15 People With Gastroparesis Describe What It Feels Like

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For a person with gastroparesis, sitting down to a meal isn’t always the joyful experience it is for many others. Gastroparesis is a syndrome in which the stomach doesn’t contract and empty properly, causing chronic symptoms like nausea, abdominal pain, vomiting and bloating.

The pain and discomfort may not be easily understood by loved ones and acquaintances, so we asked our Mighty community with gastroparesis to describe what it really feels like. Living with gastroparesis isn’t easy, and a little empathy for its challenges would go a long way.

Here’s what they told us:

1. “It’s a daily battle of ‘Do I eat and be in pain, or do I not eat and be nauseous?’” — Em Hawkings

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2. “With my gastroparesis, I feel like throwing up 24/7. I get severely nauseous, and that feeling is always there.” — Heather Beldo

3. “Per my 3-year-old old: It feels ‘icky, my tummy feels angry at me. Food makes it angry.’ It breaks my heart.” — Jackie Henning

4. “It feels like I ate glass shards… the nausea is so bad I try to throw up to get some relief.” — Diane Doman

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5. “It comes in shifts: completely full, worst stomach flu ever, post-stomach-flu, satisfied and not hungry, hunger pains that lead to cramping and vomiting bile; those are the only feelings I have. That is without any food at all on total parenteral nutrition (TPN).” — Kate Sytsma

6. “I constantly feel like I have the stomach flu. The nausea is a constant, too, with waves of stomach cramps and pain.” — Jodi Duke

7. “It feels like there is a lake in my stomach. When I eat, I feel like I can’t breath because of the pressure pushing upwards.” — Patricia Chamberlain

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8. “It’s ‘I ate way to much food’ fullness, plus ‘I drank too much alcohol’ nausea and vomiting, plus what feels like a muscle cramp in your abdomen that you can’t stretch out. On the emotional side, it feels isolating and frustrating because society is so centered around food and eating. Not being able to eat can really mess with your head after awhile.” — Amanda Baldassari

9. “After I eat I feel like rocks are in my stomach, and the nausea is like having a never-ending stomach bug.” —  Joan Elizabeth

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10. “It feels like being a balloon that’s being filled with water… except the tap never turns off. The water keeps running, the balloon keeps getting bigger until it bursts. That happens every single day.” — Sabrina Cannella

11. “When I eat, it feels like I swallowed a brick of cement, like it sticks to my system for days. Then I have the pain, and it feels like someone is punching me in the gut over and over and over.” — Laura Vago

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12. “It feels like living in the Twilight Zone. You have doctors telling you to do one thing and your body telling you another, and you think it’s all in your head. Then a complication pops up… it’s never-ending.” — Taylor Schmitz

13. “It feels like your belly is a glass constantly full of water, and if you try to put anything else in the glass, it will overflow. Even just the smallest amounts of food can send you overflowing into nausea, pain, vomiting, etc.” — Grace Shockey

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14. “For me it’s constant pain, nausea, vomiting and abdominal bloating that makes me [look] pregnant. The pain is unbearable, [there is] nausea whether you eat or not. Go days without food. It’s hell!” — Rachel Price

15. “It’s like not knowing what to do and always having to deal with pain.” — Tammy Branch

If you have gastroparesis, how would you describe what it feels like? Let us know in the comments.

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When There’s No Manual for Navigating College With a Feeding Tube

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There are questions every girl asks herself before going to college — “Am I actually going to make friends?” “Does the freshman 15 really exist?” — answers to most of which can be found by reading Cosmopolitan or talking to older siblings. However, the summer before my freshman year I was forced to ask myself a different set of questions: “Will my roommates be annoyed with my feeding pump?” “How will my friends react when I tell them I throw everything up?” And the most important one, “Will guys still find me attractive with a feeding tube?” The summer before college is supposed to be one of the best, but mine was riddled with anxiety as I tried to dissect the answers to these questions.

