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

@donnamarie

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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@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.

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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'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!

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@donnamarie

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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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

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@donnamarie

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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As I have written before,my gastroparesis was caused by my narcotics. Many medications can do this. Before botox was more popular and my Reglan was discontinued (I had Parkinson-like symptoms), doctors in Philadelphia wanted nto place a pacemaker in my stomach. A lawyer I knew told me about "botox" trials that were starting at another hospital in Philadelphia and his daughter had it…was doing great! Not wanting to travel into the city and so far away…but getting sicker and sicker…the erythromycin wasn't really helping as a prokinetic (making my stomach contract and emptying it)…my local GI doctor told me Hershey Medical Center was starting to use botox to the pyloric sphincter. I had it done January 2014 and still am 80% better! A God send!

Liked by nikkig

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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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Where did they give you the shot? I had them in my head for migraines a few years ago….not much luck with that then.

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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

Jump to this post

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@jlfisher56

As I have written before,my gastroparesis was caused by my narcotics. Many medications can do this. Before botox was more popular and my Reglan was discontinued (I had Parkinson-like symptoms), doctors in Philadelphia wanted nto place a pacemaker in my stomach. A lawyer I knew told me about "botox" trials that were starting at another hospital in Philadelphia and his daughter had it…was doing great! Not wanting to travel into the city and so far away…but getting sicker and sicker…the erythromycin wasn't really helping as a prokinetic (making my stomach contract and emptying it)…my local GI doctor told me Hershey Medical Center was starting to use botox to the pyloric sphincter. I had it done January 2014 and still am 80% better! A God send!

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Since you believe yours was caused by Narcotics did you stop the pain meds and if so how long ago did you stop?

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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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Hi, I am also looking for help with the same problems,also something for the nausea I have tried all the meds.I was just diagnosed with small fiber neuropathy. How do all these neuropathy's play in with all these GI problems?

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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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Hi,its Lori again. I just found your post. I need help!! I do go to Cleveland Clinic,and I know I'm a complicated case with overlapping diseases. I have ben getting worse each year and hope to pick up info that can help me.
Darli can you tell me what Failed Nissen w/gastroparesis and possible Mals would be? Thank You, Lori

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@loricarey

Hi,its Lori again. I just found your post. I need help!! I do go to Cleveland Clinic,and I know I'm a complicated case with overlapping diseases. I have ben getting worse each year and hope to pick up info that can help me.
Darli can you tell me what Failed Nissen w/gastroparesis and possible Mals would be? Thank You, Lori

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Hi Lori you said you have a failed Nissan? Can you tell me more? I had a nissen done I'm not sure if it helped me or hurt me more. Was diagnosed with a nutcracker it's where your esophagus goes into spasms very painful. Looking for someone going through the same thing.

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@montgomery41

Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle

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God 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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@montgomery41

Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle

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@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?

Liked by pdilly

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@montgomery41

Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle

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Yes, I will post updates as I have them. Thank you both!!

REPLY
@montgomery41

Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle

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Hello @montgomery41,

I found some information from Mayo Clinic regarding new treatments (under investigation) for gastroparesis, and though I'd copy relevant points that might interest you:

– One example is a new drug in development called relamorelin. The results of a phase 2 clinical trial found the drug could speed up gastric emptying and reduce vomiting. The drug is not yet approved by the Food and Drug Administration (FDA), but a larger clinical trial is currently underway.
– A number of new therapies are being tried with the help of endoscopy — a slender tube that's threaded down the esophagus. One procedure used endoscopy to place a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open.
– Gastric electrical stimulation is a surgically implanted device that provides electrical stimulation to stimulate stomach muscles to move food more efficiently. Study results have been mixed. However, the device seems to be most helpful for people with diabetic gastroparesis.
– Gastric pacing also involves a surgically implanted device that stimulates the stomach muscles, but this device tries to more closely mimic normal stomach contractions. Currently, the device is too large and causes discomfort. Gastric pacing devices are only available in clinical trials right now.
https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792
The above link also has details about two current Mayo Clinic trials that you may wish to view.

I'd like to reconnect you with @jlfisher56 @kamg @aishia @katmandoo @xcinsanx @harliegirl, as they've discussed similar issues – I hope they will join this conversation and share their thoughts about talking to your doctors.

Liked by kracki

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