My very first symptoms started when I was eight and couldn’t stay standing up through the whole prayer service at my Orthodox Jewish Day School every morning. Also that year, I started having trouble with holding down food and drink. Between ages eight and ten the issues just intensified and turned into a monster that threatened to tear my whole family apart, including the lives of my two little brothers, Michael and Jonathan (names altered for privacy issues) who were having their own issues that got shoved to the back burners because my issues were life-threatening and there’s were just life-altering. My GI issues were so intense by the time I passed out in an elevator at age ten that I hadn’t even been able to hold down any food or drinks at all. Not even sips of Gatorade.
I had my first hospitalization after passing out in that elevator. That hospital stay ended up being about three months long. There were different phases that I went through during that hospitalization.
Phase One: My Journey to Gastroparesis:
Medical Patient needing medical care due to an illness
Phase Two : Deflecting the Blame From the Real Monster
Psychiatric Patient experiencing bordering on abusive treatment by psych unit staff
Phase Three: Being a Surgical Emergency
Surgical Patient racing into the OR in a stretcher after multiple scans
Phase Four: Naming the Monster
Medical Patient dealing with a chronic illness.
If the nurses on the psychiatric unit had listened to my complaints of pain and nausea or checked my vital signs more frequently, I probably would not have had my bowel perforate, but I was just a psych patient and a kid, what did I know.
Once I was back on the medical/surgical pediatric floor recovering from my surgery and they had finished running their whole battery of tests on me the doctors came in for a conference in my hospital room with my parents and me.
The two doctors that came in were the regular hospital doctor and the stomach doctor.
I smiled anxiously at them. They pulled up chairs for themselves near the chairs my parents were sitting in around my bed that was loaded up with my whole crew of build-a-bears, heart monitor wires, IV lines, call bell, and all my other medical equipment.
They explained to my parents and me that I not only had an incurable chronic disorder called gastroparesis but that I also had a very severe case.
I found out that my stomach is pretty much paralyzed. It can’t absorb or digest food.
At this meeting with the doctors about my new diagnosis, my dad insisted that I didn’t have gastroparesis. He said he’d had a nervous stomach his whole life and I must have inherited it. He said we were catering to my hypochondriasis by saying I had an actual medical diagnosis. My mom pointed out that they had concrete medical tests that I couldn’t fake, proving that I did in fact have an actual medical diagnosis. But then she went and asked if anxiety was a known cause for this gastroparesis monster.
I just sat there for a moment feeling too many emotions at once to react.
The diagnosis made all too much sense to me.
I felt relief at having a name for the monster.
I felt validated for knowing I wasn’t just imagining symptoms out of stress.
Then I felt confused as to why no one had caught this earlier. Why were doctors and nurses and adults in general so bad at listening?
Most of all, I was angry with my parents for not believing in the physical part of the pain and suffering that I was going through. They believed in the mental part of my pain and suffering and would offer endless support around the schizoaffective disorder and the PTSD from the sexual abuse that they felt immense guilt and responsibility for, but they discounted the main source of my agony which was the physical pain and suffering part. This, in turn, did cause deep emotional wounds that scorched like severe burns.
My dad didn’t want to agree to the treatment proposed by the medical team, but when my mom told him that the alternative was watching me slowly starve to death, his fist tightened and then released and he begrudgingly changed his mind.
“She is going to need to have a special feeding tube inserted to bypass her paralyzed stomach. We will insert the tube with X-ray guidance to go in through her nose like the NG tube, but it will go all the way down into the middle of her small intestine. We call that area the jejunum. The tube is inserted with X-ray guidance in the Children’s Procedure Unit. She will receive sedation for the procedure. With the NJ tube, she can still receive all of the nutrition and medication she needs, just not by her stomach where it would cause more nausea, vomiting, bezoars, obstructions, and perforations.”
I stayed at the hospital about a month after that meeting with my brand new NJ tube in place. My NJ tube was different than my NG tube. They both went in through the nose, but my new NJ tube was thinner and more comfortable than the NG tube. Most importantly, the NJ tube made me so much less nauseous, and bloated and caused so much less pain since it was bypassing my paralyzed organ.
Because they put in my NJ tube with monitored anesthesia care I avoided all the trauma I had gone through with my NG tube placement.
We had to start my feedings very slowly and then go up. If I went up to fast I might get refeeding syndrome and have dangerous electrolyte imbalances, edema, and heart failure.
Finally, I went home a few days before my eleventh birthday. I still had my NJ tube in place and was in less pain, but the monster was still lingering in the background.