4 Strategies That Ease My Gastroparesis Symptoms
Date night with my husband resulted in mounds of clothing piling up on the bench in my closet. I was having a meltdown similar to that of a teenage girl with a zit on prom night. Nothing fit. I couldn’t zip up skirts or button pants. My stomach had suddenly protruded out like I was seven months pregnant.
This was my first symptom of gastroparesis, a fancy word that simply means the stomach muscles are paralyzed and cannot empty food normally.
The doctors initially called it bloating. Ha! Bloating? No, sir! Bloating is when you’ve eaten a large meal or are retaining extra water. This was an alien baby that would grow inside my belly immediately after eating or drinking anything.
I had to keep two wardrobes to deal with my damaged stomach and its delayed emptying. I had my morning attire for when my waist was normal. My second set was reserved for my “bloated” stomach that would swell two full sizes later in the day.
As scleroderma progresses, so does the damage to my gastrointestinal tract, including the development of gastroparesis. Without any treatments for my severe diagnosis, I’ve had to come up with personal remedies. Ultimately, it boils down to listening to my body when it’s screaming at me.
1. Chew, chew, chew
The smaller the food particles, the easier it is for solids to move through the digestive system. A healthy gut could use that extra work, but a broken one can’t process anything very well. Although doctors tell me to avoid them, I still enjoy things like raw veggies. Because they are high in fiber, I carefully pulverize every morsel before swallowing. Think puréed baby food. When I baby my tummy, she’s happy with me. It takes practice, but taking smaller bites and chewing thoroughly ease many of my symptoms.
2. Only tiny amounts at a time
It helps me to think of my stomach as a finicky toilet with bad plumbing — you know, the kind that backs up and requires an embarrassing session with the plunger. The more I put in, the more likely it is to back up.
Doctors gave me a tip to help get food down my esophagus: Add water before swallowing every bite. There are three reasons I stopped doing this: I found it nasty to water down my food, I would get too full before I could eat enough to be nourished, and too much liquid with food guarantees severe bouts of reflux and/or vomiting.
I find it more helpful to limit the amount I drink with meals and to stop eating before I’m full. Since I have no muscle in my throat, I sometimes need water to get food all the way down. So, I save those sips. As for the amount I eat in one session, think of that toilet and plunger — small amounts flush down easier!
3. Choose your food wisely
For many years, I spent countless hours rocking back and forth in the bathroom, shaking with cold sweats and cramps comparable to appendicitis (been there, done that). I listened to the doctors and followed the gastroparesis diet. I also had allergy and sensitivity testing done. While doctors said I’m mildly sensitive to everything (my husband would agree), they also told me I shouldn’t have adverse reactions to any of the foods in the recommended diet.
I’d had enough, so I started an elimination diet and kept a journal. I began with plain, boiled potatoes and slowly added new foods. I diligently recorded every food I ate and symptom I experienced. It took close to a month, but I figured out which foods caused me the most suffering. Dairy and oil are my enemies.
4. Stand up and stretch
To get the food to enter my stomach, I sometimes have to arch my back while eating. I can feel it lodged in there until I release it with a slight backbend. The only downside is the inevitable garbled burp that comes up at the same time. It’s the sound of the drain being unclogged.
Gravity and exercise are also my best friends now. Together, these two blessings help my broken stomach move food into my intestines. If I sit down right after a meal, the digestive process is paused completely. The longer it sits, the more bloated and nauseous I become.
I can’t even think about lying down before everything clears out of my tummy. Unless I want to once again taste everything I worked so hard to get down, I have to stay upright for at least five hours after every meal.
It’s not easy living with gastroparesis. Listen to your body and find ways to ease your suffering. A food diary can be very helpful. While the disease can’t be cured, you can still find ways to improve your quality of life.
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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Sonja
Very good article again Lisa! best greetings, Sonja
Mari Gray
Sadly there is very little being done to find a cure. the bulk of the research seems to be about more & better drugs. big pharma must be rubbing their hands all the way to the bank. I have an aperistaltic esophagus, gastropheresis, diverticular disease & IBS. If there is one thing a SSc gut doesn't need, its additional fibre, it will completely exacerbate the stomach emptying. I gave up on food three years ago and it was the best move ever. Why put an already challenged system through even more challenges when it clearly can't cope. It vastly reduced the refluxing & I would urge other gastropheresis diagnosed patients to give a liquid diet careful consideration.
Lorri Maynard
Thank you for addressing this issue and giving information on what works for you. This is something so many of us struggle with daily.
Doralee Thrasher
Excellent article. I could have written Every. Single. Word! My severe gastroparesis has forced me into the hospital too many times to count. I practice most of your tips and have also found that dairy is really hard on me. But I’m curious about your aversion to oil. Is it a specific type or basically any type? I try to stick with olive oil when I use oil, but like you, anything can trigger an “episode”. I selfishly feel some comfort in knowing there is someone else who totally understands what this disease can do to a person. Thank you so much for sharing your story!
