Gastroparesis with severe symptoms!

Are you still having symptoms? I have gastroparersis, was diagnosed 2 years ago and for the most part my symptoms are manageable but I experienced very bad shortness of breath at night when trying to fall asleep. I’ll be up until late until my body is just too tired and I finally fall asleep but sometimes I’ll take a gasX and that helps? I’d love to know if you experience anything like this. It’s debilitating, I’ve seen cardiologist and pulmonologist and they all say everything is fine

Yes. I was an overachiever. Now I can barely walk upstairs without loosing my breath.
I have nonalcoholic cirrhosis, atrophied right kidney, ckd, ptsd, night terrors mdd, GAD, depression, hair loss still, serious cognitive impairment.

I was diagnosed with gastroparesis a year ago and nothing the doctor has told me to do helps. I’m naseaus, get burning pains in my stomach which radiates into my chest, feel weak 24 hours a day. Am desperate for help.

Well that sounds horrible @mimi8202 . I am so sorry. I am working through GI problems enough to understand how desperate you are, and others familiar with gastroparisis will no doubt have good thoughts. I do know troubleshooting our messes can be rough, so hang in there. It may not seem like it but you will make progress when you keep talking to your doctor. What has your doctor recommended, and what happened when you tried them?

I found information that may help you https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

@mimi8202
What bloodwork, testing, imaging, treatments and medications have you tried? Did you have a scintigraphy test? Have you been to a nutritionist/dietitian to help you modify diet? You may want to see a neurologist to see if anything can help stimulate your vagus nerve.

1. https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787
2. https://my.clevelandclinic.org/health/diseases/15522-gastroparesis
3. https://www.verywellhealth.com/what-is-gastroparesis-1741788
4. https://www.healthline.com/health/gastroparesis
5. https://www.yalemedicine.org/conditions/gastroparesis

Check out the below website and specifically go to the "program" tab. You will find a very detailed description of diet changes, medications for gastroparesis, managing stress and several other areas that can all help to calm gastroparesis (all for FREE). The author actually has gastroparesis and has authored two cooking books. I would also suggest you take a look at the other tabs on the website (blog, videos, podcast). Finally, I would strongly suggest you make sure that you have gastroparesis. The appropriate test is a Gastric Emptying Study (4hrs not 2hrs). If you had this done, I would make sure the meal given to you was correct. It should be a lowfat meal consisting of egg whites-2, 2 slices of toast (white bread), jam (no butter) and water (4oz).
https://www.livingwellwithgastroparesis.com/thriving-program
Good luck

Hi, @mimi8202 - welcome to Mayo Clinic Connect. So sorry to hear nothing has helped since your gastroparesis diagnosis. Tagging a few members who may have some tips and insights on what may help @bonez3861 @artemis1886 @marquis113 @mikejjb123 @rozy288 @ken82. @parrotlady also may have some thoughts for you.

What treatments have you tried so far, mimi8202?

I have had gastroparesis for years now. You will learn over time what foods your body tolerates, when to eat, and how much to eat- it gets better! Don’t panic!
One thing I find that is not medication and really helps is baking soda and water- one teaspoon , half a glass of water(especially at bedtime), and at other times if needed.

Same here trying juicing cut out all foods that are not easy to digest soda also ect.

I was diagnosed with gastroparesis back in 2005 and have had a few major flare ups not able to eat any food even baby food for almost two months with one of them spending time in the hospital on IVs to rest my stomach sipping nutrient liquids only.

There are medications to treat slow motility, I used Erthryomycin as needed during major flareups but tried to limit given reduced benefits with overuse. There are other meds and used to be a gastric stimulator implant not sure if still used and I didn’t need to go that route managing primarily via diet.

It’s very important to keep a daily food diary especially until you identify triggers. I tracked everything from food and drink to how I felt for symptoms to anything else I thought was important like how much sleep, other stressors etc. Also no two gastroparesis patients are the same so what works for one or triggers one may be different. Limit foods at first to help identify triggers easier and then introduce one at a time slowly.

I concur with another post, checking out Crystal Saltrelli in the link below. Her blogs, books, and advice were a life saver for me especially in 2005 when there wasn’t as much known or available but she has great tips on how to manage and things to try.

Also check out the site by Jackson Siegelbaum below. It’s a concept I use all the time depending on symptom flare-ups reflecting three tiers of diets driven by severity of symptoms. I’ve had many times where I dropped to liquids only and then stepped my way back up or down through the levels based on what food or drinks worked for me. When on liquids try to find ones with nutrients and sometimes you may have to mix with water to reduce strength of the content to make it tolerable. I used v8 peach mango and boost breeze.

Exercise is important especially after eating and can be tough when you aren’t feeling well and are weak. Sitting up for a while after meals, small walk around the house or exercising while sitting. Longer walk as tolerated. I slept in a recliner elevated with a heating pad on my tummy for years and ended up getting a sleep number adjustable bed. Being elevated also helped the bad reflux and burning. I recently went off my aciphex after decades due to other health issues and drink 2 tblsps up to three times a day of all natural whole leaf aloe vera juice.

It can be a tough journey, hopefully over time things improve for you. If you have a Wellness Way or integrated medicine doc near you, checking out natural supplements such as ginger, turmeric, etc may help. Crystal calls out some in her books. Praying you find options that are more tolerable and don’t flare symptoms. Good luck!
https://www.livingwellwithgastroparesis.com/
https://www.gicare.com/diets/gastroparesis-diet-for-delayed-stomach-emptying/