For the past 10 and a half years, I have suffered from two gastroenterological conditions: rumination syndrome, a rare disorder characterized by the regurgitation of undigested food recently after being eaten, and gastroparesis, which means my stomach muscles are pretty much paralyzed, resulting in delayed gastric emptying. Due to these co-occurring illnesses, I am unable to keep food down, resulting in me being fed through a J-tube in my intestine and having a gastric pacer in my stomach to regulate my nervous system. I had always known going to college with a feeding tube could be a possibility, but I just assumed things would be solved by that time.

Going to school, I knew I had two options. I could either hide my illnesses or I could be open and upfront about them. I chose the latter. A few weeks before leaving for school, I was wearing a crop top that put the clear plastic tube on my stomach on full display, and my dad asked me if I was planning on wearing crop tops at school. I thought his question was ludicrous. My tube was part of me, so why would I hide it? Back at home my friends had become so desensitized to seeing my tube and scars that they often forgot about them. Part of me assumed this was how people at college would act.

It wasn’t.

When most freshmen want to blend in, I was standing out. It’s hard to ignore the girl with something “weird” on her stomach. One of my friends was dating a senior, and soon he and his friends began referring to me as “Feeding Tube Girl,” a nickname which was soon adopted by other groups. The nickname never really bugged me; I knew it was just shorthand, but I was annoyed by the attention it brought upon me.

For most situations in life there is some sort of manual you can consult when you need help, but there is no such manual that can prepare someone with a chronic illness for college. There is no article to look to when your feeding tube leaks all over a boy’s bed, or when you have to correct someone that the thing on your stomach is not an exotic belly piercing. There is no app that can feed you the perfect response for when a guy asks if you have puked yet or refuses to get you a drink because “you’re going to throw it up anyway.” No articles exist on Total Sorority Move that tell you the proper rush etiquette for turning down yummy snacks because you don’t want to leave to go to the bathroom, or how to dress appropriately to accommodate for your feeding tube.

Going to college with a chronic illness means having to navigate a new world without much guidance, but that doesn’t mean you have to do it alone. Although my friends cannot relate to my condition, they do their best to help me through it. Earlier this year I experienced problems with my pacer, resulting in me being hospitalized. My best friend drove me to the emergency room and stayed with me until 3 a.m. Once I was admitted, she came to visit every day and even had her mom come down to be with me during a procedure. Not only did my friends come visit me in the hospital, but they also remind me to use my feeding pump when I don’t want to, help me stick to my gastroparesis diet and help me avoid situations that could be harmful to my pacer.

When I went to college, I made the choice to be honest about my chronic illnesses — and even though I have had to deal with some ignorance, I could not imagine doing college any other way. My conditions are a part of me, and running away from them would be denying who I truly am. A part of college is about discovering who you are, and I am doing just that.

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Mady (second from left) and her friends at college.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Husband Who Didn’t Choose to Have a Wife With Chronic Illness

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I know this isn’t how you thought it would be. I know this isn’t how you envisioned our life together. When you married me, I know you didn’t picture this life for us. I know because I didn’t picture this life for us. I wish it was different, but I can’t even imagine what you wish. I can’t help but think you didn’t know what you were getting into when you married me. I can’t help but think you might have drawn the short end of the stick in our marriage. I can’t help but think I’m not the wife you pictured.

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As 21-year-old kids, we saw a bright future ahead of us. We talked about the places we would travel to, the jobs we would have, and we even picked out names for the three children we were going to have. There was so much that we wanted to do. Time was on our side. We were so young.

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Kristin and her husband on their wedding day

Yet here we are, 26 yet living like we are years beyond our age. I’m sure you didn’t picture taking care of me for weeks that turned into years or staying in with me every night I’m too sick to leave even the couch. I’m sure you didn’t picture your wife nearly bedridden for days on end. I’m sure you didn’t picture your life like this.

