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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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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.
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.
I tried apple vinegar and it stung in my stomach.
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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2 Reactions@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
Thanks for the info appreciate it
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1 Reaction@donnamarie, In all of the testing you have had, I am sure someone has checked for pancreatitis, but I would double check to be sure. There are times when the pancreas becomes so stressed that you don't get the typical extremely high liver enzymes (lipase and amylase) that point to pancreatitis. That also causes gastroparesis because your body is not producing the enzymes needed to digest your food which also leads to malnutrition. I would hope there is an easier to combat explanation, but your symptoms are identical to someone suffering from either acute or chronic pancreatitis.
I'm getting an upper endoscopy April 5 to confirm gastroparesis. I had to cancel my last one a few weeks ago because I tried cleaning out for almost 3 days and nothing was moving. I told my doc when they do the next one next month that I absolutely do not want my esophagus stretched, it's only been stretched once so I'll remind him again before they give me the anesthesia. I was just prescribed amlodipine besylate a low dose calcium channel blocker for my Nutcracker esophagus. I've only been taking it about 5 days but I asked the doctor please prescribe until after I get the upper GI test results. I will look up this other so-called rare antibody. I'm on mostly a liquid diet right now and I'm dropping weight really quick. My blood work is great except I'm low on folic acid and vitamin D. I read about esophagitis eosinophilic people are low on vitamin D, I also have disc desiccation in the thoracic spine and I'm assuming that's one reason for my neuropathy plus the cervical injuries and my low back with bone on bone. Hopefully we can get this figured out soon! I will be 50 years old in August and I still can't work, my hands go numb and I'm having trouble with my feet turning inward, I almost fell while taking a shower last week luckily I grabbed the side of the tub before I hurt myself. Thank you all for responding, I will keep in touch see what my GI doc will do after my test next month!
Have you had an esophageal manometry yet? You could also have Nutcracker / Jackhammer esophagus like I do. I also have esophagitis eosinophilic, esophagus damage due to food allergies
@donnamarie ^^^