I’m Chronically Ill With Crohn's Disease, But My Relationship Is Built On A Love Of Food
I’ve lived with Crohn’s disease, a chronic inflammatory bowel disease, for over 10 years now, and I’m still learning how to cope with it, connect with others in the community, and try new methods of treatment. But being in a relationship while chronically ill has been both a challenging and rewarding journey.
The challenges? Well, when I first started dating my now-husband Ryan when I was 25, he told me, "I love that you eat everything." He loved that we could enjoy a steak or cheese and charcuterie board together, and that we could indulge in fluffy breads, pastas, and rich desserts. He meant that because I wasn't picky (perhaps like some of his exes were), our at-home dinner dates were lush and enjoyable.
At this time, Crohn’s disease wasn’t at the forefront of my mind. When I was diagnosed at 17, my doctor said I had it “mildly.” I had some ulcerations and some symptoms (nausea, upset stomach, abdominal pain), but I figured that wasn't much to worry about. I stopped taking Pentasa, the steroid I was prescribed, and told my family that I "felt better," even though I was still experiencing some symptoms. Because the word "mild" sounded like "not a big deal" to me, I pretty much ignored my diagnosis for the next decade.
But as time went on, and my symptoms reared their ugly heads, I had to tell Ryan what was happening. A few months after we started dating, we were walking through my neighborhood, scoping out the pretty houses we imagined we could afford at the time. Nervously, I blurted it out: "I have Crohn's disease," I said. I rambled on about how I had downplayed the severity of my diagnosis partially because I didn't believe I had it that bad myself, and partially because I wanted Ryan to still view me as "normal" — not someone "damaged" who needed special treatment. He just listened.
A few years and three emergency room trips later, doctors realized I needed a major surgery: a resection of my small intestine to remove 12 inches of damaged tissue. This surgery meant cutting vertically into my abdomen, leaving me with a painful recovery, one long scar, and the realization that I needed to seriously re-evaluate my life choices and drastically change my lifestyle, even if that affected my partner. That meant re-thinking and revising the very things thought brought us together: cooking rich, homemade meals, drinking copious amounts of good wine, staying out late with friends, and neglecting exercise in favor binge-watching Netflix.
Immediately after the surgery, I began infusions of Remicade, a biologic aimed at blocking extra TNF-alphas that cause inflammation and damage in people with Crohn’s who have too much of it. I then switched to Humira injections and began to put my body first, revising my diet to exclude dairy and sometimes breads and meats, as well, while beginning to exercise more and focus more on getting a good night's sleep.
That's all easier said than done, though. Ryan is the sweetest, most supportive man I’ve ever known. Every single night I was in the hospital, he slept in a chair alongside my bed. He stayed with me through each four-hour infusion of Remicade. Now, he's actually the one who does my painful but necessary Humira injections every other week, since I'm deathly afraid of needles. Ryan has been a dream throughout my entire medical journey, so of course, I felt guilt knowing I had to turn our lives upside down even further, changing our lifestyle drastically.
It’s hard enough to go about your day-to-day life when your energy is constantly being depleted and you’re not able to absorb proper nutrients due to having Crohn’s. It's simply easier to shop for, prep, and cook, and clean up after one meal instead of two. So, Ryan and I agreed early on that we would eat the same healthy meals together for the sake of my well-being.
But guilt swirled incessantly in my mind: How could I put him through a vegetarian or vegan diet, all the while knowing how much he’s loved being able to indulge in steaks and cheeses with me over the years? How could I change everything we love about our long-standing cooking dates, the fine foods we eat, and the fun of trying out new cocktail bars and vintage bottles of wine? How could I take away the joy of frying bacon on a Sunday morning? How could I replace the ease and comforts in our dining routine with more difficult recipes and new-to-us products like vegan cheese, soy milk, and tofu when I know, in his heart, nothing can ever compare to a prime cut of filet mignon?
My husband, of course, has said he is fine with any lifestyle change I want to try. He tells me, "We will do whatever you need to be healthy." That's all I could want. But I can’t help feeling bad knowing exactly how much he loves experiencing the best food life has to offer with me by his side.
Another challenge is that his metabolism runs fast. He benefits from eating meat and carbs, while those are the some of the very things that can hurt me. Navigating our different dietary needs has been a difficult balancing act. Sometimes, he'll lose too much weight while I begin to get better.
We still struggle with deciding what to eat. It’s definitely hard to make the “right” choices, especially when there isn’t some unified codex or diet of what people with Crohn’s should eat. Everyone has opinions, and they all seem contradictory at times. My gastroenterologist recommends the Mediterranean diet, while an entire Facebook support group with thousands of members is devoted to their bible, a stricter Crohn's diet book calledBreaking the Vicious Cycle. Personally, I keep a food journal and monitor my symptoms to track which foods work best for me.
What's complicated is that Crohn's is a changing, day-to-day struggle. I can eat the same meal one day and be fine, while experiencing horrible symptoms from it another day. This is a lifelong experiment with trial and error.
I still have good days and bad days alike, and we are still figuring it out together. Regardless of what Crohn's throws my way, I feel so fortunate knowing I can depend on Ryan, and that he will be with me, by my side, for better or worse, through all of this.