With just one word, our lives were changed forever. It wasn’t just my life that changed when I heard the word gastroparesis. Your life was changed, too. My heart breaks for the burden I have put on you — a burden that is enormous for someone of your age. At 24 years old, you became not just a husband, but a caretaker.

You don’t see it, but my heart aches every time I can’t meet your needs like a “normal” wife would. Because, you see, I’m not a “normal” wife, as I’m sure you’ve figured out by now. When I forget to prepare your lunch, I’m embarrassed that I can’t help you when you do so much for me. When I cancel a date or a family event, I’m afraid you will think I don’t care. When you eat cereal for dinner, I’m ashamed I can’t cook for you like other wives would.

I’m humiliated every day you come home and I’m still in my pajamas or haven’t even moved from the bed. Believe me, I don’t want you seeing me like this, but I don’t know what else to do. I am so weak. I have no energy. And I hurt so badly. Yet I want you to see me the way you used to and be proud to call me your wife.

Please know that when I lash out in anger, I’m not really angry with you. I’m not upset because you let the milk go bad or forgot to take out the trash. Believe me, it’s not really those things. I’m upset that I can’t be better for you. I’m upset that I’ve become a burden in every way — emotionally, physically, financially. And I’m upset that my body is failing
me at only 26. Please be patient with me. I’m trying. I’m adjusting. This is all new for me, too.

There will be days I don’t want to talk or seem distant. In those times, I just want you to hold me. Reach out your hand and grab mine. Do something so I know you’re still there.

There will be times I leave the room quickly and I’m sure you’re wondering why. This means the pain has reached a level I can no longer tolerate. I will probably be curled up on the bathroom floor with tears streaming down my face. When this happens, come find me. I need you most in these moments.

There will be times you don’t know what to do. I know you feel helpless. You’ve told me as much in the past. I don’t need you to have a solution. I just need you to be there for me. Give me a hug. Let me cry. Tell me everything will be OK even when neither of us really believes it. 

There will be times I’m angry about my diagnosis. Sometimes even the sight of food upsets me. You see, food controls me. I need it to survive yet it feels like a poison when I ingest it. Please understand that right now I don’t even want to be around food yet it surrounds me. Be patient with me as I fight this battle.

There will be times I feel guilty. I feel guilty every Sunday when you go to church alone as I lay curled up in bed. I feel guilty when you go to a family event without me. I feel guilty because I know I am a financial burden. But most of all, I feel guilty that I changed your life forever. Please tell me it’s not my fault I’m sick. Don’t ever stop telling me.

There will be times I feel unattractive. Every day I wake up to sunken eyes and a lifeless pallor. Remind me that you think I’m beautiful. Even when I’m wearing sweat pants with messy hair and a face sans makeup, remind me why you fell in love with me. I need to hear it.

There will be times you think I don’t notice all you do for me. I know this sickness consumes me and I’m sorry. Remember that I love you and appreciate you more than you could ever know.

I know you didn’t choose this, but you’re choosing it now. Even though on our wedding day you didn’t know I would become disabled, you know now. Yet you stayed with me. You could have left, but you chose to stay with me. For that, I am eternally grateful. This journey is going to be hard; I’m not going to lie. But it will be so much easier knowing that you’re by my side.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Realized My Daughter Doesn’t See My Chronic Illness

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This upcoming May, it will be eight years since my diagnosis of gastroparesis. Looking back, I never thought I would go through and experience the things I have over the past eight years. My experiences have made me grow as a person. Several years ago, when I was really struggling with my gastroparesis, I often wondered what would happen to me based on what the doctors told me. I never imagined I would be at peace with my health condition, be happily married and be a mom.

On Christmas Eve, our daughter turned 4 months old. It simply blows my mind. She has been such a blessing to us. Motherhood is amazing. Over the years, I had doubted and worried what life would be like if we were to have children. Physically would I be able to do it? Would I be able to be a present parent in my child’s life and be active and involved with them? What kind of life would we/I be able to give our child because of my disease? Questions like this quite often occupied my thoughts.

