The Difficulty of Staying Hydrated When You Have Gastroparesis
For those following The Mighty’s “My Mighty Month Challenges,” you know that July’s self-care challenge was to drink enough water. Dehydration is a problem that occurs when a person uses or loses more fluid than they take in each day. For me, staying hydrated is a constant struggle I have to deal with not only during the hot summer months, but all year long. As mentioned in the July Hydration Challenge Article, the amount of water that is considered “enough” for each day varies from person to person depending on health, climate and daily activities.
For those of us living with gastroparesis, getting enough fluids of any kind is often a challenge. Gastroparesis is basically what it sounds like: a paralysis of the stomach. In normal stomachs, strong muscle contractions move food through the stomach and empty it into the small intestines. With gastroparesis, these muscle contractions are either weak and slow or do not happen at all. This means what a person with gastroparesis eats or drinks may sit there for hours, just hanging out in the stomach.
As the day moves along, more and more food and drink, along with stomach acid and gastric juices, mix and mingle in the stomach. In a normal stomach this all empties into the small intestines without anyone noticing. However, with the gastroparesis stomach it just continues to sit there, filling the stomach, building up pressure and causing pain. A person with gastroparesis may notice they feel full after just a few bites or they may notice other symptoms such as pain, nausea and vomiting.
I have both gastroparesis and complex regional pain syndrome (CRPS), which makes managing both diseases a little more challenging. My doctor refers to my gastroparesis as idiopathic because they don’t know the cause of it. Thankfully I have a neurostimulator for pain because certain pain medications can slow down how fast the stomach is emptying. I try to avoid medicines that are known to slow gastric emptying and make me more sick, but that isn’t always possible.
Unfortunately, the stomach can only hold so much and then it has to empty one way or another. For those of us living with gastroparesis, we find ourselves vomiting frequently. One of the complications of gastroparesis is severe dehydration. Sure, we can push ourselves to drink more water daily, but that is sometimes easier said than done.
I try to manage my gastroparesis by following the strict dietary guidelines of a gastroparesis-friendly diet. I saw a dietitian who helped me to understand the importance of eating smaller meals more frequently instead of large meals three times a day. She also explained to me that fatty foods and foods high in fiber were more difficult to digest and would make my symptoms worse.
I also allowed my GI motility doctors to implant a gastric stimulator. The gastric stimulator works similar to a pacemaker, except it’s connected to the stomach, not the heart. It gently shocks my stomach muscles, causing them to contract, which helps move food along a little faster. With the gastric stimulator and modified diet, my gastric motility (the rate at which food and liquid empties from my stomach) does show improvement, but is still slower than normal. Due to my slow motility I still vomit an average of six to 10 times a day. To the average person, that might seem like a lot of vomiting, but for those of us with gastroparesis, we realize that six to 10 times a day is a big improvement when compared with the nonstop 20-30+ times we may normally vomit each day.
So, how does one stay hydrated when they vomit so frequently? I must admit it isn’t easy and things can get a little tricky. Most of the time my body shows signs of being slightly dehydrated. My mouth, eyes and skin stay very dry. Although my mouth stays dry, I rarely feel hungry or thirsty, but I know I need food and drink for survival. In the beginning I tried to force myself to drink more water, thinking I could force myself to stay hydrated. However, when my stomach overfills and I vomit it all back up, that water isn’t helping my body at all.
Vomiting not only leaves me dehydrated, but I also have issues with electrolyte imbalances. It’s difficult for me to take in enough food and drinks to keep my potassium, calcium and magnesium at normal levels. So now, I try to drink things such as Pedialyte, chicken broth, Powerade and Gatorade instead of water. Seeing as I don’t usually feel hunger or thirst, it’s a daily struggle to remind myself I have to eat a few bites and take a sip of something every hour or two throughout the day. For me, this self-care hydration challenge isn’t just a July challenge, it’s a lifelong challenge.
Over the past 10 to 15 years, I’ve made a lot of trips to the ER feeling sick, just to be told they couldn’t find anything except dehydration. I was happy that dehydration was the only problem, but going to the ER for IV fluids every couple of weeks gets old. About a year and a half ago, I started experiencing severe leg cramps and dizziness. My skin became so dry it held its shape like play-dough and I started noticing my fingers and toes were turning a gray color. For obvious reasons, I was concerned. I mentioned it to my GI motility doctor and was informed that dehydration and low electrolytes were to blame. So, for the past 17 months, I’ve been receiving a liter of fluids via a picc line in my arm. It’s kind of nice being able to run my own IV fluids at home in the comfort of my own bed.
For the past month, while working on a self-care challenge to stay hydrated, I’ve also been working toward weaning off the IV fluids, in hopes of getting the picc line taken out. Unfortunately, my gastroparesis and kidney stone didn’t help me out. I ended up with a urinary tract infection and a doctor ordering me to make sure I took my liter of fluids every day because I wasn’t going to get better without it.
While drinking water helps prevent dehydration and other ailments in the average person, it’s not always the solution. All my life I’ve listened to people tell me I just needed to drink more water. As I pointed out in the beginning of this article, and as was mentioned in the July challenge, the amount of water a person needs daily does vary from person to person depending on your health condition, physical activity and where you live. The way we get those fluids may vary also. While you may be fine drinking a large glass of ice cold water, some of us may need to be pumping it into a vein because our bodies can’t get it any other way. Others may be getting their food and liquid via a feeding tube. No matter how we get our fluids, the important thing is that we all listen to our bodies and we all stay hydrated, no matter what it takes!
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via fizkes.