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

@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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Mine came from a C-diff infection and the Microscopic colitis/Collagenous

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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Just been diagnosed with gastroparesis and doing the diet and still a wait to see gi again havent been told much about it …

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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Hello @hymelchristy, and welcome to Connect,

You may notice that I moved your discussion and combined it with this existing discussion on gastroparesis. I did this because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you may be experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

May I ask if you would share a few more details? What type of diet are you following? What symptoms are you experiencing? Sincerely look forward to getting to know you.

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@ohimsick

I have gastroparesis not caused from diabetes. I also have lower extremity neuropathy. If anyone like myself is having chronic nausea with no relief go look up (Marinol.) It is synthetic THC and it works very well. I has a little "pot like" buzz the first time i took it and thankfully that went away. It was originally used on nausea caused from chemotherapy.

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I hope to have my doctor presrcibe a neuropathy test for me. Due to a friend having neuropathy, I looked up on the Mayo site to learn more about neuropathy. It can cause digestive problems (which I have and they call it IBS and acid reflux); and sleep problems (which I have); extreme touch sensitivity (a lumped up wrinkle in my sheets can cause pain and wake me up); and rheumatoid arthritis pain – mine is osteo-arthritis). I need to get this checked out to see if I've been misdiagnosed.

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@pendragonart

a friend has it and doesn’t have diabetes. she is on reglan. she already had depression before starting it. I am trying to help with diet etc.

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Yes i do

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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@darlia I have gastroparesis caused by chronic pancreatitis and the inability of my pancreas to produce digestive enzymes. I take enzyme replacements, but they only make things a little more tolerable and add in my opiates for pain an d I usually take two different meds for constipation daily and at times that is not enough to keep things moving. Does this help any? Is there any med you take that could b e a contributing factor?

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I was just diagnosed with “lazy stomach” as the doctor called it. I refuse to take Reglan tho they all keep pushing me to. Mostly, I just live with it, like most of my other woes. A dietitian told me that lemon or vinegar helps taken before meals but I haven’t really tried that. I sometimes take warm lemon water in the morning but to loosen phlegm.

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@nanny23

How did you find that out?

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@nanny23.. greetings! I stand corrected.. my neurologist told me that the Neuropathy I have IS referred to as Autoimmune Peripheral Neuropathy.
Darlia

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@katmandoo

I have idiopathic gastroparesis and am pre diabetic.

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You should get tested for the FGFR3 antibody

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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It had been determined that since I have the rare FGFR3 ANTIBODY which is the cause of the Peripheral Neuropathy, it is also the cause of the Gastroparesis since this is caused by the nerves not working properly in the stomach.

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@aishia

Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

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I have similar reactions to yours. I get allergic to thing the more I use them. Sometimes I can get by eating a certain food and other times that same food can bother me. Most of the "healthy" foods I am told to eat are either worsens one of my other conditions or I am allergic to them. It's so hard to know what to do or what to eat. You're right that there is no giving up so I keep trying.

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I tried apple vinegar and it stung in my stomach.

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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@donnamarie

Hello Donna:

How fortunate that you got to a hospital system that was on top of your condition and gave you a diagnosis!

Could you tell us more about the type of surgery the doctor has recommended?

I look forward to hearing from you again.

Teresa

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@nanny23

How did you find that out?

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Thanks for the info appreciate it

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