Growing up with IBD: An Interview with Randi Renfro

Hello everyone! My name is Emily Fournier, and I am the author of Emily’s Gut Check! I am a wife, mom, and registered nurse who is passionate about combining medical knowledge with a desire to holistically support parents of children with IBD. This post is special because I decided to interview one of our very own IBD Warriors, Randi Renfro (Fournier). Randi has had over 20 years of experience with IBD; she started having IBD symptoms at just 4 years old. If her name sounds familiar, that is because she is one of Lisa’s daughters and a member of the IBD Connect Board of Directors! I was able to send some questions to Randi, and she types out her answers for us. In this interview, Randi answers questions about the physical, social, emotional, and mental impact that IBD has had on her life. We discuss growing up with IBD, making the transition to college, and starting her career as a registered nurse. She even shares advice she has for parents of children with IBD. With her personal experience living with Crohn’s disease for the majority of her life, as well as her experience as a registered nurse, Randi has a wealth of information about IBD. I hope you enjoy the interview!
 
Also, if you haven’t read it already, check out my first post, “What is IBD?” This post provides a broad overview of IBD, including information on symptoms, diagnosis, prevalence, complications, and treatment options. It serves as a great starting ground for IBD research and knowledge. However, as I stated in the last post, my blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD. Without further ado, let’s get started!
 
Can you please introduce yourself? Give us a little bit of background about who you are! 
My name is Randi, I am 24 years old, and I am a Registered Nurse. I grew up in Massachusetts, but moved to Colorado with my husband in June of 2022. We are now expecting our first child, a baby girl, in July! My mom is Lisa Fournier, who most know and love for IBD Connect Inc. Both my mom and dad were very involved in my childhood. I have two older brothers, and an older sister. My sister was very supportive of my illness growing up, and was diagnosed late in life with Crohn’s. I am very family-oriented, enjoy hanging out with friends and the outdoors, and love to support others with IBD. 
 
When were you diagnosed with IBD? Were you diagnosed with Crohn’s disease or ulcerative colitis? How old were you? Do you remember the circumstances surrounding your diagnosis (i.e. how you were told, how you felt at the time, etc.)? If so, please describe that for us. 
I was originally four years old when I got sick. I do not remember much, but hear I missed a lot of Kindergarten. I was not officially diagnosed until I was six, and was diagnosed with Ulcerative Colitis. I do not remember any specific feelings as I was so young, but I have very specific memories. One I remember is my mom carrying me into school midday to pick up packets of work to do at home. Another is being hospitalized and the saline flush hurting me, so the nurse let me do it slowly to not hurt. I stayed sick despite trying medication after medication, so continued to have frequent hospital trips. It was not until I was nearly 12 years old that I was diagnosed with Crohn’s instead, and tried a new course of treatment.
 
If you feel comfortable sharing, what areas of your GI tract have been affected by Crohn’s disease? Where is your inflammation located? 
It depends on the time period. Early on, most of my small and large intestines were inflamed. I had many issues getting control. After starting new treatment on a class of medication called biologics, I only gained remission temporarily. Once out of remission, I was not super sick, but had symptoms. This is when most of my disease was in my descending colon and rectum. This area has remained a problem area for me. 
 
What has your treatment looked like over the years? What medications have you been on? Have you had any surgeries related to IBD? 
It has been a bit chaotic. I do remember the very first medication I tried. It was sulfasalazine, a standard first line drug, and was allergic to it. After that, I flew through the classes of medications, none really working. I specifically remember many of the aminosalicylates; pentasa, asacol, and colazol. I was on and off steroids like prednisone and entecort, as well as steroid suppositories and enemas. Some of the medications I tried, I was part of trials for since they were newer and not used in children. I went from crushing pills and opening capsules, to swallowing 10-15 pills a day. I tried probiotics alongside medications, and diet changes. I have never had surgeries related to IBD, but countless colonoscopies/endoscopies with biopsies, pill capsule studies, and MRIs. 
 
Let’s take a trip down memory lane. You said you originally got sick when you were 4 years old. Do you remember how you felt starting elementary school? How do you feel like Crohn’s disease impacted your elementary school years?
I don’t remember much of elementary school with it. As said earlier, I remember very specific memories that were impacted by IBD, but not general feelings. I remember not wanting to talk to my first grade classmates, so I pretended to sleep on my moms shoulder. I am sure I did not want to answer questions about my illness, but did not know how to express it. Later in elementary, other symptoms appeared and I remember frequently being stressed about going to the nurse for pills, or leaving for a long time to the bathroom. 
 
