Tips for Parents of Kids With Ulcerative Colitisby Mandy Patterson Patient Expert
When I received my ulcerative colitis diagnosis in my early 20s, I could have never imagined the immense guilt my parents would feel. They endlessly questioned themselves, swearing they must have done something to cause my chronic illness.
Years have passed, and I’ve learned to manage my UC—and while my parents still haven't shaken that guilt, they've learned a great deal about my condition and come a long way in finding peace with this new normal. Based on our experience as a family, I've put together a list of tips and tricks to help you, as a parent, handle the guilt and become an advocate for your child with UC.
Get Educated About UC
First and foremost, learn as much as you can about your child's condition. Look to reliable sources of information, like the Crohn's & Colitis Foundation (CCF), or read other helpful articles about UC management here on HealthCentral. It's critical that you completely understand what this disease is and how it affects the body. Learning about UC can help you better understand the symptoms your child is going through, and therefore support them and advocate for them more effectively.
Research Treatment Options
It's important that you understand the types of treatment available to your child—that way, you can help them make decisions about their care. Make sure you're familiar with mesalamine, biologics, and steroids like Prednisone. If you take the time to research these medications with your child, you’ll know what to expect in terms of side effects and how to judge if the treatment is effective.
Join a Support Group for Parents
While your child may be eager to join a support group for themselves, you should also consider joining a support group for UC or IBD parents. You can find support groups through a local hospital, the CCF, and even Facebook forums. These can be great outlets to connect with other parents who understand what you're going through and can help ease some of the burdens that come with caring for a chronically ill child.
Find New Ways to Support Your Child
After your child receives their UC diagnosis, supporting them may take on new meaning. Perhaps your old go-tos to cheer up your child are no longer working, thanks to the added struggles of living with a chronic disease. That’s why it’s important to take part in your child's new normal—whether that's letting them sleep in for a few hours (fatigue is a common symptom of UC) or preparing them UC-friendly snacks, you'll need to discover new ways to give them the support they need. It could even be something as simple as celebrating a small win, like making it through a whole day of school.
Educate Family and Friends About UC
One thing that can be difficult for your child is finding the words to share information to friends and family members about UC. Many times, it's not something your child wants to disclose because of some of the embarrassing symptoms of the disease. You can make a huge difference to your child by educating your family and friends about their UC on their behalf—in a sensitive, discreet way. By providing accurate information to your friends and family and putting boundaries in place, you can save your child a lot of uncomfortable experiences, like being told by grandma how to handle their disease.
Attend Doctor’s Visits With Your Child, Even When They’re Older
Whether your child is 5, 15, or 25, it can help your relationship and understanding of UC to attend gastroenterologist (GI) visits together. During this time, you have direct access to their GI, and you can ask questions and get answers. It also may boost your child’s confidence to have you in the room with them to ask some of the more difficult questions. It also gives you a chance to advocate for your child if you both aren't receiving the answers or information you want. If your child is older, just make sure you get their OK before diving into the conversation on their behalf.
Listen to What Your Child Needs
I can't stress this enough: By listening to what your child says they need, you can alleviate much of the stress and guilt they may be feeling. Their needs are going to drastically change after UC diagnosis, and some days, they may just need to be left alone, or maybe they need more time to rest. Other days, they may require more help from you in terms of advocacy, or they may just want a shoulder to lean on. The best advice I can offer is simple: Ask your child, "What do you need from me today?"
Know That You’re Doing Your Best
Never forget this: UC can be unpredictable for you and your child. Some days will be great; others might be terrible. Don't ever feel like you're not doing enough or that you’re not good enough at assisting your child through this diagnosis. There will be times when you fight, times when you can't solve a problem for them, and times when you will be just as worn down as they are. That's OK. You both are going to learn to get through it together.
You’re Still Their Hero
Parents, take it from me as a UC patient: You are still our heroes. You didn't do anything wrong to cause this disease—you played no hand in it. The best thing you can do is to continue being our biggest supporter, advocate, and friend. Know this is a new journey for you to embark on with your child, and like everything else in life, it's going to throw some curveballs your way—but there are plenty of tools and resources out there to help you catch those curveballs and win the game. Thank you for all you do as a UC parent.