Warning for the squeamish. These posts will involve discussions of gastrointestinal function. If you have issues with that, or if you actually know me and won’t be able to look me in the eye after reading this, move along.
[Description: word cloud shaped like a stomach, built from online gastroparesis articles. Green to yellow colors on black background. Prominent words: “pain”, “nausea”, “vomiting”, “food”, and “malnutrition”]
I have gastroparesis. Gastroparesis is a fancy way of saying your stomach doesn’t work. Normal stomach function involves muscular movement as well as chemical reactions to help break down food. Food that is broken down in the stomach then empties into the intestine, where it will be further digested. People with gastroparesis have stomachs (and sometimes intestines) that don’t do this well. With gastroparesis, or GP, the stomach may move in the wrong ways, or may not move much at all. Gastric emptying is delayed, so food sits undigested in the stomach for too long. This can cause a number of symptoms like nausea, vomiting, pain, bloating, and feeling full even after eating small amounts of food.
A moment to discuss that last symptom, because in my 3+ years of living with gastroparesis, I have learned that many people do not understand what “feelings of fullness” are or how bad they can be.
[Description: Willy Wonka gif. Violet turns blue, swells, belt bursts. Text reads “I feel funny! What’s happening?!”]
“Feelings of fullness”, another term for it is “early satiety“. There are some cozy connotations with words like “full” and “satiated”. We associate a full stomach with satisfaction. The fullness you get in GP is not the satisfying kind. It’s is the kind that feels like you tried to eat your weight in food in one sitting. Most of us have had an experience of overeating at least once in our lives. Maybe you had a Thanksgiving where you felt the need to sample all three pies shortly after eating a very full dinner. The result is feeling like you ate a very large bowling ball. It is not cozy. It is very uncomfortable. This is the “feeling of fullness” that people with GP get, but it’s not from over-eating. We can get it from eating as little as a handful of saltines on what should be an empty stomach. It’s a truly gross feeling, and when it happens every time you eat even small to moderate amounts of food or liquids, it’s like a form of torture. Moreover, it means you have to be very careful about what you eat. Eating convenient but relatively empty calories when you’re on the go might mean that later when you’re home, you won’t be able to eat the nutritious, tolerable food that is waiting in your refrigerator.
The severity of gastroparesis varies for different people, and symptom severity doesn’t always correlate well with gastric emptying time. For some people, their symptoms are so bad that they cannot have any nutrients by mouth and must use feeding tubes or intravenous nutrition. Some can eat small amounts of a limited number of foods, so called “GP-friendly” foods, but still rely on non-oral nutrition to supplement their limited oral intake. Those of us who do still eat by mouth without non-oral supplementation still have to be very careful about what we eat, when we eat, and how we eat. If we are not careful, we may vomit up everything we have managed to eat; or we may become so nauseated that we cannot manage to eat much at all.
Causes of gastroparesis:
Sometimes, gastroparesis is caused by an identifiable condition and fixing the condition can fix the gastroparesis. For example, gastroparesis can be a consequence of certain autoimmune conditions. Addressing the autoimmune condition can address the gastroparesis.
Diabetic gastroparesis is one of the more common forms of GP. In diabetic GP, the vagus nerve, one of the major nerves controlling GI function, is damaged from poorly regulated blood sugar. Some people have GP caused by trauma to the vagus nerve – this can happen due to surgery or an accident or trauma. A large number of people with gastroparesis have what is called “idiopathic” gastroparesis – which means that doctors are unsure of the cause (or have given up looking for the cause). Although some people with “idiopathic” gastroparesis get better on their own, many do not. There is no cure for most forms of gastroparesis. Once the nerve has been damaged, function does not usually return.
Treatments for gastroparesis:
There are a few treatments for gastroparesis. As of now, I think there are only three medications which can help gastric emptying, so called “prokinetics”. One, (Domperidone) cannot be bought legally in the US. None of these medicines is 100% effective, and some of them don’t work at all for some people. The most commonly prescribed one, Reglan, comes with a black box warning from the FDA about side effects. Some of these side effects can be permanent, and it’s thought that the risk of developing them increases the longer you’re on the medication and/or the more of it you take.
