If you read the last blog post, you’re familiar with Bryce’s story. In the previous post, Bryce was interviewed for his perspective on growing up with a sibling diagnosed with IBD. He actually has two sisters with Crohn’s disease, and one of them was diagnosed at a very young age. Because of this, IBD was considered to be a normal, consistent part of his childhood from the time he was six years old. Some of the topics that were discussed in his interview include: the impact IBD had on his sibling and parent relationships, how IBD affected his family’s day-to-day activities, and the overall culture of his home during periods of high stress. If you would like to read his interview, you can click the link at the bottom of this page. For this blog post, we will be continuing our discussion on the impact IBD can have on family life. This time, however, Bryce’s mother Lisa will be the one answering the questions! Lisa Fournier is the founder of IBD Connect Inc. She is the mother of two children diagnosed with Crohn’s disease, one diagnosed at the age of four, the other diagnosed at age twenty-eight. Whereas Bryce provided his unique insight as a sibling to a diagnosed child, in this interview, Lisa provides insight into her perspective as a mother. She also discusses how she came to create and expand IBD Connect. This is an interview you will not want to miss! Let’s dive in.
Can you please introduce yourself? Give us a little bit of background about who you are!
So, my name is Lisa Fournier, formerly Lisa Lataille. I grew up in Woonsocket, RI, the 4th child of a family of 5. I graduated from Rivier College in Nashua, NH, moved to Las Vegas, NV for a bit and then settled in Uxbridge, MA. I am the proud mother of 4 amazing children (5 with our adult adoptee) and have 5 grandchildren. Family is the very center of my life and I love spending time with all of them. I work as an accountant/operations manager and in my spare time, I work with families through IBD Connect.
Why did you decide to start a nonprofit organization for IBD? How did IBD Connect begin? Why did you choose the name IBD Connect Inc.?
Going through life with a child living with Crohn’s Disease is a very difficult journey, for the patient and for the entire family as well. I had searched for a support group for my daughter Randi when she was about 14 years old. She had been diagnosed with Crohn’s Disease at the age of 4 and was struggling with social interactions. Children did not understand what IBD is or how it impacted a life. She often felt different from the other kids and I wanted her to be able to connect with others who were on the same path. I could not find a local support group so I decided to start one. It became extremely successful and I thought about how many other ways I could begin to help families living with IBD. I also discovered that the families were bonding beyond the meetings and the connections were becoming a vital part of a patient’s family life. Everyone truly understood what the others were going through. I decided to start IBD Connect so that I could expand the manners in which I was serving the IBD community. I struggled with so many issues along the way with my own journey with Randi that I thought it could benefit other families to have the information and resources that I did not. I did a bit of research about starting a non-profit and decided to jump in. It has been an amazing journey, not without bumps in the road and mistakes, but amazing nonetheless. The name IBD Connect stems from what was the most important to me along the way, which are the connections that I made. To have a person you can turn to who understands your particular role in this journey is a priceless connection.
Let’s talk about being a parent to a child with IBD and take a trip down memory lane. Can you briefly share your journey of discovering that Randi has IBD? How did you feel during the initial diagnosis process? What were your immediate concerns and fears?
Randi began her struggles with IBD at a very young age. She had issues with bowel movements from the time she was a toddler. When she was about 4 years old, she would have frequent bouts with bloody stools and awful cramping. The bloody stools were not just a few drops of blood, she would often fill the entire toilet with blood. It was extremely scary to say the least. Her pediatrician recommended a pediatric GI and our journey began. She had her first colonoscopy at the age of 4. It took a while to get a firm diagnosis as she was so young and there were not too many cases of children her age being diagnosed. I was terrified because some of the other illnesses that they questioned were life threatening. Once we received her diagnosis, it took a while for the concept that it was chronic to sink in. My initial reaction was to want to give her medication to “cure” her. Since it is 21 years later, I think we all know how that turned out!
How did your family as a whole react emotionally when you received the diagnosis of IBD?
It was difficult for everyone to understand not only the “what” of IBD but the “why” of it as well. Bryce, who is only a couple years older than Randi, was too young to really understand, but Nick and Jaimee, who were older children at the time, understood. They were so amazingly helpful and empathetic. I think they were scared for her as this was definitely unchartered territory for all of us.
Randi was diagnosed with IBD at such a young age. You also had three older children to care for. How did you navigate balancing the needs of your child with IBD with the needs of your three other children? Do you have any practical tips for parents who may feel as though they are constantly juggling with this tension? How did you maintain a sense of normalcy and fairness within the household?
