Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!

Joan

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kamama94 | @kamama94 | Jan 28, 2023

In reply to @lisawn215 "Hi, I’m brand new here— looking to connect/ find support with others dealing with GASTROPARESIS. I’ve..." + (show)

@lisawn215, I too have other chronic conditions along with gastroparesis - renal disease and diabetes and depression and anxiety. Managing the conflicting diets for kidney disease and for diabetes and for gastro is quite the challenge.

For instance, well-cooked spinach is ok on a gastro diet but it tends to form oxalates which may contribute to kidney stones and renal patients may not tolerate the potassium punch that spinach carries.

This kind of yes/no about certain foods makes it difficult to get appropriate nutrition.

kamama94 | @kamama94 | Jan 28, 2023

Has anyone else heard or read that you should not re-heat cooked spinach because re-heating produces nitrites which are carcinogenic?

lisawn215 | @lisawn215 | Jan 28, 2023

In reply to @gsheets "I was diagnosed in Dec and I also have anxiety. Each one makes the othet worse." + (show)

It sure does! I am really struggling with the mental health piece…so much to wrap my head around.

lisawn215 | @lisawn215 | Jan 28, 2023

In reply to @brendaharvey "I suffered with Gastroparesis for over 3 years. The diet helped a little. Then the physical..." + (show)

Thank you so much for sharing! I’m totally overwhelmed right now with information & emotions. It just seems so hopeless. I thought my RA was a challenge, huh! This takes it to a whole different level 😤😖 Am I reading into it that your quality of life is decent now? And do you still follow “the diet” ?

ken82 | @ken82 | Jan 28, 2023

In reply to @gsheets "I was diagnosed in Dec and I also have anxiety. Each one makes the othet worse." + (show)

@gsheets when at Mayo MN my GI doctor prescribed Mirtazapine for me... as he said to help you know you have to eat.. he also prescribed a daily multi -vitamin.. ,nexium.. the nutritionist helped with techniques of eating.. small portions.. eaten slowly..chewing very well.. use your blender.. frequent snacking..

lisawn215 | @lisawn215 | Jan 28, 2023

In reply to @brendaharvey "I suffered with Gastroparesis for over 3 years. The diet helped a little. Then the physical..." + (show)

Hi again, could you please share more about what you did for physical therapy? Thanks !

denisef | @denisef | Jan 29, 2023

In reply to @brendaharvey "I suffered with Gastroparesis for over 3 years. The diet helped a little. Then the physical..." + (show)

Brenda:
i had communicated with you via this site a few weeks ago - soon after you had the pyloroplasty. Can you tell me in what way your symptoms have improved status post the pyloroplasty. i.e. where you throwing up prior and are not now, did you have pain prior and none now - were you limited as to WHEN/how much you could eat and are not now etc. i am considering it. My main symptoms are gas/distension/pain/slight nausea/and i don't eat ANYTHING solid after 2 pm otherwise i cannot lay down to sleep. As it is that is the worst part of it - laying down with "food from the day" in my stomach - gas pain wakes me up throughout the night.. Thanks Denise

cherip | @cherip | Jan 29, 2023

In reply to @kamama94 "@lisawn215, I too have other chronic conditions along with gastroparesis - renal disease and diabetes and..." + (show)

I've found GP nutrition information to be sorely lacking. I've just about given up eating solid food, since I have gut pain for days after solid food.

GP is just another nail in the coffin for me. I can't find good help and it all feels kind of useless.

cherip | @cherip | Jan 29, 2023

A doctor that listens - actually listens- is like a fairy tale. I always have to double check every frug to make sure they aren't a out to kill me or, worse, make my symptoms more severe.

cherip | @cherip | Jan 29, 2023

In reply to @kamama94 "Has anyone else heard or read that you should not re-heat cooked spinach because re-heating produces..." + (show)

I've never heard that, but food you can eat is worth cancer, for me anyway. The GP diagnosis has destroyed my old love of cooking healthy food. I dont even want to eat anymore. Not worth it.

I worry about malnutrition, bit since both the dietician and the nutritionist I saw didn't help much. It's too overwhelming, every list of what to or not to eat is different...

I'm shocked people don't just wither away from this disease. I'm afraid that I am slowly dying from GP and the associated malnutrition. I have congestive heart failure, so GP pretty much feels like a death sentance "enhancer."

I have trouble caring. I want to care, but I don't have the strength to fly solo anymore.