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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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Yes, I will post updates as I have them. Thank you both!!
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2 Reactions@montgomery41
This does sound very uncomfortable and I can understand your concern. A second opinion as suggested by @pdilly sounds like a wise decision.
It might be best that your second opinion come from a research oriented health care system like Mayo (clinics in Minnesota, Florida and Arizona) or a medical university in your area. You need to have some good specialists overseeing your condition and your treatment.
Will you post an update on your search for help?
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1 ReactionGod bless you @montgomery41 !!! I’m so sorry that you’re going through all of that. I have moderate Gastroparesis so I’m not suffering the way you are. It sounds like your gastroenterologist found a bezoar ( or bezoars) in your stomach. Surely they are going to check again after you’ve been on the liquid diet for a while. And your gastroenterologist should be sharing all of this with your GP. If you don’t think your gastroenterologist is doing everything possible to help you, maybe you need to look for a different one.
Good luck to you!
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2 ReactionsHi @gharm, I was diagnosed with Gastroparesis about a year ago. The test that confirmed this was a gastric emptying test. My symptoms were major weight loss at first (from a size 12 to a 2) in about 2 1/2 months. I also could not eat many foods without experiencing some adverse reaction such as constipation, nausea, dizziness, etc. I lived in about 3 foods for over a year of which were bone broth, organic turkey and yams. I’m also a POTS patient so it was difficult healthwise. My histamine levels rise rather quickly with almost everything so I make a lot of items myself (cleansers, cosmetics, etc) and I have to watch my foods carefully. I would suggest you ask for a gastric emptying test. In my case applesauce took more than 5 hours to move. I now have SIBO and am being tested for MALS. My physician is trying to see which began first. I hope they are able to get to the bottom of it sooner for you.
I know you are never supposed to Google your symptoms but because the doctors don't seem to know what's going on with me I figured I should give it a try. After googling my symptoms gastroparesis popped up saying that my symptoms resemble it. Seeing as the symptoms online seem very vague I was hoping someone who Has it or is suffering from it could tell me their symptoms? I am currently dealing with severe stomach pains when eating, diahrea that seems so be slime like and yellow, a feeling like something is stuck in my throat by my chest and feeling like I'm going to vomit it up. Some days are way worse than others but right now I can't eat and it's caused me to loose over 22 pounds in a month. What were your symptoms before you got diagnosed?
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2 Reactionsyes, my daughter had Gastroparesis and was treated at Mayo Clinic in Rochester. She was treated by Dr. Camalari, however not sure if he is still there, but you could certainly check. He was a wonderful Dr.
What is the cleavland clinic? I live in Wisconsin so I am not near a mayo clinic and no one in my family would take the time to drive me to a mayo clinic. Right now everyone is angry that they have to take off to take me places and I have become a burden
I have lost over 22 pounds in a month I am now currently dealing with some abdominal swelling and it's really hard to breath on top of pain that feels like someone is squeezing my abdomen. Again barely eating anything do to pain after eating and just generally feeling like very weak and in pain
@hgarm I’m so sorry you feel like that... I go to Mayo Clinic here in AZ it’s ok I’m trying to get a patient advocate
Nausea and vomiting all the time. It got so bad I started vomiting up any liquid.I was diagnosed December 2018 and have lost 16 pounds since then.I can only eat unsweeten applesauce or canned peaches without sugar and infant lemon flavor pedialyte to drink to be able to take my other medication.Everything else that I drink or eat results in vomiting even drinking water. Im on zofran which helps a little and reglan 3 times a day and 10,000mg a day vitamin D3 my calcium is 10 and im on prescription iron pills 325mg once a day for 6 months now and my iron is always between 8 and 10. My parents said as an infant I always had a vomiting issue and could only drink goats milk. As I got older stomach problems continued and I was put on a medication called "Milkinol" it was in a brown bottle and it was white like milk. it coated my stomach and tasted good .I would have to take it 30 minutes before eating 3 times a day from age 4yrs to age 12.After that I was always a picky eater because my stomach hurt all the time this was in the 70's in Alabama so going to a Gp wasnt an option.I was always very skinny and anemic with brittle nails and osteoarthritis in all my joints.So now the Gp said its probably always been gastroparesis.This has been a lifelong battle with stomach problems.