A Daughter With Crohn’s Interviews Her Mom

When a loved one is diagnosed with a chronic illness like inflammatory bowel disease (IBD), the journey presents unique experiences for both the patient and their loved ones. When I was diagnosed with Crohn’s disease (a type of IBD) at age 21, my mom was by my side every step of the way. Even though I am older with a family of my own now, my mom continues to offer support anytime health challenges arise.

I asked my mom, Diane Sparacio, to reflect on the 20-year IBD journey she has taken with me and to share what she’s learned along the way.

You’re a nurse. As a medical professional, what were your thoughts when my health began to go awry in May 2005, shortly after college graduation?

Diane Sparacio: When your health started going awry, I began to get quite concerned and worried. It was easy to see, in just a short time, you were not yourself. You were experiencing bouts of fevers, stomach pain, weight loss, lethargy, and changes in your typical routine. In the back of my mind, I thought you could have an undiagnosed illness, such as cancer.

How did it feel—from a mom/caregiver perspective—the night I was admitted to the hospital after being told I had Crohn’s disease in the emergency room?

DS: I had many feelings that night in the emergency room. In some ways, I felt a sense of relief knowing the cause of your symptoms. I also was pretty shocked because we have no family history on either side of anyone having Crohn’s disease. I didn’t know very much about Crohn’s at all back then, but what I did know made me feel very sad.

At the time, I worried you would have a life that may cause you to have many hospitalizations and possibly need an ostomy one day. You were just 21; you looked so ill and frail. I thought, “What just happened to my girl who was always smiling, positive, and full of life?”

Now that I’m coming up on 20 years since my diagnosis, what advice do you have for caregivers who are worried about their kids/teens/young adults being given this diagnosis and being able to live a full life?

DS: My advice would be to stay hopeful and optimistic. Your child/young adult will, in most cases, become so in tune with their body throughout their journey. You will witness them navigating the ups and downs with a sense of strength. I feel it is important to always be there for them no matter what—even if they are a grown adult. 

I also suggest to not fear if the need for surgical intervention arises. Surgery was always my biggest fear, yet when you did require surgery, it was the best solution and outcome for you. 

I also would not fear if medication needs to be changed. The biologic class of drugs always worried me because of any potential side effects they may have, but I have learned their benefits outweigh the risks. 

Since being diagnosed with Crohn’s, I’ve lived in Minnesota, Wisconsin, central Illinois, and St. Louis. During the last 10-plus years I’ve lived far away from you and our Chicago suburb hometown, how does it feel when you’re away from me and you get a call I’m headed to the hospital or that I’m having a symptomatic day?

DS: You have lived away from home for so many years now and in many different states since being diagnosed. But one thing will never change when I hear you’re headed to the hospital or having a symptomatic day… I feel helpless! 

I always want to be by your side to offer any comfort I can. I also want to see things for myself in a hospital setting. When you have symptoms, I worry that things may escalate quickly. I pray a lot. 

I especially worry now that it’s just not about you anymore. You are now responsible for three young children, so this adds extra stress and always a deep sense of sadness that we don’t live near each other.

What are some of the challenges or emotions you’ve dealt with, knowing that I live with a chronic illness that’s as unpredictable and complicated as IBD?

DS: Some challenges or emotions I have dealt with, knowing you live life with this chronic illness, are mainly the worry and uncertainty of having pain or a flare on any given day. It has always been daunting to know that IBD is chronic, and at this time, no cure is in sight. It is hard to see or hear you are in pain, but witnessing you still finding the need and ability to go about your day and responsibilities.

Any other thoughts you want to share?

DS: This July 2025, you are coming up on 20 years since the night you were diagnosed in the emergency room. I wish I knew that night what I know today. I have learned so much about IBD. But most importantly, I am beyond encouraged to learn of all the new medications now available, amazing ongoing research, and knowledgeable and caring gastrointestinal (GI) doctors that are around. 

I am forever grateful, inspired, and so proud of how you faced your IBD diagnosis head-on. Initially, for a decade, you kept it so quiet. But then you found your purpose and your voice. And with that, you are enlightening, encouraging, and showing others that living with a chronic illness—as you say on your blog—“doesn’t have to dull your sparkle.”