This is probably the most difficult part of a child with an illness. Although my other children were wonderful about it, the parental guilt of not giving everyone equal attention is really hard. There were times I remember angry moments from them when things had to change or be limited by what Randi could do. Everything seemed to be planned around her needs, and there is definitely a resentment that happens with that. I did try to give one on one time with each child when I could, even if it was just a pizza date or a trip to the store together. There really isn’t a total fairness with regard to time, no matter how hard you try. I do remember telling them all that if it was one of them, I would be doing the exact same thing for them. It had nothing to do with it being Randi, it had to do with trying to maneuver this illness. Being honest really helps. Although the others may not have always liked it, I did my best to help them understand.
Parenting a child with a chronic illness can be emotionally taxing. What self-care strategies did you, or do you, practice to ensure your own well-being and mental health?
Good question. I don’t think I focused enough on this. I feel like I spent so many years in survival mode. There were so many nights that I would just go to bed so exhausted and glad to be successfully through another day. It definitely takes a toll on your own personal well-being as a parent and an individual. What did help my mental health was the fact that the support group families were so amazing. Being able to share the journey with other parents in the same situation keeps you sane.
Could you share some of the biggest challenges you've faced as a parent of a child with IBD? How have you overcome these challenges or adapt to them?
There are so many facets of challenges for parents of a child with IBD. There are physical challenges, emotional challenges, financial challenges. The physical challenge ends when they take over their own health care as adults. The unending trips to the doctor, hospital, etc become their challenge at that point. The same can be said for the financial challenge. When they learn to maneuver the insurance and expenses, those become their challenges. The emotional challenge never goes away. When Jaimee was diagnosed at 28 years old, I had that same emotional reaction as I did when Randi was diagnosed at 4. It truly comes from loving them so much and not wanting to see them ill. It is a process to learn to let go of part of that. I still have moments when I want them to come home so I can cook the foods that I know soothe their body and soul. But they are adults and I relish seeing them continue their care.
Can you share some heartwarming or positive moments that have emerged from your experience as a parent of a child with IBD? How has this journey brought your family closer or taught you valuable life lessons?
There is so much positivity that can come from my situation. First, my family is amazingly close. We know how much we value each other and that is truly a blessing. Having to depend on each other is not necessarily a bad thing. It taught us resiliency, how to make the best of situations, and how to be flexible when we had to. Our family never hid the illness, we chose to make the best of it by advocating and raising awareness. We have met so many wonderful people along this journey and for that, we are all grateful.
For parents who are new to the journey of raising a child with IBD, what advice or words of encouragement would you offer based on your own experiences?
First and foremost, I would encourage them to try to take it one day at a time. Each day is different and you need to learn to celebrate the small wins. It is an up and down path, some periods of time are easier than others. If you are struggling with a portion of it, reach out to another parent, family member or someone familiar with the illness. There is help out there, but you have to seek it. Most importantly, don’t let a diagnosis ever stop your child from achieving their goals. Accommodations may help, excuses do not. The path may be different than either of you planned, but it is always achievable.
Finally, what is your ultimate goal for IBD Connect? What do you see for the future of this nonprofit organization? What would you like people to know about IBD Connect?
My goal for IBD Connect is to continue to reach families all over the country and help them maneuver this journey. Whether it be through a support group, a financial resource, or even a connection that forms a bond, we have something to help. I would like to expand some of the financial programs so that more families can take advantage of them and reach out into more hospitals with our products and services. IBD Connect is my way of serving the IBD community by ensuring that “no IBD patient ever feels alone.”
This concludes our interview with Lisa. It is my hope that her honest, raw answers are able to give you some comfort and hope as you navigate your own family’s unique IBD journey. If you are looking for more information or would like to receive support, please feel free to contact me or another member of the IBD Connect team. My email is linked at the bottom of this page. Additionally, even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge thank you to IBD Connect’s founder for her willingness to participate in this interview! Lisa’s empathy, compassion, and drive are what has grown IBD Connect to be able to serve over seventy families in several different states. She truly wants you and your family to feel loved and supported in this journey. On that note, stay strong IBD Warriors/IBD Warrior families!
Perhaps you are a parent to multiple children, one with IBD, and you are wondering how your child’s IBD diagnosis will impact your family unit. How will the diagnosis impact your family’s culture, values, or day-to-day activities? How will your child’s IBD diagnosis impact sibling relationships? Or individual parent-child relationships? How will you know which child may need your attention the most in any given moment? The answers to these questions are different for every family because every family is different! However, it may be beneficial to gather resources or hear from other individuals in similar situations to help guide you to making informed, intentional decisions for your family. On this page, you will find an interview I completed with my husband, Bryce Fournier. Bryce has two sisters with Crohn’s disease, and one of them was diagnosed at a very young age. In this interview, Bryce gives some insight into his experience growing up as a sibling of an IBD patient. Even if you are unable to directly apply anything you may read in this interview to your unique family situation, it is my hope that you are still able to take some comfort from Bryce’s words. Family relationships can still thrive with an IBD diagnosis! Please, enjoy the interview.
