Parents Share What It's Like Raising a Child With IBD

Patient Expert

What does it mean to be a parent managing their child's inflammatory bowel disease (IBD)? In the years that followed my diagnosis as a young adult, I don’t think I ever asked my parents what it was like being a parent who doesn’t have IBD caring for a child who has the disease. So, I figured I should ask.

I was diagnosed when I was older, and already off at college, so I felt like I had to tackle things on my own. Little did I know that my mom (Kendal) and dad (Shawn) went through their own trials and tribulations with my diagnosis. They always give me the best care when I come home to visit, and offer a ton of support to me otherwise. But I don’t think it was always easy for them and they were kind of on their own.

I reached out, not only to my parents, but to other parents who have children with IBD to learn more about their experiences and the advice they offer to other parents of kids with IBD.

I’ve included my questions and their answers.

What was the hardest part of your child receiving an IBD diagnosis?

  • “Everything was hard. I wasn’t knowledgeable of the diagnosis, she didn’t see her primary care doctor, and she was living away from home when she got diagnosed.” — Kendal

  • “The hardest part was just not knowing why. Why did this happen and what caused this?” — Shawn

  • “My child was diagnosed in 1988, so there were no computers to find out any information.” — Linda

  • “I felt that it was my fault.” — Ronda

What was the most rewarding part of being a parent to a child with IBD?

  • “Being able to help her through the bad times, because I know exactly how it feels.” — Ronda

  • “Her positive outlook.” — Shawn

  • “In all honesty, learning about IBD.” — Kendal

  • “I think it’s made our family more empathetic about other people with diseases.” — Linda

What’s the most difficult part in raising a child with IBD?

  • “The ups and downs of the disease. All the hospitalizations, IV antibiotics, and TPN (total parenteral nutrition, or liquid nutrition given intravenously, for months on end.” — Linda

  • “Not having the insight I wanted into her disease. Like, did this start when she was a child? Could we have done something sooner?” — Kendal

  • “The most difficult part is not knowing if it will get worse.” — Shawn

What changes did you make, if any, and how did you learn more?

  • “We made some dietary changes. And she realized that when her body tells her that it needs extra rest, she has to try to listen to that.” — Ronda
  • “I ended up going to a CCFA (Crohn’s & Colitis Foundation of America) support group to find more information and talk to adults. We also bought a large TV for the living room, since we watch a lot of movies at home. We tried to plan trips when our child was feeling good.” — Linda

  • “When she visits, I always ask her what I need to get for her and what she can and can’t tolerate. I listened to my daughter talk to me about her diagnosis.” — Kendal

  • “I went to medical websites to learn more about IBD.” — Shawn

What do you say to your kids to encourage them when they’re having a hard time with their IBD?

  • “I just keep reminding her to take care of herself, and that flares improve eventually.” — Ronda

  • “A lot of reading, playing a lot of games. And play! We used to make pretend meals when my child couldn’t eat.” — Linda

  • “I always tell her to never give up. And I encourage her to visit her doctor and specialists. I always tell her that I’m sorry that she has IBD, and that I wish I could help her more.” — Kendal

What advice would you give to other parents who have a child with IBD?

  • “Talk to their doctor. Find out what options are available for them.” — Shawn

  • “Think about past history as a child. Get as much information as you can related to this, and try to understand the happenings of the disease.” —Kendal

  • “Keep asking a lot of questions. Look up information on CCFA sites. Try to take it day by day. It’s a changing disease with many ups and downs. And try to have someone to talk with to vent about everything that’s going on with your child.” — Linda

So, to all you IBD parents out there, you’re not alone. A lot of parents have gone through this experience. I’m so thankful to have learned more about my parents’ experience, and the other parents out there.

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