For a while, there was talk of botox injections into the stomach’s pyloric valve (the part where the stomach empties into the start of the small intestine). I asked my (former) motility specialist about that and she told me they were shown to be ineffective (read this to get at better idea of what she should have said) and that insurance won’t always cover it. The gastric electric stimulator, an implantable device that works like a pacemaker for the stomach, has mixed reviews at this point, isn’t typically covered by insurance, and would not be an option for me on account of my metal allergies (the casing for the device as well as the leads have mixed metal components and there’s no way I can do a patch test with one that’s just “laying around”).
People with gastroparesis who can eat need to follow what’s called a “GP-friendly diet”, although how much of that diet any one individual can tolerate varies. For those of you who know anything about medical diets, a GP diet is basically a low fat, low residue diet. For those of you who don’t, it means you can eat very few things that taste good and/or are good for you. Low fat doesn’t sound so unhealthy, right? Until you realize that there are quite a few vitamins that are fat soluble, and when you have to avoid fat, you end up avoiding those vitamins. Low residue is really tough. That means low to no fiber. That means no fresh fruit and veggies. No nuts. No granola.
My favorite lunch until it started making me sick in 2013 had been spinach salad with tomatoes and roasted pumpkin seeds and a balsamic vinaigrette. No more of that. My lunch now, on a good day, is a small amount of plain white rice and a few pieces of boiled chicken breast. On a bad day, it’s 4 ounces of a meal replacement shake.
I also have two other dietary restrictions unrelated to my GP but which I have to follow or I’ll be sick: I’m lactose intolerant and I am so allergic to nickel that I have to avoid foods that are high in nickel (like chocolate or peanut butter) or I will get sores in my mouth and esophagus.
God damn trendy dietary restrictions!
[Video description: Silicon Valley Season 3, episode 8. Bachman tells Richard about his dietary restrictions.]
My journey to diagnosis:
I was diagnosed with GP in April of 2013 when my GI doctor did a gastric emptying study. Because I have had GI issues since I was a kid, and had already worked my way over to a motility doctor by 2013, my diagnosis was actually pretty quick compared to others’ experiences. A motility doctor is a type of doctor that I call a “very special specialist” – a sub-type of GI doctor who deals with issues of gastric and intestinal movement (motility) and transit. They really should be knowledgeable about both neurology and gastroenterology, however not all of them are.
My first appointment with the “motility specialist” was in January 2013, when my GI symptoms were not yet GP-like. In January 2013, I was still suffering from what was probably rapid gastric emptying and rapid intestinal transit time. The rapid emptying/transit symptoms had also started abruptly, way back in August of 2004. For the nearly 10 years between, I had gotten used to trying to find ways to slow my gut down so that I would retain food long enough to digest it, to get nutrients, to keep on weight, and not pass out from intestinal cramps. In the first few months that I had the rapid transit, I went from about 147 lbs to 112. I fainted a lot. I got a concussion from one episode. Although many of my other autonomic issues and joint pain from Ehlers-Danlos Syndrome were not as prominent then, I was still suffering from post-lyme syndrome from an acute neurolyme infection in 2002. The addition of this GI issue made grad school very difficult. There was not a lot of understanding or support: at the time, my graduate advisor told me that she wished she had what I had because she needed to lose weight.
Sometime in 2005 or 2006, I discovered that Amitriptyline, a medication often used for migraines (which I had), had the side effect of slowing GI transit. I proposed this medication to my neurologist at the time and it helped with my migraines and GI issues for a while. I also took Levsin, a sublingual medication that is in the same class of drugs as the medication that is given for nerve gas poisoning. The Levsin helped with the severe cramping I had every time I ate. Both the Amitriptyline and the Levsin slowed gastric emptying and GI transit. They weren’t perfect, but Amitriptyline worked enough to allow me to keep my weight on most of the time and stay working.
After so many years of rapid transit, it was a real shock to me to find my symptoms switched to the opposite extreme in March of 2013. I had had the flu that February and it was terrible. The week after, I had a intense oral and nasal thrush infection, despite not having taken any antibiotics for over a year. I’ve heard since then that sometimes your immune system is a little crappy right after a flu infection.
