blood in my poop?!?!?” only to realize I ate red vines at the movies earlier that day. People there are very welcoming. Other online resources include crohnsforum.com, comfybelly, patientslikeme, etc. There’s also the Crohn’s and Colitis Foundation, which hosts events around the country and has an online forum. I’ll also include my email (firstname.lastname@example.org) but I am not a doctor! talk to your doctor!
-Every day you have IBD
I have Crohn’s Disease every single day. There are no days off. There are no cheat days. Using this philosophy seems grueling at first, but when you get used to taking care of your well-being it becomes easier. It’s the same thing as budgeting, as traveling, etc. Just remember your priorities.
I usually ask the interviewee to share a recipe, but in your case, would you share one of your poems or something else you’re working on?
Before I had my surgery, I ate soft chicken, eggs, one type of smoothie, and bananas for almost a year. Every other food would scrape my up inside (and believe me, I tried every other food I could). So if you are on this exact same diet, I do have a recipe:
Max’s Chicken Delight
Step 1: Buy a whole ready-made unseasoned chicken. Check for seeds, spices, flour, and other unwanted additives in the ingredients.
Step 2: Eat.
Okay, now I’ll share a poem or two.
I recently published a book of poetry called Late at Night (you can get it for free here: https://www.smashwords.com/books/view/717108)
This poem is from the book, and it’s written from the perspective of a fictional father whose child has Crohn’s disease.
We ruined white by putting it in hospitals. We sacrificed yellow – we sacrificed it to blue, with our painter’s fingers, for green, so two tiny handprints could splatter the wall next to macaroni and sprinkles. We unraveled orange, from slices at soccer To goldfish, and a gold fish, and a tiger, and Tigger. We fossilized pink into a gender, and forgot about the flesh of our loved ones, the cheeks of a cold little girl, and the hard cafeteria trays that serve her a fruited jello and pills and a liquid-based diet. We lathered red in the cracks of our lives, in our scraped knees and our chipped fire trucks, over our french fries and fireplaces, and under the covers, with a flashlight. We weaponized black when we let it outline scar tissue illuminated on a bright background. We watched Hazel become a mixture of primary and complimentary living.