Gastroparesis with severe symptoms!

Posted by shimmerpixie @shimmerpixie, Mar 5, 2012

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand 🙁

@citygirlannie

My stomach emptying test showed I have a zero digestive system. This was due to a surgery last year to pull my stomach down to where it belongs. It had gone thru a large hernia and it got lodged behind my heart and it was leaning on my lungs. My only systems were shortness of breath, weight gain and a very swollen stomach. After the surgery was when the vomiting and diarrhea, and cramps started. I’ve seen 6 gastro. doctors and I’ve taken every medicine there is. I even tried Botox and pot. I have lost over 50 lbs. I have dry eyes, hair loss, teeth problems and no energy. All the doctors agree that the vegas nerve was cut or badly damaged and it can’t be repaired. You mentioned that you have a gastric pacemaker. Can you please tell me more about that. I don’t want a feeding tube if it can be avoided. Thanks so much for sharing.

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I had a gastric pacemaker implanted next to my stomach in 2012. My gastroenterologist suggested it after everything else I tried didn’t work. I had mine done in Omaha Ne hospital. I believe it has leads that are directly leading into my stomach which stimulates my stomach to work so when I eat it will go down. Gastroparesis means your stomach is paralyzed so food won’t go down and then you vomit it up. I vomitted and was nauseous 24/7 for at least 3 yrs. Took several Drs before I was diagnosed. The dr adjusts the pacemaker by upping the batteries in it with a hand held device. I was told its kind of like a heart pacemaker but for your stomach. My last visit to see the dr I ask if they know yet what causes gastroparesis and he believes it’s from a virus but I’ve also heard it can be caused by the vegas nerve not working. I hope this helps answer some of your questions about it.

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Thank you so much for the information. I was diagnosed with Gastroparesis 2 weeks after my surgery, so I know what caused it. The vegas nerve is damaged. If I don’t eat I get nauseous and if I do eat about 10 to 15 minutes after I vomit and have dry heaves and the diarrhea starts. I get so worn out I have to lie down and rest. I have no strength anymore and I’m still losing weight. I applied for a Gastroparesis study but because during my surgery the doctor performed a fundoplication wrap (which he explained that part of my stomach was wrapped around the esophagus) I didn’t qualify. I live in New York. I’m sure one of my gastroenterologist’s can let me know if I qualify for a pacemaker and if I do where I can get one. I’m so glad you found some help. Thanks again.

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@citygirlannie

Thank you so much for the information. I was diagnosed with Gastroparesis 2 weeks after my surgery, so I know what caused it. The vegas nerve is damaged. If I don’t eat I get nauseous and if I do eat about 10 to 15 minutes after I vomit and have dry heaves and the diarrhea starts. I get so worn out I have to lie down and rest. I have no strength anymore and I’m still losing weight. I applied for a Gastroparesis study but because during my surgery the doctor performed a fundoplication wrap (which he explained that part of my stomach was wrapped around the esophagus) I didn’t qualify. I live in New York. I’m sure one of my gastroenterologist’s can let me know if I qualify for a pacemaker and if I do where I can get one. I’m so glad you found some help. Thanks again.

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I also had a Nissen fundiplication, pylori plasti and the gastric pacemaker all done in the same surgery. I’m sure you could have the gastric pacemaker put in also. Good luck & I hope you find a dr that will do it for you. I had to drive quite a ways away to find a dr to do it but it was so worth it.

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Thank you, I’ll start looking today.

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@colleenyoung

Welcome to Connect @faycarole. I moved your message to this discussion about gastroparesis to connect you with other members. I’d like to introduce you to @kendrakay, @margieg, @sherry8034, @dawn1952 and @citygirlannie.

Fay, here is some information about treating gastroparesis from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

To contact Mayo Clinic, click this link http://mayocl.in/1mtmR63 for the contact information in Minnesota, Florida and Arizona. They will be happy to help assess your situation.

What symptom or symptoms do you find the most challenging to manage?

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the constant nausea, my husband is going to have a cochlear implant at vanderbilt in nashville tn next week he is almost deaf and it is so frustrating that i will be unable to go with him for it but my son and daughter in law will be with him after this is done and is hopefully successful i am going to tackle this gastroparesis and my first plan is to try to go to mayo

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@colleenyoung

Welcome to Connect @faycarole. I moved your message to this discussion about gastroparesis to connect you with other members. I’d like to introduce you to @kendrakay, @margieg, @sherry8034, @dawn1952 and @citygirlannie.