Can you please introduce yourself? Give us a little background about who you are and your connection to IBD Connect!
Sure. My name is Bryce, and I have close ties to IBD Connect through my family. I'm the son of Lisa, the founder and president of IBD Connect, and I'm married to Emily, IBD Connect’s blog writer and media director. My hobbies include working out, spending time with my family, and reading about theology. In my professional life, I'm a behavior analyst working in special education with children who have autism in a public school setting.
Can you please tell us a little more about your relationship with your siblings? Overall, what did your childhood look like?
Of course, I'd be happy to share more about my relationship with my siblings and my childhood experiences. I come from a family of four siblings: an older brother named Nick, an older sister named Jaimee, and a younger sister named Randi. Both of my sisters have been diagnosed with Crohn’s disease. Looking back on my childhood, I have fond memories of spending quality time with my siblings, particularly with Randi. Because my older siblings Nick and Jaimee are considerably older, being 9 and 7 years older respectively, I often hung out with Randi, who is just 2 years younger than me. We frequently had friends over and enjoyed each other's company. Randi's diagnosis occurred while we were both still very young, so her journey with IBD was always a part of our family's narrative. Jaimee, on the other hand, was diagnosed as an adult, well after we had all moved out of our parents' home.
Randi was diagnosed with Crohn’s disease when you were both very young. Do you remember a specific moment in which you first learned about her diagnosis? What were your thoughts and feelings at this time? How did your family handle the news overall? If you don’t remember a specific moment in time, do you remember the general culture of the home around the time of Randi’s diagnosis?
As you mentioned, Randi's diagnosis with Crohn’s disease came about when we were both quite young. I believe I was around six years old when Randi officially started her journey with IBD. While I can't recall an exact moment when I was told about her diagnosis, I do recall that there was an overall sense of stress and tension within our home around that time. I could definitely sense that something was wrong. I remember that each of our family members tried to work through the hurt and the confusion of the shocking diagnosis in their own way. My mom, Lisa, immersed herself in researching and studying the medical literature related to IBD. She was frequently communicating with medical staff at doctor’s offices and hospitals. My dad, Clay, was more inclined to research holistic and natural remedies for Crohn’s disease, exploring alternative treatment options. Because I was so young, I really don’t remember a time in which Randi didn’t have Crohn’s disease. I never thought of her as different or frail. To me, Randi was just my sister! I knew that Randi needed the bathroom more frequently and that she was frequently fatigued and not feeling well.
What kind of support did you and your family provide to Randi during flare-ups or challenging times? How did this affect your own experiences?
When Randi experienced flare-ups, I recall her requiring a considerable amount of attention from my parents. My parents remained dedicated to managing her medications, arranging doctor's appointments, making hospital visits, and monitoring her restroom needs. Even during periods of remission, we were vigilant about locating nearby bathrooms wherever we went, prioritizing this aspect. Our outings were strategically planned around meal and medication schedules to proactively address and alleviate potential flare-ups.
Were there any specific moments or experiences that stand out to you as particularly challenging or significant while growing up with a sibling with IBD?
Of course! As a child, I was never particularly needy for attention. Generally speaking, I was content playing individually or entertaining myself with toys or activities. That being said, I sometimes did feel as though Randi seemed to be the center of my parents’ attention. These moments were more palpable during flare-ups, extensive hospital trips, or periods in which Randi was feeling especially fatigued/ill. As an adult, I now understand that my parents needed to prioritize Randi’s medical needs during these times. I understood that as a child to some extent as well, and I did recognize that my parents genuinely tried to balance Randi’s needs with my needs. That did not make it any less difficult as a small child, however. I also feel as though I had trouble comprehending the true extent of Randi’s medical needs, especially during flare-ups. I sometimes struggled with rearranging our schedule or changing plans due to the unpredictable nature of Crohn’s disease.
How did you manage to balance your own needs and emotions with the demands of supporting Randi’s health and well-being? Did you ever feel any jealousy or resentment towards the attention Randi received due to IBD?
Managing my personal needs and emotions alongside supporting Randi's health and well-being required a delicate balance. There were moments where I grappled with feelings of resentment, as I previously mentioned. Nevertheless, I wasn't overly preoccupied with seeking attention during my childhood. My parents skillfully ensured that even when Randi was hospitalized or feeling unwell, one of them would be available to spend time with me and provide the necessary attention. Additionally, my older siblings, particularly my sister, played a significant role in entertaining and engaging with me while I was young.
Were there any misconceptions or misunderstandings about IBD that you encountered while interacting with friends, peers, or others outside your family? How did you handle these situations?
