This piece is intended to be informational and in no way is meant to diagnose gastroparesis or suggest treatments. If you think you might have gastroparesis or any other medical condition, talk with your doctor.

Gastroparesis (GP) is a fancy way of saying slowing or paralysis of the stomach and digestive tract. It is thought to affect between 200,000 and 300,000 people in the US a year, and is a relatively rare condition. Diabetes is the most common reason for GP, and other causes include viral infection, connective tissue diseases such as Ehlers Danlos, neurological illness like MS, or damage to the vagus nerve during surgery. In more than half of cases a reason is never found. Major symptoms include constant nausea, vomiting, stomach pain, and feeling full after only a few bites of food. Symptoms can get so severe as to prevent adequate nutrition and hydration.

Treatment doesn’t cure gastroparesis, which is chronic and usually life-long. Early on in the course of the illness, dietary modification and medications can be used to improve symptoms and control GP. If that isn’t enough, there is a pacemaker-like device for the stomach that can help it contract better in people with GP. Unfortunately the device doesn’t work for many people with advanced GP. The surgery is only done at a few centers, and requires a lengthy recovery time. This wasn’t even an option for me because of my swallowing problems.

If the disease continues to progress, a feeding tube can be placed into the intestines to deliver formula and augment nutrition. Placing the tube in the intestines bypasses the paralyzed stomach and reduces symptoms. In some people, gastroparesis also severely affects their intestines and they can’t even tolerate tube feeds. In that case they end up on IV nutrition. If that fails, people will literally starve to death.

These are in no particular order, but you might have GP if…

You can drink plenty of liquid (beer) but you can hardly eat. In GP food tends to get stuck in the stomach and takes a while to enter the intestines. Liquids are moved along a lot more easily than solids, and are less likely to make GP symptoms worse. As the disease progresses even liquids can end up causing severe symptoms.

Saltines are a staple in your diet. GP symptoms can vary day to day, or even throughout the day, sometimes to the extreme that disappear almost completely and then become so severe a person is unable to do anything. I have gone days where I am literally unable to eat anything but a few saltines. More than that and I’m so nauseous I don’t want to move. Early on in the course of GP, eating foods that are easier to digest or switching to a more liquid diet, along with medication, can be used to reduce symptoms. As GP gets worse, even diet modifications won’t help that much.

You have been told you’re crazy or you have an eating disorder by enough people that you’re starting to wonder if they’re right. As a physician I learned very little about how severe GP can get, and had no idea someone might need a feeding tube or even IV nutrition. With GP a person may look completely healthy on the outside despite having severe symptoms. Many people with GP have been repeatedly told that they’re faking it or that maybe they have an eating disorder and don’t want to eat, even by medical professionals. If it were as simple as forcing myself to eat more, I would have done so. As it was, before the feeding tube I was forcing myself to get even the little bit of food I was eating. You can’t help but start to internalize messages like this and begin to doubt yourself. Finding a knowledgable medical practitioner and getting a diagnosis can help one realize that GP is real and a serious illness. Support groups on the Internet and Facebook have also helped me find others with GP I could relate to.

You are both nauseous and hungry at the same time. In GP food can sit in the stomach for hours or days, causing severe nausea and vomiting. Some people have profuse vomiting after a few bites of food or few sips of liquid. Because food isn’t getting to the intestines, the body is not getting any nutrition and will start telling you you’re hungry. If you’re nauseous and hungry and don’t have GP, you’re probably just pregnant.

Mild nausea is a good day. With GP nausea is one of the main symptoms. For me, I have nausea every day in varying degrees. Sometimes the medications I take can make it mostly go away, but other times they don’t even take the edge off. On bad days even the thought or smell of food can make nausea much worse. Before eating most days, I have to run through a list of foods to see if even the thought of anything doesn’t increase symptoms. With the feeding tube I eat very little anymore, which helps reduce nausea and pain. People ask if I miss eating more, but food has made my symptoms worse for so long that I don’t feel like I’m missing out.

You end up with a feeding tube because you can’t eat or drink enough. You can imagine that if someone is only able to have a few saltines for days at a time or vomiting up everything they try to eat, they aren’t getting enough nutrition. When my symptoms are bad, I can’t even force myself to eat. A few bites of food leaves me doubled over with pain and nausea and stuffed like I had eaten a 5 course meal. I got a feeding tube to help augment the nutrition I could get by mouth, and since have had a little more energy and have felt better. I also have a tube in my stomach that I can use to vent or drain gas, food, or liquids from my stomach when my nausea is bad, which usually helps. This tube also allows me to eat and drink a little without having to worry as much about how it will make me feel, because I know I can empty it if it’s too much.

You can eat in the shower or while asleep. In GP the feeding tube is placed in the small intestine to bypass the stomach. The intestine has no ability to store food, and so formula must be delivered slowly via a pump. I am currently hooked to a pump about 20 hours a day, including when I am in the shower or sleeping. Having a feeding tube, let alone two, has been a lot of work. I need to flush both tubes with water every 4 hours to prevent them from clogging, and I’m always adding formula and changing tubing. It’s a pain, but it’s worth it for me to get the nutrition I need. Still, eating is a lot easier. I am slowly trying to increase the rate formula is being delivered so that hopefully I’ll have more time off the pump. GPers often can’t tolerate a very high rate, so I may not be able to go up much more.

You can’t even tolerate tube feeds. In some people GP is so bad that the intestines also start to slow down. If this happens they may not even be able to tolerate getting nutrition through a feeding tube. In that case an IV catheter is placed in a vein close to the heart and nutrition is delivered through the IV. This is known as total parenteral nutrition, or TPN. TPN nutrient mixtures are custom made for each patient, and the person must get labs drawn each week. The IV catheter stays in place and can easily get infected, even with proper care. Infections can quickly become systemic and life threatening. If the IV catheter does get infected, it usually has to be removed and relocated to a new vein. Some people end up with so many infections they run out of places to put the IV or can’t tolerate the catheter anymore.

You are literally starving to death. If IV nutrition fails or becomes inadequate people will actually starve to death. In the most severe cases of GP, transplantation of the complete digestive system may be tried. There is no guarantee the surgery will work, and even if it does a person will be on anti-rejection drugs for the rest of their life. For many people this surgery isn’t even an option; a suitable donor has to be found and even then it’s extremely expensive, dangerous, and only done a few places around the country. Many people are so weak from the GP that even this isn’t an option.

As you might be able to tell, GP is a very serious but not well known condition. For many people symptoms can be mild, but for those of us with more advanced disease it can be debilitating. The treatments available can help alleviate symptoms at best, but can also be invasive and life changing. Those of us who live with GP are starving for a cure. August was gastroparesis awareness month, so thanks for reading and learning about this illness!