My name is Jerica and I was diagnosed with ulcerative colitis in April 2014; I am nearing my 10 year anniversary with this illness. Which has undoubtedly changed my entire life. Like many, I was misdiagnosed in the beginning. It took seeing 3 different GI doctors before someone understood my symptoms, and scheduled my first colonoscopy. I was young, just 27 years old when my life changed. Before my diagnosis, I was healthy and hardly ever sick. The first time I noticed bleeding was at the gym. I was living a healthy lifestyle. Working out daily with exercise and eating healthy. I was perplexed, to say the least, at how I could have this illness onset at 27 years old when I was doing everything right. That is what is hard about this disease, we don’t know why. No one in my family had Crohn’s or Colitis and I had never even heard of either of these before I was diagnosed. I will never forget the doctor who diagnosed me. He had me on everything trying to get the urgency and pain under control. I was taking prednisone, 6MP, and trying everything holistic that friends and family were suggesting. I did enemas at home, suppositories, VSL #3 and was trying it all in hopes to kick my ulcerative colitis into remission. It never worked, and in fact it got worse.
The first hospitalization was difficult. I had never before been admitted to the hospital for any reason. I was starved and given very little food. I was being given heavy doses of pain medications and after days of testing, scopes, bowel preps and more colonoscopies I was given my first biologic infusion. Nothing was helping and I spent weeks at Pomerado Hospital. I was then given a second dose of the same biologic a week and a half after my first infusion. The second infusion almost killed me. I had a life threatening reaction, and was told less than 1% of the population have had this reaction to this biologic infusion. I had contracted Thrombotic Thrombocytopenic Purpura or TTP. I was slurring my speech, confused, having what my mother would describe as stroke like symptoms. I didn’t recognize my family and my organs were beginning to shut down. I endured platelet pharisees treatments, which was a life saving measure. My only recollection was being told that my blood was being spun in a machine to help save my life. I recall my mom saying they had to bring in a special person to run this machine and that my Doctors were adamant that we needed someone, and quickly, as my organs were shutting down and there wasn’t much time. This was the first time they prepared my family that I may not survive. My mother would later tell me more details which included the doctors saying, “We don’t know what’s wrong with your daughter.” To which she responded, You need to start googling then.” It was a kidney specialist who looked into the 1% of reactions who diagnosed TTP. Time was critical and so was I.
I was weak, but I was strong; I have always been through this illness. It was after my first near death experience, that my mother would strongly encourage me to seek another route as medications nearly took my life. I recall sitting outside in the rain, in a wheel chair, when I made the decision to decline further medications as this adverse reaction to this particular biologic nearly cost me my life. This was when I asked for my care to be transferred to the best in SoCal, and I would transition my care to the IBD team at UC San Diego.
Dr. Boland was a fellow at the time of my first visit inside UCSD, under Dr. Sandborn, but I recall her empathy and kind voice as we discussed the very traumatic experience I had endured just a month and a half earlier. I was only in her office as a formality to the medical hierarchy to discuss a referral for surgery. There wasn’t anyone who could have convinced me to try another treatment plan nor did anyone, including Dr. Boland or Dr. Sandborn, try. My mind was made up and I wanted to remove my colon to avoid further complications.
In August 2014 just 5 months after my official diagnosis I would be under the care of Dr. Ramamoorthy who would unknowingly become a hero in my later story.
I had my first J pouch surgery in August 2014, My second J Pouch step 2 surgery in December 2014 and my presumed final take down surgery in February 2015—except this wasn’t the final takedown miracle surgery I had envisioned. I caught C-diff in my small bowel that went undetected in my body until the new incision burst causing me to go sepsis. This forced Dr. Ramamoorthy to make the decision to bring back my ileostomy. I was devastated to say the least.
Again, I was introduced to new medications that my body did not like. I had a seizure in front of my mother, who would later say was one of the hardest things she had ever witnessed. She was my rock. I recall the hallucinations from the drugs and being fearful and scared, but my mom never left my side. I left the hospital with drain tubes and a list of medications a mile long. My mother played the role of an at home nurse, caring for me at home, until I began to have another reaction less than 24 hours after being discharged from the hospital. My takedown surgery had failed, I had gone sepsis, I had a seizure and now I was having an allergic reaction to more medications. Micafungin and zosyn were the expected culprits and added to my growing allergy list. I went back to the hospital where I was given intravenous Immunoglobulin (IVIG) infusions. By this point I was no stranger to infusions, and my body was exhausted from all complications. The IVIG infusion caused my skin to flake off and my hair to fall out, I was devastated.
2014, 2015 and 2018 were my almost didn’t make it years. After my spiral of reactions, sepsis, and seizures I waited for my body to “heal” before I would try the takedown surgery for a second time. I thought, what could possibly happen. In my mind I had been through it all, but I was wrong.
