IGNITE - Creating a Family

Do you need an IBD family? Martha knew instinctively that she did, from the moment her family first started their journey with Crohn's disease. So, she volunteered to start a pediatric family support group at her local care center. It took some time for the group to gain traction - nine months, in fact. But thanks to Martha's "pleasant persistence" and the active involvement of their pediatric GI provider, the group is now thriving - supporting and encouraging each other (both the parents and the kids), working side-by-side with patients and providers to better care, and offering newly diagnosed families a safe and welcoming place to find their footing surrounded by people who truly understand. As Martha puts it, "I had no idea who I would meet or how we would all interact, but I knew that if I needed an IBD family, others did, too."

Be inspired by Martha's #IgniteTalk 🔥 

On Tuesday, February 6th, 2018, I picked up my kids from school. My daughter, Avery, was 9 years old and very excited about her birthday the next day. She was ready for double digits! Xander, my son, was 11 and his birthday was a few days later, on Sunday. Avery excitedly talked about her birthday, but Xander complained of a tummy ache.

Another tummy ache.

He had tummy aches all the time. And was in the bathroom all the time. I had talked to his pediatrician about all the bathroom visits and I had even gotten him started with a counselor because I thought he just had nervous tummy.

But he said this tummy ache was a little different. There was an extra sharp pain in the bottom right side of his stomach. I called up my parents. They’re pharmacists; so they are a very important part of my medical team. They told me to try the usual checks for appendicitis. Nope. That didn’t seem to be it.

Later that afternoon, I got a text from Xander…from his bedroom to me, on the couch. It said, “Can you please come here? I’m really hurting.”

I found him curled up into a tight little ball on his bed and crying in pain. We headed to the nearest urgent care for what I hoped was going to be a quick visit with an easy answer. It wasn’t. The doctor there told us that they couldn’t really diagnose abdominal pain like Xander was describing.

So we were referred to the nearest emergency room. After waiting in the waiting room for over an hour, we saw a doctor. He was concerned about kidney stones or appendicitis. Eventually, Xander had a CT scan which showed inflammation in his ileum and a possible fistula in his bladder. That was the first time I had heard those words, or the words “Crohn’s Disease.” We were sent to OU Children’s Hospital – by ambulance. As the transporters pushed Xander’s hospital bed to the ambulance, they chatted. Xander wasn’t in pain anymore. He was just tired and worried. But he was still his usual happy self. At one point, the transporter said, “I mean, won’t it be fun to ride in an ambulance?? WHO gets to ride in an ambulance?” And with a perfectly straight face, Xander said, “A sick person.”

The next 16 hours in the Children’s Emergency Department included tests, scans, doctors, information and restless sleep. Did I mention that the flu was sweeping through the nation and the hospitals were full?

I had no idea what Crohn’s was. My mom had to look it up just to make sure she had the information right. I didn’t know anyone else with this disease, but at least we had an answer for all his tummy aches, the handful of accidents at school, and why he was always in the bathroom.

We have a great support system in our family and friends and they helped us get through the next few days in the hospital. My daughter turned 10 and we tried to make that day as focused on her as we could. Xander was discharged from the hospital the day before his 12^th birthday.

During that time in the hospital, I began to look for support groups that could help us with, what I was learning, was going to be a lifetime journey.  Even with 100+ kids as patients in the pediatric IBD clinic at our children’s hospital, there was no child or family support group. I knew this was going to be important to us. I thrive on family relationships – both our extended family and the family we choose. But not too many within these families had direct knowledge of Crohn’s.

Only a few weeks after that first hospital visit, I volunteered to start a pediatric family support group.

The group started very slowly. Our first meeting was on an evening when it was pouring down rain. I’m so thankful for that one family and a GI we knew from our first ER visit who braved the waters to be there. And then, no one came for the next several months. Xander and I continued on – pleasantly persistent, my friends call me. Nine months after that first meeting, a dad came to the meeting. You would have thought the room was filled with people with how excited I was! About a year after I started the group, we changed GI’s because ours was moving away. 

Dr. Tung, our new GI, was all in for helping us get the support group started. She would share information about the group to each one of her patients as they came in for appointments. She planned education conferences where I was able to meet more IBD families.

In early March, 2020, we held a smoothie night for the clinic’s patients and others I had been in contact with through the support group. In the midst of IBD nutrition talk, whirring blenders, and frozen fruit, three moms and their boys met and formed an immediate bond. These boys and their moms needed – and found - their IBD family. In fact, these three young men were recognized last weekend as our local Honored Heroes at the Oklahoma Take Steps Walk.

A month ago, we held a virtual meeting and along with my friends, my IBD mom friends, we had a new mom and her son join us. Their family was brand new to this journey. You could see the relief on that new mom’s face as she looked at the rest of us on the computer screen; a group of people who absolutely understood what her little boy was going through. This is why I volunteered to gather these families. I had no idea who I would meet or how we would all interact, but I knew that if I needed an IBD family, others did, too.

Do you need an IBD family? Thankfully, you can find them right here!

The Patient Advisory Council is made up of some incredible young adults who are learning how to advocate for themselves and for others. If you are a young patient, I encourage you to get involved with this group. Not only will you be able to share your experiences and raise awareness of IBD, but you will become a part of a great IBD family.

And parents, this is your invitation to become involved in the Parent Working Group! You will find parents who are committed to improving the lives of IBD patients and families. We work side-by-side with the patients and doctors to better care for these kids.

Clinicians, if you don’t have a Family Advisory Council at your care center, contact ICN to find out how to start one. I have no doubt that there is a family - or two - who would benefit from finding and creating their own IBD family.

Thank you, everyone!

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Want more 🔥 Ignite? Read all Ignite Talks from patients, parents & clinicians.

Join Martha and the PWG - parents & guardians of young people living with IBD are invited to learn more & connect at improvecarenow.org/connecting-parents

Feeling like it's time to take action? No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to save the date to attend our December 8 Virtual Community Conference (this free, web-based event is a great way to learn more about ICN from the patient & parent perspective)
  

• Invite someone to stay #InTheLOOP with our stories on the blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint (We will be posting 3 more #IgniteTalks - like John's - to the blog over the next couple weeks. By signing up, you'll be the first to know!)

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie

• Invite someone to download our free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)