Posted by ImproveCareNow™ on January 08, 2024
Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.
If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.
Be inspired by Kera's #IgniteTalk 🔥
My name is Kera Medhi! I am the co-chair of the Patient Advisory Council with the wonderful Shira. I was diagnosed with Crohn’s disease when I was 10 years old, but the journey there, like most IBD patients, was not easy.
Sickness in an elementary school spread like a wildfire, so of course when my seat partner, Alex, threw up in class, I was next. And the stomach flu hit me like a bus. I was out of school for around a week and a half until I felt okay enough to go back. The residual symptoms weren’t completely gone, I still was tired, my stomach still hurt pretty bad from time to time, but I was healthy enough to go back to school.
I continued 4th grade as normal. I went to lunch, my lessons, recess, came back to class, finished our learning, and then went home. And that pattern bled together for a couple weeks. The only difference was unlike before, I had to curl up in my seat and hold my legs close to my chest to make the pain go away. It was almost unconscious for me to start sitting that way in order to relieve the pain around lunchtime. And, of course, my teacher Ms. Halstead noticed, so she sent me to the nurse’s office. To say the least, I got sent back to class after 10 minutes with a heating pad and taking a couple of Advil. And that routine became my new normal.
I went to the nurse’s office for up to three days a week, every week, for around three months. On the worst days when she gave me Tylenol or Advil, the nurse had to call to let my parents know I had visited. On the better days, I just laid down with the heating pad for a bit and left without bothering anyone until I got home. I went to urgent care and the emergency room at least three times and visited my pediatrician twice within that three months. No one could help me. The consistent recommendation from doctors that we received was to take Advil and Tylenol because it’s not unusual for kids to have stomach ache and fevers.
By the third month I imagined my school nurse was getting pretty tired of visiting. She started to imply that I was lying to get out of class, but I imagine everyone here can tell I did not lie because I’m here speaking to you today.
At the time though, her suggestion infuriated me! I loved class! Every second in the nurse’s I counted down until I could go back to class and learn more. I already wasn’t listened to by the people in the Emergency Department and Urgent Care, so why should I have to defend myself anymore. I decided that I would avoid going to her office as much as possible. I had one more visit to Urgent Care and one more visit with my pediatrician where she had gotten me the soonest appointment with a GI doctor at Phoenix Children’s Hospital, which was three months away at the time.
Without the aid of painkillers during school, I started looking for patterns in my pain and realized that my stomach always hurt the most around lunch. My 10-year-old solution was to stop eating as much. I shared more of my lunch with friends and when they eventually got tired of the sandwiches and chips my parents packed for me, I threw away everything that was left at school and told my parents that I ate everything. Not eating helped enough at school for me to extend that finding to my other meals. It seemed easier some nights to find the time and force myself to throw up than to wake up in the middle of the night in pain. In simplest terms, food was hurting more than it was helping and was no longer worth it.
Around one month after that appointment with my pediatrician, I woke up in the middle of the night unable to move so my parents rushed me to the Emergency Department at Phoenix Children’s. I was admitted for 1 week after they found inflammation and signs of infection in my small bowel. Four of those days were in isolation because, still no one knew the cause of my symptoms. They put me on a course of antibiotics for 1 month through a PICC-line and I was shortly sent home with a follow up planned for the next month.
Just like the GI appointment my pediatrician set up, I wasn’t able to make it to the follow up before going to the Phoenix Children’s emergency department. After two-and-a-half weeks of antibiotics, I was running a fever and then I was admitted once again. This time surgery was inevitable. They were going to remove a presumed abscess and the surgery was set five days after I was admitted. The days leading up to it, the doctors on my rounds did one of the most impactful things possible. They listened. They included me in the conversation, instead of talking to just my parents.
Instead of using terms they’d learned in medical school to communicate easier, they made sure I had a reasonable grasp on what they were saying, but they didn’t sacrifice honesty. They explained that there was a high possibility that Crohn’s was causing what seemed to be an abscess in my intestines. And with that new name, I made several treks to the hospital library to read every pamphlet, book, and article they had.
Every time my team visited me, I had more questions and they were so incredible, because they took the time to answer each one with intention. What made this so incredible was that I had been dismissed by so many other providers. What made this incredible was that I wasn’t cut out of the conversation where I had been so many times. Where I saw a 10-year-old trying to go back to school, most of the other providers I saw, saw my issue as a problem that didn’t need to be solved.