As you got older and began transitioning to middle school and even high school, how do you feel like Crohn’s impacted your learning and education? Did it? 
I remember more of this time period than my younger years. Middle school was difficult and I averaged about 50 missed days per school year. This was when I had to get a home tutor to keep up with school work, and really felt stressed about falling behind. I think being sick and not having a lot of control during this time, brought about different anxieties with school. I attempted to gain my control in other areas; I was very diligent about not falling behind in work. I would often stay after even if I understood topics just to make sure I would not fall behind. I think IBD made me work extra hard and brought about a lot of unnecessary stress surrounding my education. 
 
Did you have any special accommodations in school, like a 504 plan? If so, do you feel like you benefitted from these accommodations? 
I did have a 504 from a very young age. I believe it started in late elementary or first year of middle school. I was very indifferent about having it in place. I did not want to feel different and was often anxious about my mom meeting with teachers and “highlighting” my IBD. However, the actual accommodations were extremely helpful and took other anxieties surrounding my illness away. Being able to leave class without questions being asked, extended time on exams to accommodate for bathroom breaks, and unlimited access to water were all super helpful. 
 
How do you feel Crohn’s impacted you socially? Any trouble making or keeping friendships? Dating?
This is rather difficult, because my anxiety in general made things difficult, and it is hard to say whether that anxiety stemmed from IBD or just on its own. I definitely was very quiet throughout all of my schooling. I was loud and crazy with my select friends, but it took breaking through the shy shell to get to that point. I did have many friends, but it was a tight group of them. I was often anxious around larger groups or more “popular” crowds in school. I was very comfortable with my IBD, mainly from growing up with it, and I think that helped with long-term friendships. I had some friends who would come to my IV infusions, and made a fun day of missing school doing it. Most knew my illness was often focused on poop, and I tried to help lighten the topic around it with humor. As I got older and entered dating relationships in highschool, I found that not hiding it made it easier. If they knew right away, it was not an anxiety-provoking secret. I usually opened up by saying to NOT google it, but let me explain. This did not always work, but I then gave my perspective and could answer questions. 
 
Let’s talk mental health. As you were growing up with Crohn’s disease, how was your mental health impacted? What strategies, if any, did you use to cope?
I think IBD brought forward many anxieties, that then turned to more of OCD/general anxiety. By losing a lot of my control of my own body at a young age, I gained control elsewhere. I remember being very specific about picking out clothes for school, and if weather changed, I would have full panic attacks about it. Later in middle school, I was often anxious speaking in class or to people that weren’t my friends. I hated a spotlight, which is very unusual for me, and I think that stemmed from the spotlight on me at home and at doctors. In high school, things got even worse. I often went to the counselor at school during classes as my anxiety would spike. I ate with the counselor, and really struggled falling asleep at night. I began seeing a therapist outside of school and later started anxiety medication. Many of my strategies came from my counselor and therapist. I often talked through where I thought the anxiety was coming from, and it was often my fear of being different and not liked. However, I never directly had this experience. I had not been highly bullied, and my friends were supported, but I knew how mean kids could be and struggled so much. Once on medication and years of therapy, I was able to have a lot of coping strategies that are not always needed now. Everyone is different, but I think any chronic illness can bring about anxiety and depression, even if you do not directly see the connection. There are underlying fears and anxieties around the illness that are displayed in different ways, and different coping strategies will be needed. 
 
You don’t have to go into details, but at any point as you were growing up, were you embarrassed or ashamed of your IBD? If so, how did you navigate this?
Oh gosh yes! This disease is centered around poop. As a teen, this is especially embarrassing. I remember field trips where bathrooms were not readily available and having to awkwardly pull buses full of students off the highway to get to a rest stop. Everyone stared as I ran off the bus to explode. I remember being with my dad at a mall and having a full accident. I ran through the mall with diarrhea running down my legs…and it was my dad that had to buy new things for me. Then there was the bloating, gas, steroids making me fat, etc. I do not think there are any good ways to navigate it, but ways to learn from these things and other’s experiences. I started having my mom drive to field trips as a designated chaperone, but also taking friends in the car with me for more fun. I started carrying extra underwear and pants if I knew places would not have bathrooms close together. I would look up where bathrooms were wherever we were going. Then, as I went to Camp Oasis, I learned from other people’s stories of embarrassment and was in a safe place to express my own and find humor with other people like me. 
 