Lisa Weber
It's definitely not selfish, Doralee! Being understood and not being alone are basic human needs. All oils make me feel bloated and heaving. It seems to slow digestion too. If I absolutely have to use oil, I use coconut or olive oil- only because it's what I've been taught (healthier). Best wishes to you!
DEBBIE Forth
Thanks for sharing. I know the feeling.
Food is the medicine … sending love.
Tobey Schwartz
Great practical article. I will put these steps to use.
mjskitchen
Thank you for this article. Great information and it's great to see that it is working for you. Your first three steps are pretty much routine for me but I really should move around more after I eat. I do find that I have to exercise before I eat but then I'm pretty stationary afterwards. I was not aware of the gastroparsis diet. None of my doctors have ever recommended it. In fact, my GI doctor always tells me to add more fiber to my diet. And as you probably know, too much fiber causes some very nasty problems. So I'm going to check out the diet and keep a diary as you suggested. Thanks!
Lisa Weber
I think the hardest part about this disease is not having a standard procedure for dealing with it! Sometimes, the patients can help when the doctors are still learning. I find lots of helpful tips through support groups on Facebook.
Margitta Hapke
Oh Lisa, I just had a good cry for you and every body else, who suffers through this. Healthy ppl cannot understand even part of it. Best foods for me right now: German rye bread witout additives, potatoes and bananas. Every thing else depends on the mood of my stomach. Having severe Gerd is enough of a desease, we should not have to cope with all the other parts of ssc, not fair......... sending you many thanks for the article and more prayers for al of us.
Lisa Weber
Margitta, you are spot on. It is just too much to deal with! Potatoes are my go to- they always play nice in my stomach. Praying for all of us!
Ellie Gartin
Thank you for sharing this, I suffer from this and it's a living nightmare for me...
Doralee Thrashet
Thank you, Lisa. Your story speaks to me on so many levels. I appreciate you!
Wendy OSteen
Prayer for all of us suffering these disease.
I also have all the problems you discussed. However I was diagnosed with gastroparesis in 2013, 1 year after symptoms started. Only told to eat 6 am meals per day. Learned all other tricks on my own.
For the last 3 1/2 years rash, sores, & scares head to toe. Joint pain, muscle pain, cramps in legs, fatigue & extreme weakness.
Frist was 3 types of toxic mold in our house. I was sure symptoms from mold exposure. I was pushed from one doctor to another. All of them looked at me like I was from outer space. Out of 5 dermatologist only one actually touched my skin and 3 only touched areas they biopsied. One diagnosed me with delusional parasitosis.
I found new rheumatologist that review my entire 3 yrs of records, lab, scans & doctors notes. Took my family history. Looked at pictures of my skin I had. (No other doctor would) examined me, ordered lab and on 2nd visit by had diagnosis of scleroderma.
I have had GI symptoms of pseudo blockage for 3 weeks and I'm afraid to go to ER. New insurance so no new doctors yet. I am afraid they will blow me off like all the other doctors. I would cry and have a complete meltdown.
I have been a nurse for 40 years, and never been treated so badly in my life by doctors I have worked with and for, as I have the last 3 1/2 years. I will never work in the medical field again as long as I live.
Even as bad as these problems are, I find comfort in this type of forum. I have felt all alone for sooo long. Can't count the number of friends I have lost. People I have done so much for no longer want to here how I am. It's sad when you have no control over your systems. I truly feel my grandchildren understand more than most adults. Of course they see me more often and see what my lifw has become.
Thank you
Elizabeth Levy
Thank you so much for sharing, Lisa!
I'm so glad you have found some relief for your gastroparesis. I wish I could find some, but hopefully your suggestions will help others.
Monica Clark
Thank you for telling us your story. I was just diagnosed with systemic scleroderma 3 months ago. Dealing with swollen fingers and so much stiffness. Everywhere! Stomach stays bloated. I look 7 months pregnant. Went to my family dr with extreme pain in my right side. He sent me for an xray and said I was constipated and had a uti. To increase my fiber. I cant handle fiber. I'm miserable at this point. Gonna try a food diary! Prayers for us all 🙏♥️
Lisa Weber
I hope the food diary helps you! Fiber destroys me- but some people do well with it. One size doesn't fit all with this disease. Best wishes to you. I'm praying we all find the relief we need to keep fighting.
Gaynell Harding
Thank you Lisa for information, I can relate, although I was diagnosed with limited scleroderma. I seem to have alot of symptoms like systemic scleroderma. Eating is not my friend, I actually chose not to eat sometimes, I have discovered some foods that I dare not because of the after effects. I read the scleroderma news regularly in hopes for a cure or at least medicine to help with the symptoms. I feel everybody's pain that replied to your article and will pray for everyone diagnosed with this hateful condition,🙏🧤❤