Living with Gastroparesis
March 13, 2020
First of all, what is Gastroparesis? To dumb down Gastroparesis, it is a very rare condition when the stomach cannot empty food normally; this leads to things like nausea, vomiting, heartburn, and other symptoms. Food can last in your stomach for days growing harmful bacteria or create a bezoar. The leading cause of Gastroparesis is diabetes, that causes damage to the vagus nerve. The vagus nerve is what helps to empty your stomach and keeps food moving through the intestines. Here is an excellent article on what Gastroparesis is and the symptoms of it.
What is it like living with Gastroparesis? Well, thankfully, I don't have it, but my girlfriend, Ashley who is only 21 years old, has suffered through it for the past few years. She has Idiopathic Gastroparesis, which means she doesn't know why she has the condition. She doesn't have diabetes and didn't have any surgeries that resulted in damaging her vagus nerve. We've been dating/living together for almost eight months since the writing of this post, and I've been able to view first hand the complications that come with this condition.
The biggest thing that should be stated with Gastroparesis is diet. Your diet changes considerably with this condition. You can't have any fatty foods or anything with a significant amount of fiber; this means she can't have food like beef, pork, raw vegetables, fatty fish like tuna or salmon. If she has ground turkey, it has to be very lean, as lean as you can get from your supermarket or local butcher. So we have a lot of turkey, chicken, rice, and ground bison, which is something surprising that she can eat.
With these restrictions, there are even more restrictions. There are tastes and smells that really can set off her nausea and vomiting. Red sauce, marinara sauce, is the main trigger for her. She can't be in the same room as foods like pizza, red pasta sauce, anything with that is a huge no-go for her; this makes things like parties with friends difficult since pizza is such an easy and available food for big groups.
Let me take you through a day in the life of someone with Gastroparesis. Waking up every morning, I don't know how she is going to be that day. Another symptom is exhaustion from not being able to eat as much as she should be able to, so sleeping in is normal for her. I ask her almost every morning to see how she is doing. The severity of her nausea varies from day to day. Some days, her nausea is very tolerable, and she can eat food without worrying, other days, she has trouble keeping down water. Most days, she can only eat one meal and can snack on food for the rest of the day. She doesn't normally eat breakfast, so I usually just cook for myself. The days she does feel good, we have things like bagels, or I'll make pancakes for the two of us.
Lunch she usually just snacks, apple sauce with cinnamon is one of her favorites. She is also in love with grilled cheese sandwiches that work for either dinner or lunch. Turkey deli meat on sandwiches is another lunch item she likes to eat on good days. Snacks are chips, ice cream, muffins, things like that.
Dinner is the meal is most consistently eats. We have things like mac and cheese, grilled cheese, chicken noodle soup are the main ones. We've learned different ways to change common foods into something she can eat. Since she can't have beef for things like burgers, we do turkey or bison burgers. She used to love beef stroganoff with rice, but we've substituted the beef for ground bison and do it that way. It's a bit expensive, but it helps add variety to her diet and helps her to feel just that much more normal.
Now that we've gone through meals let's talk about activities. Before Gastroparesis, she was a vast, outdoors person. Since we live in Southern Washington State, there are tons of places to go hiking with your dog. We have a couple of dogs. Kenai is Ashley's emotional support dog. He is a rescue German Shepard mix and is a total sweetheart. My dog is a Jack Russel Terrier named Daffodil and is a total cuddle bug.
While I'm making breakfast, the dogs are cuddling with her in the bed. During the summers, she would be hiking almost once a week with Kenai. But now, dealing with nausea and exhaustion, she has to limit that, and we've gone hiking only a couple times the past eight months. Taking the dogs to the dog park gets difficult for the hard days where getting up and moving around makes her nauseous. Since she can't eat enough food, keeping on bodyweight gets complicated, so she can't work out like she would like to.
By now, it's pretty evident that she loves animals. Ashley used to work as an assistant at a veterinary clinic and now works at an animal holistic retail store called Mud Bay. She loves working there, and all of her coworkers and her boss have helped her out so much with her condition. They take over shifts that she can't work because she is having a bad day. They pick up extra shifts or just help her in any way that Ashley needs while working. She could not be at a better place or have better people around her that help her in her situation. She would like to go back to college to become an animal nutritionist, once we get this Gastroparesis a bit more under control, that is the goal.