Fay, here is some information about treating gastroparesis from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

To contact Mayo Clinic, click this link http://mayocl.in/1mtmR63 for the contact information in Minnesota, Florida and Arizona. They will be happy to help assess your situation.

What symptom or symptoms do you find the most challenging to manage?

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Hello.
After suffering 2 long and horrible years, I no longer have gastroparesis.
I voluntarily stopped all medications for the GP and severe psoriatic
arthritis after multiple complications from side effects landed me in the
hospital numerous times from the 12 medications I was taking.
I began juicing with ginger and greens religiously, became a vegetarian and
no longer have any symptoms of these two dreadful diseases.
I wish all those well who are suffering and pray they too can be healed.
Living a plant-based lifestyle worked for me.

Terra

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@ccosci

Hi had a severe case as well. extented stomach severe acid stomach. I gave up all gluten and dairy products and all my symptoms went away . it was a miracle.

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Glad you are doing well. I am just starting to give up gluten and dairy.

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@ccosci

Hi had a severe case as well. extented stomach severe acid stomach. I gave up all gluten and dairy products and all my symptoms went away . it was a miracle.

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Welcome @clemlaa. Are you finding it a challenge to give up gluten and dairy?

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I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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I have given up trying to explain that I have Crohn’s, GERD, diabetes, and a lot of pain. If my family had arthritis I had the same problem I am told. All was false diagnosis. I’ve been telling different doctors that I was cured in 1960, but because it was not drugs that couldn’t be correct. Now I learned all about GERD, diabetes, Crohn’s, and memory all controlled by the same source. My treatment in 1960 by an Italian Doctor was shots of: Methionine, B-12, and vitamin K. A two week treatment and I avoided surgery to remove part of my inflamed intestines do to severe pain. Last year from a neck pain I solved all my problems. I noticed eating bread and sugar increased my pain but eating vegetables decreased the pain. I changed my diet per a friend suggestion and the following happened. I was able to stop all my bodies pain including neck, hands, lower back, and knees area intermittent pain. Also by it self GERD stopped. I had it for over 50 years but I knew from the Italian treatment it stopped for 3 years. My diagnosis is the liver since Methionine cleanse the Free Radicals of the liver and I am sure it does other things. I located some liver supplement pills but it helped until I ate the wrong food again. Now I have GERD completely under control and so my intestines and memory. Also my diabetes reversed to normal. I removed bread and any flour products, removed all carbohydrates, soft drinks or any thing with preservatives. I make fresh smoothie drinks fruits and raw vegetables and it controls all my pain within one hour. I eat what I shouldn’t and get the pain activated and Neuropathy, but vegetables specially raw vegetables is better than any drug medicines. Why doctors keep it secret? The Internet is full of good information about what I am talking, but no one wants to hear specially when they hear about that bread is the source of many diseases. Sugar also. My neck pain have been my trainer and learning even to pay attention to fresh fruit sugars. So far so good since after many blood test and Ct Scan I was told by my doctor that I figured out there is no medication for me. I also lowered my blood pressure to normal and healed all my ulcers that was on my esophagus from acid stomach. I wished I knew all of these 50 years ago and not suffer from GERD like I did. Try what I am saying it will cure you in few days. I hope it will help you.

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@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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Hello @2thnkpztv,
Welcome to Connect; I’m sorry that you are experiencing these symptoms, but also glad to know that you are being an advocate for your health. You will notice that I moved your discussion to this group within Digestive Health, as I thought you might like to connect with others living with gastroparesis.

I’m also tagging @gingerlyn, @clemlaa, @citygirlannie, @margieg, @sherry8034, @katmandoo, and @faycarole, with the hope that they can share their experiences with you; @mrsdeecee, do you have any suggestions for @2thnkpztv with regards to the hoarseness due to GERD?

Here is some information about treating gastroparesis from Mayo Clinic http://mayocl.in/2gc3xYu.
@2thnkpztv, have you considered getting a second opinion? Since the medication is not working, how are you managing your symptoms?

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Have you gotten any answers I am dealing with this exact issue now I know this is an old thread , hoping for some help.

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What is your health problem?

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@katmandoo

What is your health problem?

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I started about 6 month ago with severe bloating ,GERD type symptoms , pain in the upper abdomen, vomiting, nausea feeling full rapidly .After being told I had Gerd alone and medication not helping , also being told it was stress my gasto did more tests and it came back as Mild Gastro-paresis but my symptoms are severe .

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@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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WOW !!! THANK YOU

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