Please give us some details about how you made the transition to college. Did you change where you received medical care for Crohn’s disease? Did you feel like the transition to college was particularly stressful? How did you navigate your newfound independence in relation to your IBD journey?
This transition was wild, but I was SO ready to not have my mom control my illness. However, I quickly learned I needed to ask a lot questions. When I went to college, I was also at the point to find an adult GI, so I did transition my care as well. I asked my pedi GI for recommendations, and found one close to my college to go to. This is when I started going to appointments alone, but I liked being able to talk freely and not feel like I needed someone to describe things for me. I also learned a lot by having to take over discussing symptoms; I had to actually say what was going on and ask the questions about medications that my mom usually did. I definitely struggled a lot, but my mom tried to give me as much freedom as possible. I often updated her after appts and got to clarify things that way. There was also a physical and mental health component to the transition. Any big change brings about flare-ups for me, and college was no different. I luckily had Emily as a close friend on campus with me. I could confide in her when I was not well. I quickly tried to make other close friends so that if I had to miss class, I had a friend in each one that knew what was going on and could get notes for me. I had the added stress of adjusting to being away from home, the independence of my managing my schedule, and juggling my illness. I do not think I had a specific way of navigating all of this; I just learned as I went. I knew I wanted my education, and I knew I needed to prioritize my health. I went to as many classes as I could, but I made sure to miss a class or two if I needed to sleep and catch up on rest. With this, I also found friends to study with and learned office hours, so I could clarify things I missed. I did prioritize education and health, so often did not have many social activities going on. I did not party or stay up late, but the friends I found were similar to this and helped me not feel like I was alone in this. Lastly, I had to adjust to food. The food on campus often was not helpful to my IBD. Starting my second year, I got housing with a kitchen and had to get an on-campus job so I could buy some groceries. I found friends to live with that also wanted to cook so that we could split groceries. I was able to cook things that were better for my Crohn’s, and this helped. It was a huge learning curve, but I am so glad I pushed through the flare-ups to figure out my independence. 
 
While you were in college, were you able to receive any type of learning accommodations? Did you feel as though Crohn’s disease impacted your education? 
I did have a continued 504 in college. I was able to adjust things, and it was much more formal/restrictive than in high school. I was able to still get testing accommodations where I would be in a different small group. This allowed me to have extended time and leave for the bathroom during exams. Normally you cannot leave at all, but this helped take that stress away since I had more time and could step out. Knowing this was in place often took the stress away, and made it so I did not need to step out. I don’t think it impacted much of my college education. The professors did not care as much about whether you showed up or not, and I was able to still get notes as friends helped me or they posted lectures online. I think making my own schedule and planning times of rest helped me stay on top of things better. 
 
Post college graduation, do you feel like IBD has impacted your career? In what way?
I am not really sure on this one. I jumped into the typical nurse schedule of three 12 hour shifts per week, and that was definitely hard. I did not tell my employers during interviews that I had IBD, but that was a personal choice. I did become familiar with sick time policies. I was probably more fatigued from long shifts than others, but my body adjusted and I learned tips and tricks to help. 
 
When looking back on your childhood, is there anything that you wished you had done differently in relation to growing up with IBD? Anything you wish you did more of? Anything you feel like you or your family did well?
I wish I was not as anxious as I was. When not in school, I was loud and fun, but hid that side. I think this held me back from other friendships I could have made. I always wanted to be carefree, but couldn’t. I am thankful for having IBD, though, because I learned to prioritize myself and my needs. My family was great at making me feel “normal.” Obviously, there were times I wanted them to just stop talking about IBD, but they always found ways to work with my symptoms while still doing outings and trips. This greatly helped with not feeling secluded. 
 
Lastly, do you have any advice or words of assurance to give to parents of children recently diagnosed with IBD? Any final thoughts or comments? 
It is scary and unknown. You will feel that you are losing so much when newly diagnosed, but that does change. Try not to focus on what you child now cannot do, because it is temporary. Once healthy, we can do everything others can, if not more! It is extremely stressful, but we adjust and learn from everything that happens. I think I am more responsible, empathetic, and wise due to having IBD. However, I did not lose the fun side of life; I go on trips, have groups of friends, and find so many good things in life. For final thoughts…just reach out! If you or your child are struggling, you will find someone who has been through similar. I am always here to talk, listen, or give advice. Everyone within IBD Connect is as well! I have lots of first-hand experience and would love to help you navigate this wild journey. 

This concludes our interview! Randi’s answers to my questions speak for themselves; growing up with IBD can be challenging. It can impact many different areas of your child’s life. Having a solid support system can make a huge difference! If you’re interested in an IBD Connect support group, the link to get more information is linked below. If you have a question or need guidance, you can always email me as well, and I can help you to get connected. My email address is also linked below. It is my hope that you were able to gain something from this interview, whether it be one of Randi’s helpful tips you can implement, laughter from one of her stories, or simply the comfort in the knowledge that there are others who grow up with IBD. As always, feel free to email me with any questions or topics that you want covered in a future blog post. Thank you Randi for a great interview! Stay strong IBD Warriors/IBD Warrior parents!

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