Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 

I’d like to start by reading a paragraph to you:

“18-year-old male with a history of ulcerative colitis. He has undergone a total colectomy, proctectomy, J-pouch creation, and ileostomy. He had his ileostomy closed 2 days ago. Last night, he developed a fever, abdominal pain, tachycardia and hypotension. He was resuscitated and put in the ICU. He had evidence of free air on his abdominal films and what looked like a high-grade obstruction or ileus. He had been having stools during the day yesterday. After discussing this with his parents, we elected to re-operate on him.”

Those words I just read, were terms and sentences I never imagined, as a mother, I’d hear written about my son. They were written 2 ½ yrs. ago, 2 yrs. into our family’s IBD journey.

How many of you have ever tried to learn a new language? When I was in college, I spent three weeks backpacking around the Greek Islands. I remember being taught a couple Greek words and trying to figure out the Greek language. I quickly realized; I’d never understand the Greek language or Cyrillic alphabet.

Just as I didn’t understand Greek, four years ago, I barely understood any of the IBD language when my son was diagnosed. Now, four years into my son’s diagnosis and journey, I’ve learned a ton of IBD and ICN language. Terms like, proctectomy, Pathway to Mastery, infliximab, C-difficile, TPN, C-Reactive. The list goes on.

I am humbled to have been asked to share a bit of our family’s IBD story and what ImproveCareNow means to me. My husband and I currently live in Atlanta, GA, after having lived all over the US. We have two children, both adopted from Mumbai, India as toddlers. Our son Stephen is 20 years old and is a Graphic Design major at the University of MN at Duluth – think way up north on Lake Superior near the Canadian border. Our daughter is a freshman at Georgia State University in Atlanta.

Our IBD journey started in 2016. I say our journey, as everyone listening knows that when it’s one’s child that gets diagnosed with a chronic illness, the family is affected, and you take the journey together.

Our son Stephen was 16 yrs old when he was diagnosed with ulcerative colitis after becoming very sick with life-threatening diarrhea, while on a backpacking trip, in the California mountains with family. When he and family got off the mountain and got a cell signal, they called me and said, “we’re on the way to the ER with Stephen, he’s been terribly sick on the trip.” We were told, months later by family just how sick he was on that mountain and that he had been hiding his soiled clothing at their house in the days leading up to the trip.

For the past two years I had a “mom’s instinct” that something was not right. He was always in the bathroom. This time my “mom” instinct was strong, and I thought, “this isn’t hiking diarrhea, something is wrong.” We ended up at Children’s Healthcare of Atlanta/GI Care for Kids, which is the ICN center we’ve been with for the past four years. At diagnosis, we learned he had lost 30 lbs in the previous 4 months.

From the beginning we were immediately thrown into a feeling we’d felt before – that from our early international adoption days – one where we had little control or knowledge. The next 18 months were consumed with familiar experiences to many of you. Biologics, our children always feeling fatigued, too many embarrassing moments to count, countless tests, amended 504s, pain, constant steroids and for our family, a surgical consult. By November of his senior year, we were faced with a very life-altering decision.

I should stress Stephen faced this decision at 17 yrs old. He was the first to raise his hand and emphatically say “I want a colectomy.”  He was tired of being so sick. This decision was probably harder for my husband and I to wrap our heads around than it was for him. Everything at that moment felt so surreal. You see, we were dealing with all the other stuff that life presents on top of a chronic illness diagnosis.

Stephen had a colectomy in February of 2018. The surgery went smoothly, and he embraced his new life with an ileostomy that he named Kramer from Seinfeld. Learning to live with an ileostomy was another sharp learning curve for our family. He kept rising to the challenge.

At this point in our journey, I didn’t know about ICN and I wish I had.

This was one stop in our journey, where one of the amazing toolkits that the Patient Advisory Council has produced would have benefited us. We were given no help from anyone leading up to his surgery about ostomies and I thought, that is just wrong. Families need information.

