“Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine…Most people diagnosed with gastroparesis have idiopathic gastroparesis, which means a health care provider cannot identify the cause, even with medical tests…The most common symptoms of gastroparesis are nausea, a feeling of fullness after eating only a small amount of food, and vomiting undigested food—sometimes several hours after a meal. Other symptoms of gastroparesis include…acid reflux…pain in the stomach area, abdominal bloating, [and] lack of appetite.” (National Institute of Diabetes and Digestive and Kidney Diseases)
My illness was sudden and unexpected. In the summer of 2012 I was really active, hiking and running cross country. I was in great physical shape, and I loved to eat. But then I started to get sick. It kind of crept up on me. The first symptom was appetite loss, followed by nausea, pain, and feeling full. At the time I thought I kept having the flu, because if I ate less and babied my stomach for a week I would feel better, but I (and my family) were starting to get worried about my appetite and weight loss. I had also developed severe constipation, which was making everything worse.
“You Should See a Psychiatrist”
So I went to my primary care to ask her about it. She was unconcerned and kept asking me if I had an eating disorder. She sent me for an endoscopy to look for an ulcer, which came back inconclusive, as I’ve been told it often does. In her mind, that confirmed that nothing was wrong with me. When I told her I was getting worse, she insisted that the pain was psychosomatic and that I needed to see my psychiatrist.
I was outraged. I told her I thought she was profiling me because she knew I was bipolar. It didn’t help that I was so upset and frustrated at having my suffering totally invalidated that I was crying, which unfortunately happens to me a lot. I’ve encountered all sorts of bias and stigma regarding my mental illness, but this was by far the worst I’d received from a doctor. I came up against this bias over and over and I still come up against it to this day. Because my doctor knew that I was bipolar, on medication and seeing a psychiatrist (any one of those would be enough), she considered my word less reliable. Because I was a young, slim, woman, eating disorder seemed likely, and the fact that her test came back inconclusive confirmed that for her. The fact that I was emotional seemed to her to be proof that my symptoms were caused by my mental state, rather than the other way around. Because she had already made up her mind, everything I did confirmed her diagnosis – protesting, crying, getting angry.
A Diagnosis – But No Treatment
My (now ex) primary care finally referred me to a GI specialist who gave me a Gastric Emptying Scan, which showed I had gastroparesis. They gave me this one page flier with an outline of a stomach that said “You have gastroparesis – a Lazy Stomach.” It recommended a low fat, low fiber diet, with frequent small meals. That was it. Looking back, I can’t believe they thought was enough information. They way they treated it certainly didn’t give me the idea that my condition could become life threatening. I had never heard of gastroparesis and was not able to find much information about it. I did my best, but I was pretty much on my own, and my condition kept deteriorating.
Grasping At Straws
I tried to adapt my diet but to no avail. I still had the same symptoms and was getting worse. So I tried the holistic route. I went to a “whole health” doctor, who seemed really attentive and listened for a long time to my whole medical history, including all my years of chronic bronchitis, etc. He ordered a couple really expensive tests, none of which were covered by insurance and which ultimately told me nothing. He told me to buy some really expensive supplements and probiotics, which I did, and tried, again nothing.
At the same time I began seeing a whole health nutritionist. I told her my diagnosis, but she wasn’t impressed. She was sure that the root of my problem was food intolerances, and she immediately put me on an exclusion diet, which aside from being difficult to follow was also really expensive. It was basically leafy greens, nuts, fruits, and meat – which I later found out was exactly the wrong diet for my condition and actually dangerous because roughage and high fiber foods can cause a bezoar, which is basically a ball of indigestible food matter that hangs out in your stomach and can cause all sorts of problems.
