October 5, 2021

Living with IBD

how to live with IBD

My Diagnosis Story: At the age of 15 I was a scrawny, little girl with terrible stomach pains and barely any meat on my bones. But let me backtrack. At the age of 12, when I wasn’t growing or gaining any weight, while all my friends were thriving, I was misdiagnosed with a growth hormone deficiency. I started growth hormone treatments, which I was on for almost 4 years; and even though I grew, I was making little progress with my stomach pains and my weight gain. So we (and by we I mean my relentless Mom who never gave up on me, and me) went back to the hospitals, back to the gruesome tests, back to the doctors… only to get misdiagnosed again with an eating disorder. But my Mom and I swore to the doctor that I was eating, I just wasn’t gaining any weight and was in a lot of stomach pains constantly. God, the Universe, (or whatever higher power you believe in) must have wanted to help me out when he put me under the care of Dr. Jesse Reeves-Garcia at Miami Children’s Hospital because he properly diagnosed me with Crohn’s disease at the age of 16, with only 75 pounds on my 5’4″ frame. He quickly put me on a high dosage of steroids to help with inflammation, which got me on the path to recovery. 
Treatment Plan:The steroids worked well for me for two years. Once they stopped working, Dr. Reeves decided to put me on Remicade, which I was on for almost 11 years. During that time, I did have to have a small bowel resection, but other than that, I was able to live a pretty normal life with my Crohn’s disease. 

Recently, my doctor switched me from Remicade to Stelara, which I actually just started two months ago in the hopes of getting my disease completely under remission as I start family planning.

Where I am now: I am happy. I am healthy. I have the most amazing team of caretakers, including my husband, who battles this chronic disease with me and complies to my dietary restrictions and gives in to my every craving; my family and my friends, who have gotten me through very rough Crohn’s disease days (you know, the ones where you can’t even get out of bed); and of course, my incredible team of doctors and nurses at Cedars Sinai LA led by Dr. Christina Ha. I am not fully in remission, but my doctor is working arduously to get me there. And I know we will. 
I also wrote a moving note for my last Remicade infusion. I think it might be helpful for other patients in a similar place as mine: 

My last infusion ever July 22, 2021
As the nurse pokes my vein to draw 12 tubes of blood (checking for TB, hepatitis, CBC differential, regular blood work, mercury levels, etc.) tears start running down my cheeks.
“I can stop if you need a minute”, she says kindly. Her name is Kristine. I’m holding my husband’s hand tightly, he knows how much I dislike needles. I’m looking at the painted canvas that acts as a room separator and I look up at the high-ceiling recently renovated room at Cedars Sinai Hospital in Los Angeles. I feel the blasting AC hit my body and the needle successfully go into my left arm. I ask her to please continue and I grip my partner’s hand a little tighter (mental note: I owe him a hand massage) because it’s not sad tears rolling down my face and splashing on the comfortable gray reclinable chair.
It’s tears of gratitude slipping from my eyes. It’s gratitude to be treated in one of the best hospitals in the world, with some of the most caring nurses in the world, who care about my well-being beyond the walls of this hospital; who deal with my intense fear of needles—and the kicking, crying, cursing and screaming that comes with it; who accept my apologies for cursing under my breath when they stick me; who genuinely care for me.
It’s gratitude for being under the care of one of the greatest medical minds when it comes to IBD, Dr. Christina Ha, who doesn’t settle for having my disease under control but pushes until we find the solution to get me under remission; who holds my hand right before I go under for my yearly colonoscopy because I’m scared (it’s kind of our thing now); who hugs me when I cry loudly because we didn’t get the results we wanted; who promises me she’ll get me to a healthy place so I can have a safe pregnancy in the near future; who reminds me I have to remain positive through it all, regardless of the latest lab results; who patiently answers my every question, and who works so hard to keep me healthy. My Mom would have loved her. I’m actually pretty sure she finessed my care under Dr. Ha straight from Heaven.
It’s gratitude for having the most loving life companion, who calms my fears of all the scary side effects of this new drug by making a joke about those crazy pharmaceutical commercials we watch together that warn for everything; who makes dinner for me after infusions because I’m too tired to stand up; who drives me to every single infusion every six weeks without hesitation or complaints; who holds my hand through every needle stick and tries to distract me with “busy talk” like my Mom used to do when she held my hand 11 years back for my first infusion.
It’s gratitude for God’s Grace for putting me in the hands of this medical team; for guiding my path with this scary illness; for giving me strength and courage to battle Crohn’s disease with positivism and gratitude; and for not letting me lose hope.
It’s gratitude for my body for carrying me through all of these infusions since I was only 18 years old; for allowing me to receive these different drugs successfully with relatively no side effects; for giving me a grateful heart that can see the good in everything, even a chronic life-long illness.
It’s gratitude for my friends and family who have supported me in this journey through the flare-ups, the infusions, the new drugs, the dietary restrictions, the weight loss; who educate themselves on Crohn’s disease just so they can help me navigate it a little bit better; who keep track of my infusion dates and gastro appointments so I don’t feel like I’m going through it alone; who are texting me simultaneously throughout my hour-long infusion, checking in on me or just trying to keep me company virtually.

It’s gratitude for my father; who takes care of my medical bills so that I don’t have to worry about the finances behind my illness and I can focus on battling my illness; who has supported me so that I can get the best medical care and treatment for my disease as possible; who was by my side for my first and only Crohn’s disease related surgery 8 years back.
It’s gratitude for my Mom, who didn’t give up on an incorrect anorexia diagnosis 13 years back; who relentlessly fought to get me the best possible care; who didn’t give up on me—or my health— ever; who treated me to shopping sprees and yummy meals for making it through “tough” days at Miami Children’s Hospital when the doctors couldn’t find what was wrong with me. Gratitude that even after she’s gone, my illness— and everything in me and around me— keeps me connected to her. She would have been so happy to know that medicine has advanced to the point that I can now inject myself at home instead of coming to the hospital for IV infusions every 2 months. I know she is happy today. I know she is celebrating with me right now.
And even as I write this, the tears— and the gratitude— keep flowing. Thank you, God, thank you life. Here’s to the next chapter of my Crohn’s Disease.