When interacting with friends, peers, or others outside my family, misconceptions about IBD did arise. Not among my friends, but I distinctly remember encounters where other individuals outside our family believed that adopting a new dietary trend could miraculously resolve Randi's challenges, or they trivialized the gravity of her Crohn's by simplifying it as a mere bathroom concern. I didn't handle these instances directly as a child, as one of my parents would usually step in. If I were to address them now, I'd aim to strike a balance between rectifying these misunderstandings and maintaining a positive, informative tone. I recognize that people generally mean well, yet there's a need to educate about the reality of IBD. I might suggest referring them to resources like IBD Connect and Emily's Gut Check for accurate information. While I was growing up, I never felt as though there was any tension or stress about IBD with my friendships. Both Randi’s friends and my friends were at our house often. I feel as though they absorbed a lot of information about IBD just by being immersed in our home. Because Randi was diagnosed at such a young age, both of our friends grew up with a pretty accurate understanding of IBD from a young age. We never tried to hide anything about IBD from our friends, and we would answer any questions they may have had openly and honestly.
Overall, how do you feel as though Randi’s diagnosis impacted your childhood experience? Did you experience any stress or anxiety related to Randi’s condition?
Reflecting on my childhood, Randi's diagnosis did impact my experiences. The urgency to locate restrooms whenever we ventured out and the tension during flare-ups or unfamiliar outings stand out as sources of stress. Despite this, I don't believe I missed out on childhood pursuits due to Randi's IBD. Our parents made considerable efforts to ensure both of us had fulfilling experiences. Early on especially, the stress was palpable but manageable for our family.
In what ways has Randi’s, and now Jaimee’s, resilience and strength in facing IBD influenced or inspired you?
It has inspired me to be an advocate for those suffering from illness or disability. I feel as though much of the reason I am drawn to working with children with autism and advocating for them is because I saw my parents doing this with Randi and her IBD. Her experiences, especially with all the misconceptions and stigmas about the disease, highlight the need to advocate to spread accurate information, reduce stigmas, and provide support to those suffering. Seeing her do this, as well as my mom through IBD Connect, has definitely left its mark on me.
What advice would you give to other siblings who are currently navigating similar challenges with a sibling diagnosis of IBD? What advice would you give to parents of multiple children, one child having a diagnosis of IBD?
To fellow siblings navigating the challenges of a sibling's IBD diagnosis, I'd advise them to educate themselves about the condition. This knowledge will enable them to offer effective support and foster greater empathy. Listening, communicating, and expressing empathy to the sibling with IBD is crucial, creating a peer-based bond that complements parental support. Flexibility and practical assistance during flare-ups or medical appointments also goes a long way. Emotional support is equally vital. Lastly, maintaining one's own well-being is essential. While the demands of the sibling with IBD can be consuming, spending time with family and friends during the sibling's healthy periods helps preserve emotional balance.
For parents with multiple children, one diagnosed with IBD, I'd encourage open communication among all siblings. Avoid becoming so engrossed in managing the child's IBD that the other siblings' needs are overlooked. Offering individual attention to all children and diversifying the interactions with the sibling with IBD, beyond the context of the condition, is beneficial. Building a unified family environment that nurtures empathy and validates emotions is essential. Initiating family time unrelated to IBD serves as a strong foundation for this approach.
This concludes our interview. It is my hope that you are able to find some peace knowing that Bryce currently has healthy relationships with his parents and siblings. An IBD diagnosis in the family is certainly a challenge, but it is possible to work together as a family unit to overcome these challenges by communicating feelings and needs with one another. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. Even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge shout out to Bryce. His eagerness to participate in this interview speaks volumes about the heart he has for supporting this cause! And as always, stay strong IBD Warriors/IBD Warrior parents!
Hi! My name is Emily Fournier, and I am a wife, mom, and registered nurse currently living in MA. I graduated with my Bachelor’s Degree in Nursing in May of 2020. Since graduation, I have had experience working as a registered nurse in both a hospital intensive care unit and a community health center. Throughout my nursing career, I have had several opportunities to care for IBD patients of all ages, which has allowed me to gain a thorough understanding of IBD from a medical perspective. Through my friendship with an individual diagnosed with Crohn's disease at a young age, I have also been able to see how IBD affects every aspect of an individual, whether it be physically, socially, mentally, or emotionally. With Emily’s Gut Check, I hope to combine my medical expertise with a more holistic approach to IBD care in order to provide support and encouragement to anyone affected by IBD, but especially to parents of a child diagnosed with IBD. Please do not hesitate to reach out to me at firstname.lastname@example.org if you have any questions, need advice, or have an idea for a blog topic to cover. Thank you all for being on this journey with me!