In the blink of an eye, I was being rolled away for surgery. I had a little journal of all of the questions I had managed to think of, and the nurse waited until I had asked every single one and she had answered every single one to give me anesthesia.
It turns out I wasn’t lying, take that my old elementary school nurse. It also turns out that the “abscess” in my intestines was actually necrosis. After a biopsy was completed, the necrotized tissue had markers of Crohn’s disease which led to my ultimate diagnosis.
Once I was fully conscious for long enough, I met my new team on rotation and thus began my recovery. They introduced the possible next steps of biologics and nutritional therapy. And my research started once again. I asked millions more questions. But now for the most impactful part of my journey…my parents.
I still remember the crowd of about 5 providers standing at bedside and against the wall, with my parents sitting on the right. Looking back, it feels like a scene of a movie, but I know it was definitely less dramatic. My doctors asked us what we decided for the next steps in my treatment and my parents turned towards me.
My parents, who had spent almost 6 months watching their only child wither away in front of them. My parents who had watched me almost die without any explanation from anyone, looked at me. They had gone through every option with me, only ever giving me the facts and their advice when I asked for their opinion. So as everyone looked to me, (I remember it’s more dramatic in my head) time slowed down and I said I'd like to try nutritional therapy. I took the path less traveled and had no guarantee of success like most IBD patients, but my parents were beside me every step of the way as I learned how not to fear food anymore. My providers respected my decision and trusted me and my parents opened that door.
For the first 6 weeks post-surgery, I was exclusively drinking Pediasure peptides. This meant that when I returned to school, I was once again unable to connect with the other kids, sharing their snacks and eating their food. They shared their snacks out of kindness rather than self-preservation and I hadn’t known a life like that for a while. While they were exchanging snacks, I stayed in the nurse’s offices drinking Pediasures. I wasn’t allowed to go to recess, so while I healed, I spent time in the same nurse’s office that I swore I would avoid at all costs. Luckily there was a new nurse when I was able to start 5th grade. Her name was Ms. Briggs, and she was the most wonderful woman. She talked whenever I came into her office to me like I was a real person and not just a student or a patient. And if I ever felt pain I wasn’t afraid to go see her.
The Pediasures hurt my stomach all the time and left me nauseous. And I felt like I was back at square one in pain again, but I promised myself that I would get better no matter what the cost was.
After 6 weeks I was allowed 400 calories in small snacks that I could chew, and the rest was Pediasures for around three months. Then I started eating one meal a day, which was dinner, for a few more months, and then I started 2 meals a day on the weekend and 1 on weekdays, with regular Pediasures for around three months. I would drink Pediasures for breakfast and eat 2 meals and I used the Specific Carbohydrates Diet to first introduce solid food into my meals. And from there I tried every Crohn’s related diet until I figured out what specific foods worked best for me.
That team I talked about from the hospital took a very different form in my life post-surgery and diagnosis life. I had a GI doc finally, a nephrologist, a dietician, a surgeon, my pediatrician, and my parents. They all did such an amazing job focusing on my physical health because no wonder…my physical health had been so bad what else was there to focus on.
I tried so hard to be perfect. I learned incredible self control. I held myself back from sneaking food during lunch or at home. And I learned to be okay when my friends and family were eating in front of me while I couldn't eat anything. I was strict with myself. I was responsible for the calories I ate, when I ate, and what I ate, and how I ate it. It became my job.
The drinks worked though. In my head, a little too good at the time. I was up to a healthy weight for my height class, but it didn’t feel healthy. I was looking at the other girls in 6th grade, and they were all so skinny. I had gone from stick-thin to healthy over the course of a few months and that change was so sudden.
I was so good at knowing my calories in middle school, that when I didn’t need them anymore for weight gain, I still counted and calculated everything before eating even if I knew I was okay.
I couldn’t stop the comparison game.
I saw my friends and peers clear as day, but when I looked in the mirror it was warped. The fear that once stopped me from eating became hate and I decided food was the enemy. I started the cycle from elementary school, only this time it wasn’t Crohn’s that caused me to force myself to throw up or skip lunch…but myself. I stopped eating the food my parents sent for me and gave everything to my friends, not out of fear but disgust. And eventually said I was buying food from school. Once again, I was lying.
I refused to wear shorts and didn’t wear short sleeves without at least a light sweater even in the hot summer months in Arizona.
I was fighting my mind alone.
Of course, my doctor asked the “how are you doing” questions but “fine” is such an easy answer to say and not mean.
