Meet Trish, Parent and Caregiver
Published: May 12, 2022
Local chapter parent, Trish answers questions about managing her life as a caregiver of a child with IBD
You have a child with IBD. Can you share more?
Our son was 9 years old when diagnosed with both ulcerative colitis and celiac disease in 2020. He’s now 10 years old. Due to his bowel symptoms, the Pediatric GI team admitted him to the hospital and began IV steroids. Upon discharge, they weaned him off an oral prednisone and started an anti-inflammatory drug. Unfortunately, his colitis flare-up returned after stopping the prednisone. They replaced the anti-inflammatory with a corticosteroid which didn’t help. He landed in the hospital again back on IV steroids. The GI team wanted to try a biologic. To increase the therapeutic benefit of the biologic, they added an immunosuppressant. He also needed a blood infusion. It was a lot to deal with — for him and us. Finally, after many weeks, we saw improvement. The GI team felt confident to stop the immunosuppressant a few months ago. Our son currently remains in remission on a biologic.
What has been most challenging for you?
Our son kept saying he wanted to go back to his old life. This was hard to hear as parents. It was challenging at first finding out how to eat gluten-free for the celiac disease while managing the colitis. Another struggle was getting him to take his pills. He had trouble swallowing them. But we had to make sure he got them down. The hospital Pediatric staff helped him to swallow pills when inpatient. At home we found what worked best too.
Have you connected with other parents who can relate?
Yes. Ironically, we are friends with a couple whose child has ulcerative colitis. They’ve been such a source of support. I also joined online groups to connect with parents who had children with colitis and celiac. The posts and comments are helpful.
Any advice for parents with a child newly diagnosed with IBD?
Find a doctor you connect with and who has empathy and compassion. You want someone who understands your concerns and treats your child like their own. We’re lucky to have a great Pediatric GI team with a full range of complimentary resources for parents and patients.
As parents, working with a therapist is helpful to talk through our fears and worries. They guide us and help our mindsets. Therapy keeps you grounded, especially when you’re in survival mode. You need to understand that your child might not be fixed in a short time. It can take longer in some cases. Everyone is different. It’s okay to validate your feelings. Allow time to process what emotions you’re feeling and work through them. Focus on the current situation. Constantly worrying into the future is a distraction from enjoying the present moment.
Teach and guide your child to advocate for themselves. Surround yourself with people who “get it” and those who are supportive of you and your child and accept the situation. Learn as much as you can from your GI team and the Crohn’s and Colitis Foundation. Regularly attending a monthly support group helps me. I also write to my state representatives and senators for CALL TO ACTION items that I hear about through the Foundation.
What have you and your husband learned in this journey?
We learned how chronic illness came into play and flipped us upside down and around. It was lucky that my husband and I have been on the same page about treatment and how to get our son better. Therapy helped us communicate better about the situation. We also realized that both of us need to be there for our son.
For example, we manage our son’s medical needs in shifts, when one of us meets in-person with doctors, we put the other on speaker phone. We keep a notebook for appointments and calls. We figured out what gives our son comfort during his IV drug infusions, what tricks make it easier for him to take pills, and how to help him stick to a gluten-free diet and enjoy what he’s eating. Therapy helped us bring down his anxiety levels.
What positive changes have you seen in your son?
We’ve seen a lot of growth and inner strength in him. When he saw the medical treatment helping his symptoms, he became more accepting about his new normal. He’s taken more control in managing his diseases and speaking up for himself.
Does he participate in extracurricular activities?
Yes! He plays baseball and has done karate for almost 5 years. He earned his black belt last December. This year he joined the school band. He also graduated from being a Cub Scout to Boy Scout. We appreciate how much he’s able to do again!
Disclaimer: The IBD medications mentioned are for purposes of this article only. Every patient’s experience and care is unique.