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Anyone diagnosed 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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I live in Ripley New York, close to Erie PA. I would drive to the Mayo Clinic, if it comes to that.
Thank you,
Darlene
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2 Reactions@darlenemeeder You have a Great place to start that is, The Cleveland Clinic near you.. Just down the road a short drive.. they have virtual visits too.. https://my.clevelandclinic.org/departments/digestive/depts... the link for their website.. Give it a try today.. A friend of mine was recently treated there for Essential Tremor.. where they did brain surgery with a multi-million dollar machine not cutting into the brain... Miracle time.. Good luck..
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2 ReactionsThank you, Ken
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2 ReactionsI am in Florida. My daughter on the west coast has gastroparesis. Just got an email from her husband saying she is getting worse every day and he thinks he is dying. He does not overreact. I am waiting to hear if he wants me to come, but I don't know much about gastro. and don't know what a caregiver can do besides comfort. Please give me some instruction before I go. Thank you. She is 44 years old and has had this for at least 10 years.
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2 ReactionsHi @maryflorida, I know the angst and pain of being far away from loved ones in their time of need. The feeling of wanting to help, but being unsure of where to start. I moved your questions regarding instructions of where to begin to an ongoing conversation about gastroparesis in hopes to connect you with other members who are facing the same diagnosis. Perhaps they can lend some tips on things that family members did to help them.
I also wanted to share the caregivers group with you in case you would like to connect with others taking care of family and friends.
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/
Do you know what your daughters current symptoms are? Does she have regular GI care?
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2 ReactionsGastroparesis in itself isn’t life-threatening, but it can cause life-threatening complications. The exact cause of this disease in unclear, yet it’s believed to stem from injury to the vagus nerve.Have any Dr's talked about looking into doing any kind of bypass surgery?
The vagus nerve controls stomach muscles. High blood glucose from diabetes can damage this nerve. In fact, may people with gastroparesis also have diabetes.Does your daughter have diabetes? I'm so sorry, that this distance, is a problem, I understand this only too well, as I live in FL. and My kids are in MA.
I'm here for you.
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2 Reactions@karjack, thank you.. I will talk to her about this. She said she is calling her doctor today to see what can be done next. No diabetes yet but her father and my brother and her sister all have it. I will copy your note to her. Again, thank you!
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1 Reaction@maryflorida, karjack gave some good information, Gastroparesis can also be caused or aggravated by some medications such as opioids. There are medications that can help with the disease. Diet is important part of treatment. This link to the Mayo Clinic may help you understand.. make sure you click on the diagnosis & treatment link button at the end of the page. .. and for treatment go past The Care at Mayo link. https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787
ZeeGee
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1 Reaction@maryflorida My gastroparesis was caused by surgery so it came on as a result of that... but the clinic/hospital where that was done could not diagnose it ..so in 2 months I went to Mayo MN.. where they diagnosed it in a day.. the slow emptying of the stomach is not affected just by a diet ... but how I eat, how fast I eat, how much I chew, how much liquid I have with it. I cannot eat soft breads, broccoli, cabbage, yogurt and others... but what meat I eat for protein I have to have a gravy or a sauce with it... even if it is applesauce... bar-b-que or such.. things I eat must be cut up very small.. I use a food processor /blender often.. With gastroparesis gravity must come into play to empty the stomach.. so one has to keep the body as vertical as possible after eating ... I can put my feet up .. but I have to sleep with a big wedge propping up my body trunk so the residue of the stomach will not come up in the night... Every meal is a challenge.. eat often and in small amounts.. crackers, small bites of cheese... Mayo Scottsdale is a good place to go... (during the winter some of the doctors from Minnesota look forward to going to AZ... Good luck.. I have found that a person who does not experience the gastroparesis can not relate very well...
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1 Reaction@ken82 Thank you; I am going to send your letter on to my daughter.
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