How could I tell the providers (the nurses, educational nurses, doctors, imaging specialists, pediatricians, dietitians) all the providers who had helped me along the way, who had spent so much time trying to help me that I failed the…that I didn’t deserve their time and effort? Somewhere along the line, I felt like a body trying to be preserved and not a person trying to be helped.
One day I woke up at the end of 8th grade, during the covid isolation, and didn’t recognize myself. I had longed to be sick again; telling my friends who had the same self-conscious thoughts as me that they were perfect the way they were. I missed being happy, I missed being full like when I was younger before I got sick. I missed not obsessively weighing myself, I missed not counting my calories, covering my stomach in case someone saw my scar. I missed not feeling terrible about myself.
My team wasn’t complete, and I started to see the side of my care that I was missing. Everyone, myself included, had focused so much on my physical health, but my mental health had been left behind.
With my then team we made adjustments and improvements. I started to make conscious decisions to eat, to make sure I was around people when I ate, and had a good support system so that I couldn't make any other excuses to starve myself. That new journey of self-love started around 4 years ago and every day I still have to keep making the decision to eat for myself. To look in the mirror and appreciate my strength and the stress my body withstood to keep me alive for as long as it did.
Along the way I found resources like the Body Image Toolkit the PAC had made when I was older which encouraged me to sign up. I found a community within the PAC and within Camp Oasis that gave me people who I didn't have to downplay my trauma around.
This is to say that just like our physical journey with IBD, our mental-emotional journey is never ending.
I still get the “Oh, I forgot you didn’t eat...” comments and they still hurt.
Just the other week was my homecoming dance, and I couldn't find a dress because I hated how my body looked in the mirror. I hated how I looked ugly in these beautiful dresses, and I couldn’t find any that fit me. For a second, I told myself I shouldn't eat as much. It’s been 7 years…and I told myself I shouldn’t eat as much.
It took some time, and I had to make sure I was around people during meals, but yes I eventually found a dress I felt pretty in and I went to homecoming and had such a great time.
Within pediatrics the difficult task is handing over power to people who only have a couple years of real-life experience and giving them the chance to make informed decisions. We don't just have rapidly changing physiology; we have a range of emotions and thoughts that grow especially from early adolescence to teenage years. When my doctors gave me control over my body again by letting me decide my post-surgery treatment. When my parents and school supported my decisions and gave me the tools to get better.
When the nurses and doctors humored all of my questions but answered seriously, they gave me my power back. I remember those moments and those people more clearly than any of the times that providers didn’t listen, or they dismissed me.
The whole is more than the sum of its parts. Now as a teenager, I've had to learn balance between my emotional health and physical health. That 10-year-old is now a 17-year-old who has had to learn that I am not just my diet or my physical health. The doctors who helped me back then, introduced the concept of self- advocating that has made me more confident to represent myself alone to adult providers when I transition.
The PAC I joined a couple years ago helped me find the emotional balance that I was missing. They gave me a community of like-minded people whose stories, experiences, and support have guided me and improved my awareness of future obstacles to come, and now I can do the same for others. The PAC has given me a way to make a positive impact for others than just myself and to improve the situation of those like me.
I felt so left behind in the medical system. But that community right there did not leave me behind. Just yesterday I learned a valuable lesson from my co-chair, Shira, when she said, “you’re allowed to take up space.” I am allowed to take up space.
And my Mom and Dad. For everything I read in the hospital, my Mom read three times as much. She gave me the strength to go to the library every day, to ask questions that I had been so ashamed of asking before, to evaluate options and ask questions until the providers were tired of me. And my Dad gave me the strength to get up again. He didn’t let me fall apart post-surgery. And he held my hand and walked me around the hospital floor 2 days after my surgery and didn’t let me quit. I'm their little storm trooper and their encouragement and belief in me is why I'm in front of you today.
We are all here right now because we’ve had those bad days. Whether it be a provider who couldn’t help a patient as much as they had hoped to, or a patient who has had no one who could help them. We are all here because we want to make change for the future kids, so when they have bad days, they don’t have to be as terrible. As someone who started my pediatric IBD care journey almost 8 years ago, I can tell you that from where I'm standing progress has been made. Mental health, eating habits, and overall a holistic and multi-disciplinary outlook on care have been much more ingrained into a lot more of my appointments, IBD-related and otherwise. But there is always room for improvement. These conferences, spending the time listening to these speeches and presentations, are some of the most important steps to continuing that change everywhere.
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