Several weeks ago, I noticed that my gastroparesis was acting up. I began experiencing stomach spasms. Almost immediately, I knew it was time to go to the hospital. I had always wondered what would my child think about seeing me in the hospital. What would they think and would it bother them? Would it affect our relationship? As I was being taken back into the procedure room, I thought about how my disease was taking me away from my family. Instead of spending time at home making memories, we were at the hospital. I have always feared I would miss out on some of our child’s life because of my disease, whether it be piano recitals, soccer games or simply reading them a book before bed.

When I woke up after the procedure, I was greeted by my husband and daughter. After I got my bearings, I asked to hold our daughter. I was a mess physically, between the grogginess and the stylish hospital gown accompanied by an IV. I learned an important lesson. Regardless of how I feel or look, whether I’m at home or in the hospital, I will be my child’s mother. My disease does not affect or change that. She sees me as “Mommy,” she doesn’t see me as a patient with a disease.

After realizing that day at the hospital that my daughter will always see me as “Mommy,” I have tried to remind myself to live in the present and enjoy each day with our daughter. I don’t have the promise that I will feel the same tomorrow as I do today. So what if my housework isn’t caught up? It can wait. It is all about prioritizing my energy and time. Why would I want to spend the majority of my energy cleaning the house, while reserving very little energy for my daughter? Wouldn’t it be better to spend the energy and time with her? She will only be this age once. I can’t get that time back. Honestly, she isn’t going to care if our house isn’t the cleanest one on the block.

Something else that has occupied my thoughts since that day is my appearance. Our society today focuses so much on appearance. Anyone who has a disease or illness knows it can take a toll on your physical appearance. Some days there isn’t enough eye cream in the world to take care of those dark circles under my eyes.

I used to focus and spend so much energy and time on my appearance. But our daughter does not care if my hair isn’t fixed or if my face is without makeup. To her, I am “Mommy,” regardless of what I look like.

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Jennifer and her daughter in the hospital

Follow this journey on My Life With GP.

The Mighty is asking its readers the following: Describe a time you saw your disability, disease or mental illness through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Thank-You Letter to a Friend Who Understands Chronic Illness

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When you have chronic illnesses, one of the most difficult aspects to deal with is feeling isolated from the “normal” world. When you find friends who understand, friends who are patient enough to take on all the extra obstacles just to stand by your side, it means more than words can express.

I met my friend Jessica on Instagram. Never would I have thought she would become one of the most important people in my life. She has chronic illnesses, too. We both have gastroparesis, so she understands how I feel on such a deeper level than most. A few months ago I was going through one of the hardest times in my life, physically and emotionally. My health was deteriorating and I was feeling so down. Then I get a phone call one afternoon from Jess. She surprised me with the news that she was taking me to a Taylor Swift concert for my birthday. I literally started jumping up and down in bed (T. Swift is my absolute fav), but then I wondered how we would do this. At the time I was requiring so much medical equipment and assistance I didn’t see how it would be possible. She knew how badly I needed the escape. Challenge accepted.

Erika and Jessica in the hospital

Not many people find friendships like we have in their lifetimes.

This is a thank you to Jess:

Thank you for driving nine hours straight to come pick me up since I couldn’t drive.

Thank you for hauling the ridiculous amount of supplies I required around with us.

Thank you for wheeling me around Tiger Stadium (with its huge death ramps) and moving like 10 times because they don’t know where to put people in wheelchairs.

Thank you for holding my hand when I had a seizure.

Thank you for holding my feeding tube in my stomach while I put my earrings in.

Thank you for sitting with me in the emergency room for hours and making me laugh (even though it hurt).

Sorry about that surprise ER trip, by the way (who knew shaking it off could make your feeding tube fall out?).

Thank you for appreciating naps as much as I do, if not more.

Thank you for understanding.

Thank you for honest late-night talks.

Thank you for being so patient.

Thank you for everything.

Those two words just aren’t enough.

I love you, Jess.