Crashing and Burning
I did everything she said and ended up getting so extremely sick in the winter of 2013 that I had a mental breakdown and spent two weeks in the hospital, where a nutritionist was very surprised to see what I had been eating. They tried to transfer me to Beth Israel, but none of the hospitals in the Boston area were accepting new patients due to a virus outbreak. So I was released and was down to having no idea what to eat. I was existing on Ensure, broth, and jello. One day I collapsed, sobbing in pain, too weak to walk. My now-husband brought me to the ER and I was admitted, to spend 10 days in Beth Israel for severe malnutrition. At this point I had lost 20 pounds.
It was not a fun hospital stay. I had called my doctor beforehand and he talked to the ER Admitting department to expedite my admission, which helped. I was so sick and desperate, faint and weak, that a lot of that time seems kind of fuzzy to me. I received an IV and was scheduled for several tests. I woke up screaming in pain at one point and got rushed downstairs for an X-Ray. They found my colon was distended and made me drink something called Movee Prep (if you know what this is, I’m sorry, I feel your pain). To say that was unpleasant is a major understatement. My whole bowel was liquified and emptied in about half an hour. I also had a full abdominal and pelvic MRI, which took over an hour. They didn’t really find much.
After endless blood tests and a few days we started talking about feeding tubes. The whole stay was pretty horrible. They took my vitals every few hours including at night, so I barely slept. I had a roommate, the door was always open, the bell at the nurses’ station was always going off, so the noise was incredible. My vitals were bad, they didn’t like my blood pressure or blood sugar (too low), my weight (too low) and various electrolytes were off. I was curious about surgically placed feeding tubes but was scared off by one of the doctors telling me it was major surgery and trying to deter me.
Starting to Talk Tubes
We finally agreed upon a nasojejunal (NJ) feeding tube – a tube that is inserted through the nose and down into the jejunum (small intestine). This was in order to see if being fed in a way that didn’t use my stomach would alleviate my symptoms. If it worked well we would talk about permanently placing a tube surgically. They told me it was no big deal and shouldn’t hurt, but that I would need to be observed in the hospital for a few days to see if I could tolerate it and the tube feed solution. I was discharged with the tube, but the pain was so exquisite I couldn’t talk or drink, I only withstood it for about a week before yanking it out myself. However, while I was feeding through the tube, I did experience relief in my GI symptoms.
Within a few months I was back in the hospital a few times. After one admission, my GI doctor and reached an agreement that I would go to a completely liquid diet of Ensure and no solids. I would get labs each month to make sure I was getting enough.
But it wasn’t enough. I couldn’t get enough calories a day. Sometimes I would be so sick I could barely take in anything. When I had my period I would curl up in a ball crying, nauseated and in pain, so that would always put me back a few days. I was on Tramadol for the pain and a bowel regimen of Miralax and colace. I had a great GI doctor who had a theory that I had endometriosis and that was making my GI symptoms worse, which turned out to be true. I had surgery to remove it, which did help, but by the winter of 2013 it was clear that nothing wasn’t working. I had lost 30 pounds and could barely walk around the block. I collapsed occasionally. Once I collapsed and started shaking, white as a sheet, in shock from low blood sugar. The next day I was admitted again to receive IV glucose/saline with a blood sugar level in the 50s. I was given a blood sugar meter and testing kit so I could monitor. That winter I had another NJ tube placed as a preamble to a surgical tube (again). I had been talked out of it before but this time I was determined. I stuck it out for two weeks before I was in my doctor’s office, crying and begging for him to remove it. It was removed and I had an appointment with a surgeon.
Summary – A few days before my scheduled surgery I was told my weight was too low to safely have the surgery I need to save my life, insane as that might sound, and I ended up with a PICC line in my arm, receiving TPN (go here to read all about it) for a few months. I finally had my gastrojejunostomy (GJ Tube) surgery, went through a couple of months trying to get the tube to function correctly, and it finally does (most of the time).
So that’s the outline of my descent into illness and subsequent diagnosis and treatment attempts. Please read my posts about feeding tube tips and tricks, PICC lines/TPN, the medical world, mental health, dealing with a chronic illness, pain, and endometriosis.