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Looking for answers to help with gastroparesis
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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@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?
Yes i do
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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1 ReactionHello @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.
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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2 ReactionsI have written in about all my situations that give me awake and asleep problems. I have seen a urologist and gastroenterologist and tried medications. I also had surgery by an ear-nose-throat doctor. I have hiatal hernaia, acid reflux, IBS, Hemerroids, urinary urgency, anxiety, osteoarthritis. Whenever I list all this stuff, I feel sorry for myself so I hate to say it. It makes me face my reality. Newer medications for IBS and urinary urgency are quite expensive. They didn't help that much so for a few days I am trying life without them. I have gotten meat stuck in my esphagus. I believe that was the nutracker esophagus you were describing. I have glaucoma too.
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2 ReactionsHello @aishia,
I'd like to welcome you, and thank you for reaching out to Mayo Clinic Connect. We're so glad you've joined. Mayo Clinic doctors diagnose and treat almost 1,600 people with gastroparesis every year, and Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation by U.S. News & World Report.
Here's some information about gastroparesis and Mayo Clinic's care approach: https://www.mayoclinic.org/diseases-conditions/gastroparesis/care-at-mayo-clinic/mac-20355796
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
Might I suggest you also call Mayo Clinic's Patient Account Services? The number to call is 800-660-4582
For further information check out this resource about billing and insurance from Mayo Clinic: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
I'd also like to introduce you to @katmandoo who has a gastric pacemaker due to idiopathic gastroparesis, and who will be able to share some insights that might help you.
You may also wish to view this conversation on Connect, "Does anyone here have or heard of nutcracker esophagus?" https://connect.mayoclinic.org/discussion/does-anyone-here-have-or-heard-of-nutcracker-esophagus/, where @blackoutthesun @maureercria have shared their experiences with nutcracker esophagus, also referred to as jackhammer esophagus.
@aishia, how are you managing your symptoms day-to-day?
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1 ReactionHello 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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4 ReactionsHello All, I'm new to this thread but I must say so far I ha e read nothing but positive and encouraging comments. I was diagnosed with Gastroparessis in 2014 and I'm in Raleigh, NC. I have tried many medicines including Reglan, Erythromycin, etc. I currently rotate between Zofran, Benadryl, and Phenergan for nausea. I was recently diagnosed with Jackhammer Esophagus and I'm waiting on my appointment for Botox injections... I have been looking to get the Pacemaker but no doctors here in NC actually performs the procedure. I've lost weight, had to have a port placed due to my veins not being accessible due to dehydration from vomiting so much in the beginning. I do have a few questions, feedback is greatly appreciated.
Does anyone know of any GI specialist that will do the initial consult over the phone?
Has anyone had their insurance cover traveling cost to go out if state to see another specialist or to have a procedure done such as the Pacemaker or G-Poem surgery?
Could someone please provide some of their best GI or Gastroparesis specialist?
I'm at the point where if I need to travel for a resolution I will. My last gastric emptying study was in 2014 should I request another one or can doctor's use the previous test?
Thank you all in advance for your feedback.
***Aetna is my current health insurance***
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2 ReactionsI got gastroparesis after hiatal hernia repair surgery. I believe the vagus nerve was damaged during surgery. I understand that acupunture can be helpful. I haven't tried it but I plan to. I still struggle every day with nausea and gas pains. Some days are better than others. I take Zolfran for nausea and sometimes it works quite well and other times not so much.
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