Ever since being diagnosed with Gastroparesis, Ashley's life has been severely restricted, and trying to get her back to healthy everyday life has been difficult. With it being such a rare condition, there have been very few tests that have been developed to help deal with Gastroparesis. There is no known cure for this condition as of this date, so the only way to live with this condition is just to try and deal with the symptoms. There are several ways to deal with the symptoms, some better than others, such as an NJ tube or the more known feeding tube. Another way is getting a gastric neurostimulator.
Let's talk about the NJ tube. The NJ tube, Nasojejunal tube, is a tube that runs from your nose, all the way down through your stomach, straight to the intestines. Where this works, it provides several complications. The first issue is that, well, it's a lot more visible, and you have to deal with the questions and the stares. The other problem with a tube like this is that it doesn't always stay in place. The tube can get tangled on itself or back up and get stuck in the stomach instead of staying in the intestine. That would mean the food or medicine is not getting to where it needs to go. The patient would have to go back to the doctor to get this fixed. You can see how this wouldn't be a preferred way to go.
The other option would be to undergo surgery and get the gastric neurostimulator. This is used with more extreme cases and happens to be the route that my girlfriend took. For those that don't know what this is, it is essentially a pacemaker but for your stomach. It does the same thing that a stimulator does for one's heart; it just shocks the stomach. Here is an article by Metronic that is the maker of these pacemakers.
The way that we went about getting the neurostimulator was at the suggestion of her specialist doctor. We met with her surgeon back in October of 2019 to speak with her and see if this was the route that the surgeon also thought was a good idea. When both the specialist and the surgeon agreed that this was the best option for her, we set up the operation date. Midway through November, Ashley went under the knife and got the gastric neurostimulator placed laparoscopically. Before continuing, I want to address the side effects that can happen. One issue that can occur with skinnier patients is that the leads from the stimulator to the stomach can shock you because there isn't enough fat on the person to absorb the electricity. Ashley is one such patient. After waking up from the surgery and the anesthetics from the surgery wore off, she was in extreme pain, and no amount of drugs would fix the issue. For the next four hours, she was in severe pain to the point that she sounded like she was going through labor. At around 10:30 pm, she finally was able to fall asleep and slept through most of the night.
We went home the following day, which was a three-hour drive from Seattle Washington back down to Vancouver Washington. The following week was terrible. No amount of medication would keep the pain at bay. We didn't sleep the following week and talked with many different doctors to try and figure out what the situation was. We finally drove back up to Seattle to get the device turned off to see if that would help with the pain, and it immediately went away. For the next month, we had the device turned off until she went under another laparoscopic surgery in December of 2019 to get her leads lined with more fat to deal with the shocking.
While this did help immensely compared to the first surgery, but it wasn't enough. Ashley's movement was still restricted because, in certain positions, she could feel the shocking more, laying on her side, and stretching would set it off. She was still dealing with a decent amount of pain from day to day. Ashley's specialist doctor wanted to try and have her push through the pain and try to eat to get more fat on her, which we tried for the following two months. After trying this for two months, it didn't help at all. So the decision was made to undergo another surgery, this time an open surgery which is much less common. This time, the leads were replaced with brand new ones, they went through her abdominal wall in a different spot, and they each got their own hole through the abdominal wall.
This is where we are at in this journey. As I write this, Ashley is recovering at Virginia Mason Hospital in Seattle. So far, she is doing better pain wise compared to the last couple of surgeries, but only time will tell how much better she is doing. But now we have run into another issue, the Corona Virus that is breaking out here in Seattle. The hospital is in lockdown, and visitors are forbidden for surgical patients. While I agree that keeping these surgery patients as safe as possible is in the best interests of everyone, I hate that I can't be there for her. It kills me that she is stuck alone in a recovery room with just a tv and her phone to keep her entertained. We talk through Snapchat's video chat to try and entertain her and keep her hopes up.
Throughout this whole process, Ashley has been such a strong person. It takes a lot of courage and strength to be able to push through the day in and day out. To get up every morning and try her best to go to work as often as possible. Even fighting through little things such as eating when your body tells you it doesn't want to. I consider myself lucky to know her and to be apart of her life.
With gastroparesis being such a rare condition, very few know about it. I didn't know about it until I started dating Ashley. To be able to help spread the news and help out in any way possible, August is Gastroparesis Awareness month. Please go checkout the site to learn more.