In 2018 I checked into the hospital to have my final takedown surgery (try #2). I was ready, I had done EMDR therapy, seen a therapist for trauma related flashbacks and had even gone back to the gym to get myself prepared (as best as I could) for the final surgery. On the off chance something went wrong, I was determined to prepare my body for whatever might happen. It was my dedication to get back to myself without a bag that drove me. I knew deep in my defective gut that I had to be my strongest, and I did everything within reason to get there. It was a good thing I did. I checked into the Hospital on April 25th, and would be released on June 28th, 2018. What I didn’t prepare for, was that I would be in a medically induced coma for the entire month of May and wake up just days before my 32nd birthday in June.
April 25th, 2018 I had the takedown surgery which was successful, however I was vomiting profusely and unexplainably. I underwent an exploratory procedure, under sedation, and aspirated. When I awoke from this pouchoscopy, Dr. Boland’s face was the first one I remember seeing. There were looks of concern and many nurses and medical personal surrounding me. Asking me questions, who they could contact and I gave them my mother’s phone number in New York. I told them she would know what to do. I don’t recall a lot, but I saw the look on Dr. Boland’s face and her emotions could not be camouflaged. It was bad. She looked me in the eye and said, “You threw up under anesthesia and that acid got into your lungs”—-at the time I didn’t understand the severity of what she was saying but the look in her eyes and the tone in her voice was unmistakeable-she was trying to maintain her composure. I very directly asked her “Am I going to die?” Her response was, “We’re going to do everything we can...” and in that moment I heard codes over the loud speaker of the entire hospital being called for me. I’m not really sure what happened next but I saw Dr. Boland tearful and a nurse named Donna looked at me and said, “My name is Donna and I’m going to be by your side, I won’t leave you.” That was my last memory before everything went black and more than a month later I was brought out of the coma with a trachea, tubes everywhere, unable to speak, unable to walk and barely able to move. Although in my head I was talking. I recall hearing people tell me things, and in my mental state of confusion I was responding—except I wasn’t. My mind has always been stronger than my body. My mind is what I believe has saved me from death more than once, but it is also what hinders my ability to let go of the trauma. Code blue, sepsis, TTP, IVC filters, blood clots, bowel preps, platelet paresis treatments, biologics, 6MP, Prednisone, fear, pain, resilience, EMDR therapy, Dilaudid, anxiety, depression, tracheotomies, hallucinations, coma, ECMO, life support, IVIG infusions, hair loss, weight loss, incubation, G-tubes, NG tubes, PTSD, —-these are just some of the examples of what can happen to someone with Ulcerative colitis.
As a result of my last takedown try, in addition to being put on ECMO to save my life I endured three lung surgeries and woke up with staples, drain tubes, a G tube in my stomach, and a trachea. It wasn’t ulcerative colitis that almost killed me, it was the drugs and medicine and surgeries and complications that compiled into the scariest moments of my life. But through every single horrific situation I endured, I knew I kept surviving for a reason. I knew my life had a purpose because I was so close, so many times to not surviving but God had a purpose for me. My purpose would be my Son, Grraison.
In 2021, just 3 years later, after being on life support in 2018, I was blessed to find out that my body would once again be extraordinary and I was pregnant with my son. I had mentally endured a lot to this point. I had gone through a divorce, became a certified yoga instructor, I was working on me as a person in the middle of a pandemic.
My body had endured a lot, but I knew the moment I was pregnant, this was my purpose the whole time. The reason for my survival. My son was the light at the end of that long IBD tunnel I had been walking through for 8 years. I believed whole heartedly that all along it was my destiny to be a mommy to my son. I was unknowingly being guided through every IBD related trauma to get to my greater purpose. Being Grraison’s mom was my purpose, and when I held my son for the first time in the same hospital, surrounded by Dr. Ramamoorthy and her team as well as Dr. Tarsa and her team, it all seemed to come full circle. It was all unbelievable. I almost lost my life in the same hospital where I brought a new life into this world. The overwhelming feeling of gratitude for life, hope, faith and new beginnings was unbelievable.
I always heard a chime over the PA system of bells in ICU and I would ask the nurses what it was. I was told by the ICU nurses it was either when a baby was just born or when they leave the floor to go home. I would hear this chime multiple times a day while I was in ICU, and it always made me smile. I never in my dreams would have guessed I would one day, press the button that played the chime over the hospital speakers as I left the delivery room floor with my own baby. It all came full circle for me. My IBD journey at UCSD was that of a dramatic romance with the happiest ending. My son is the why I survived. The reason why I pushed on so hard. There was a drive inside me not knowing where I was going, but I kept on going. One step at a time, I just kept taking steps.