Stephen graduated high school 3 months later and went on to have what is called an ilealanal anastomosis for you clinicians and a J-pouch for us laypeople, created. We like to explain it to people as a new mini-colon made from his lower small intestines. It was a more involved surgery than the colectomy and where we started meeting complications after surgery. Blockages, ER visits at 1am, needing morphine for the pain. Stephen started regretting his decision to get a J-pouch, as this was an optional surgery for him. He never regretted his colectomy decision. Later in the summer he had the last of the 3 step surgeries to close his ileostomy, called a takedown.

The surgical passage I read at the beginning of my speech was about the last of my son’s four surgeries. It was an emergency open abdominal exploratory surgery, done just 36 hrs after his last surgery. Please stop and ponder that. After battling UC for the past two years, he had his 3rd surgery in 6 months and 36 hrs. later was sent to the ICU to get stabilized and then rushed back into surgery. It is what changed our journey with a colectomy and a J-pouch for his UC into something that presented our family with our greatest IBD challenges and gave me my “why” for getting involved with ImproveCareNow. Stephen spent a week in the ICU and ended up having to defer his freshman semester of college. PTSD started to present itself for all of us. I do want to stress to all parents and patients listening to me, that this was simply my son’s experience and that needing his emergency surgery is not the norm.

This was my WHY and WHEN for getting involved with ICN. I knew once I got my first response from a Parent Working Group member that I wanted to get more involved. Stephen was also contacted by our local ICN family advisory council to talk to some other struggling teens. Stephen’s GI and surgeon always said he was one of their most positive and inspiring patients. I immediately started logging into the monthly parent working group meetings.

I immediately knew this organization wanted to hear my voice; wanted to hear my son’s voice.

They were made up of people all around the world, who wanted and valued what I did. To help other pediatric families by sharing our past and present experiences. That our personal experiences were real and mattered. ICN values learning from our successes and failures. This phrase has been used a lot within ICN, but it never loses its impact, “These are my people.”

I’d like to close with how ImproveCareNow can help your family and where you can get involved

💚 The Parent Working Group or PWG is a great resource for parents to connect and know they are not alone. We’re a bit like a PTA board, we always need willing and able bodies, no matter how little time or much time you have. We have meetings several times a year with guest speakers, learning opportunities about ICN and IBD in general and ideas from other centers. Since joining ICN, I’ve been able to lend my voice to my local Family Advisory Council. I’ve attended community conferences. I’ve made new friends. We are a group of parents that want to advocate for all children and support each other.

💙 The Patient Advisory Council or PAC is a great resource and place for your child’s voice to be heard, have their own support network, and empower your teen/young adult as they navigate their disease.

💚 Know that ICN values mental health support. A topic that is so important, even before this pandemic. Seek it earlier than later, for both you and your child if needed. If you’re a clinician, Please REMEMBER that the TRAUMA is real. An IBD journey does not have to be traumatic in events, such as ours, to be serious and take a toll on a family. A patient doesn’t have to have had surgery or lived with a feeding tube to be traumatized. A simple diagnosis can be traumatizing for some.

💙 If your Care Center does not have an entity such as a family advisory council – reach out to ImproveCareNow for guidance in starting one.

Through all the heartache at times and watching my child suffer, my family and I have also gained amazing experiences from our IBD journey.

Something negative has turned into something positive for our family, with the help of ImproveCareNow.

We’ve watched our son continue to grow into the amazing young man he is becoming. He is currently in a good phase with his health journey. Do we still worry? Yes, we do. We worry about blockages, scar tissue, a Crohn’s diagnosis, pouchitis, pouch failure etc. Do these things consume us?  No, they do not. We like to say that IBD is the disease that keeps giving.

For now, Stephen is in college. He’s doing great and doing all the things he loves: fishing, art, traveling, eating Indian food and living in MN.


Get #InTheLOOP with more Ignite Talks >>

Learn more about Parent Working Group at improvecarenow.org/connecting-parents

Learn more about the Patient Advisory Council at improvecarenow.org/patients

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