Erika (right) and Jessica at the Taylor Swift concert

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The New Year's Resolution That's Better Than 'Lose Weight'

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A lot of people are making resolutions for the new year. One of the most popular ones every year is to lose weight. If you’re doing it for your health, cool! But if you’re only doing it because you dislike your body, here’s why I believe it’s not a good idea.

Three years ago, my body would have never been called “perfect.” I was on the heavy end of what society would consider the normal weight range for my height. But I was healthy. I enjoyed eating well and worked out often just because it made me feel good. I felt full of life and energy. I may have had some extra weight on my bones, but I was in the best shape of my life. I had been honored with my second-degree black belt and was working hard toward my third.

After working hard for so many years to get in the shape I was and to maintain my fitness, I was happy. No, my body wasn’t my idea of “perfect” and I can tell you straight up that I didn’t love it all the time, but I liked it. I liked what it could do. I liked that it had the strength to help me through the most grueling workouts. I liked that I could feed it healthy food most of the time and enjoy some treats here and there. I liked that I had the confidence to wear a bikini during the summer months regardless of my weight. I liked it, but I didn’t always love it.

Kathleen's photo caption: "Me in my prime, the day I received my 2nd degree black belt."
Kathleen’s photo caption: “Me in my prime, the day I received my 2nd degree black belt.”

When I got sick, my body changed rapidly. I was dropping weight like mad. Forty-five pounds later, I found myself in a body I didn’t recognize. The weight loss wasn’t my choice. The choice had been taken completely out of my hands. Gastroparesis is a monster disease that doesn’t discriminate. It can affect anyone. Not-so-luckily, I ended up with it.

At my lowest weight, according to society’s views of our bodies, I should have been happy. Without knowing the reason why I reached such a low weight, some people innocently complimented me on my newfound figure, wishing they could lose weight like me. Just like the models you see walking down the runway, my hip and collar bones jutted out, my stomach was flat and my legs were rail thin with my thighs nowhere near touching. But I wasn’t happy.

I’ve had people tell me jokingly that they wish they could have gastroparesis for a short period of time so they could lose some weight. But it didn’t just steal away pounds from me. I ended up severely dehydrated and with malnutrition. My hair was falling out it in clumps. It took away my ability to enjoy food like I used to. It stole all my strength, leaving me dependent on a wheelchair for months. It took away my ability to go to university. It left me with no energy to do the things I enjoyed the most.

I may have had what some considered the “ideal” body, but I hated it.

Honestly, I didn’t love my body all the time when I was healthy, either. Sometimes it came naturally and sometimes it felt like I was fighting an uphill battle. But despite what some people like to think, weight loss didn’t fix that. It can’t. We’re constantly being told that thin is beautiful, but healthy is what’s beautiful. Society’s ideal body, for me, wasn’t healthy.

So I’m on a weight gain mission. Seeing the number going up on the scale isn’t always easy, but I’m thankful for what that increase means. It means more freedom physically as I improve my strength and build muscle. It means protection for my body. It means I’m getting the nutrition I need. It means even if the monster called gastroparesis is still in my life, my body is at a much healthier weight.

Kathleen's photo caption: "Working towards a healthier weight!"
Kathleen’s photo caption: “Working towards a healthier weight!”

So, what I’m trying to say is that if you don’t love your body now, don’t be convinced that weight loss will make that happen because it’s not a magical cure for a bad body image. Loving yourself is something you need to work on doing at any weight you find yourself.

Even if you can’t appreciate what you see in the mirror, reflect on the amazing things your body does for you every day. It lets you wake up every day ready for new experiences. It lets you learn and live and improve. It lets you enjoy time with family and friends. It lets you grow as a person. It keeps your heart breathing and your lungs expanding. It keeps you alive.

It’s so easy to take all the little things our bodies do for us for granted when we’re all so focused on what our body looks like, but all these little things can be taken away suddenly and without warning. Appreciate them.

Follow this journey on Green Eggs and Spoons.

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