Just as the thrush was clearing up, the GP symptoms started. Every day. Every night. My predominant symptoms were nausea, retching, and vomiting. There was pain too, but I’d had so much abdominal and pelvic pain for so long that it doesn’t stand out in retrospect. The nausea stood out, and still does. There are meds you can take for nausea. Some of them work ok, some of them have side effects and/or risks of dependence. So you play a balancing game, you decide what is worse and then go with what side effects you can stand in order to remedy that even a little.
Because of the nausea, I’ve developed an habit of clenching my teeth. This habit eventually cost me a tooth in 2014 when an off site work conference left me without timely access to my “GP-friendly” food and beverages, which meant more nausea, and more clenching my teeth that day….to the point that one broke a molar the way home. Between the jaw clenching, the reflux, and the occasional vomiting, my teeth are taking a real hit from this disease.
I took the scary drug, Reglan, for nearly two years. About 17 months in, my nausea had started getting bad again, despite the nausea medication. My “motility specialist” advised me to increase my Reglan to 10 mg 4 times a day. That is a large dose. Within about a month of the increase, I started having mood changes. They were subtle, at first. Then came what I call “The Great Dopamine Crash of 2015”. It was a nightmare. 3 months of hell. I nearly admitted myself to a psych unit, except I feared they wouldn’t be able to deal with my medical issues and diet. So I stuck it out at home. Saw my neurologist, a lot. Saw my therapist, a lot. Talked to a few very good friends, a lot. And cried, a lot.
One of the doctors in the neurology practice said what was happening with me sounded like Akathisia, which can be a side effect of drugs like Reglan. I saw a shrink, who put me on an SSRI, which dropped my already low BP and made me puke (more). I asked him to talk to my neurologist, and he refused. I stopped the SSRI and I stopped seeing him.
My motility specialist was worse than useless. She put me on Lyrica. When I asked her which of my GI symptoms she thought it would help with – the heartburn, the pain, the nausea, the vomiting, the “feelings of fullness” (which at that point was feelings of food crawling up my esophagus), she insisted that it would help “with everything”. It most assuredly did not. It made everything worse. This was the last straw with her. I found a nice, smart, kind man who is now my GI doctor. He’s not a very special specialist but he calls me back himself, even calling unprompted to check in on me during a medical crisis. He talks to my other doctors. He remembers who I am, what I’ve tried, what’s worked and what hasn’t. I trust him and I like him, and the special specialist had no more to offer me than he does.
So now I am not on any drugs that help empty your stomach. I take an herbal “medication” called Iberogast. It helps some. It does not cure. I eat a lot less now than I did before I had to stop the Reglan. I take the nausea medication sparingly to avoid dependence and rebound effects. I try to save it for when things are so bad that I haven’t been able to eat in a day.
I’m left with a diagnosis of “idiopathic gastroparesis”. At the moment, this is my diagnosis because my doctors have given up looking for a cause. I had already been diagnosed with Ehlers-Danlos Syndrome, and because gastroparesis sometimes co-occurs with that (for reasons unknown), my (former) motility specialist and current autonomic neurologist have both assumed that there would be no other identifiable and possibly treatable cause. I had blood work that showed positive immunofluorescence for two anti-neuronal nuclear antibodies in 2013, but the western blots were negative. I did manage to convince a neurologist (who moved away shortly after) to test me for the antiganglionic acetylcholine receptor antibody, part of the Mayo Autoimmune GI Dysmotility work up. The large Boston teaching hospital where I had that test drawn would not release the actual results to me or to my primary care, just a handwritten note that said the test was negative. Consequently, I’ve sort of lost steam on chasing down possibly treatable causes at this point, although believe me, if I heard of a good neurogastroenterologist who I thought could help me and who I could afford to see, I would move heaven and earth to get to them. For now, I am at an impasse, and therefore pragmatically speaking, I have “idiopathic” GP.
How bad is gastroparesis?
My gastroparesis has made my other health issues worse, and much more difficult to manage. A while ago, my husband asked me, if I could get rid of just one thing that was wrong with me, what would it be? Without even a second’s hesitation, I said “the gastroparesis”.
It affects so many things in your life. In addition to how it makes you feel and the obvious health consequences of this sort of nutritional jeopardy, gastroparesis has a huge impact on your ability to work and to do things with friends and family. More on that later.