Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks

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 🙁

REPLY

I’m sitting in a hospital bed currently another horrid bout with gastroparesis before I found this site I felt like the only person alive with this horrid crap tonight thanks to it I’ve read others stories and felt not so by myself in this fight. I will actually recieve Botox treatment on the 26th of this month I’m not convinced I’m not harming myself more by adding weird drugs to my already frail frame however diet control has not done much if belly decides its time to erupt she’s going to do it whether I drink gatorade for a month or eat like a starved dog.. either way I’m not the same person I was3 years ago I wished to be skinny.. be careful what you wish for. Because I’m scared at this point and feel awful my family suffers when I suffer. If anyone has any info please send it my way

REPLY

I’ve just been diagnosed with gastroparesis after having a gastric emptying test. My case is idiopathic in origin, prior to my diagnosis I was on massive amounts of prescription antacids for 4 months. Has this caused my gastroparesis to get worse. I’m scheduled to see a nutritionist in 2 weeks.I am taking erythromycin 250 mg. before each meal , am excercising, but don’t feel much improvement. Does anyone have any advice for me? Shocked with my diagnosis, signed sleepy tummy

Liked by Anonymous

REPLY
@paarak

Crystal Saltrelli (below message) has such a great website and support for gastroparesis. I found the site when I was first diaganoised four months agao. She is a life saver for me when I start to get depressed and feeling sorry for myself. I go read some of the facebook or her website and get a better feel for life. Right now I am having a good spell. I try to keep track of everything that goes on in the day – so when I am having a good day it helps to see if there are trigger points. I seen a UCDavis specialist a couple of weeks ago and she took meoff Domperidone as she didn’t think it was helping and prescribed Reglan. But after reading all the side effects the last thing I want to do is give myself more problems so I never started taking it. I am not taking any meds!! What she also told me to start taking for my constipation is MiraLax and a fiber supplement CITRUCEL (although Crystal website suggest being careful with Fiber supplements). Now that I am not having prog.ems with constipation – the liquid, soft food diet that I am on seems to work. I feel really good with the diet modification. almost feel like I can start experimenting with more solid gastroparesis friendly food again.

Jump to this post

Hi , I also liked crystals site until I wanted to join one of her online groups for GP and it was outrageous what she charges so I could not do it ! I belong to “ INSPIRE “ITS A GREAT SITE !!! No charge for help . Endless support and resources . I’m doing there TESTFLIGHT right now for there new updated INSPIRE APP . I highly recommend it . I’m not bashing crystal I
Sure she has helped a lot of people but her fee was to much and her claiming to no longer have GP IS strange seeing as it does not go away . Good Luck to u AND HAVE A GREAT DAY 😊

REPLY

OMGOSH ZeeGee — you have been thru so much! I read the entire blog — you are an incredibly strong woman!
I’m so thankful to Mayo for this Connect service they let us use to talk about our experiences. We all have something different to share because we’re all different. It gives people who are seeking ways to cope with health issues so many ideas and options to look into and discuss with their docs — so many different perspectives.

REPLY
@pdilly

Oh my. God bless you @fourof5zs !!!

Jump to this post

@pdilly

Thank you.

I do pray you will have no more problems.

I was going to tell of how my Nissen fundoplication repair went. It is too long for me to type. I have a very sore thumb from taking care of my mama… she landed on it during one of her falls. A strained tendon I think .. thumb brace at night. I am so used to typing properly instead of one or two fingers.. the thumb just naturally goes to the space bar. instead here is my blog post .. no ads I know of… https://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html

ZeeGee (is what most call me nowadays)

Liked by pdilly

REPLY
@pdilly

@downtowntiger thank you for sharing. So glad your LINX procedure was successful! The re-do of a Nissen fundiplication I had last Tuesday was also successful — heartburn has stopped again — yay!

@fourof5zs you are amazing! Thanks for sharing all of that! I never would have been able to find my notes from the past — although I’m sure I’ve saved them somewhere!

Jump to this post

@pdilly I am really glad that your re-do is already making you feel better.

Liked by pdilly

REPLY
@fourof5zs

@downtowntiger My husband became diabetic after the surgery. He is on several meds for it. I do not even know them all. We keep med lists handy in case of an emergency. Stress plays with his glucose count. His mom passed away in early 2017 and his dad last year just before Christmas. March of last year my sister passed away and in the summer last year our daughter in-law's dad passed too.. he was a good friend to us. One tragedy after another. Mama has been with us since June of last year. My brother that lived with her had to have emergency surgery… gangrene of his gallbladder and part of his colon. After long stay in hospital he had to go to rehab for a while. Stomach issues tend to run in my family. Mama has dementia that is getting worse. She cannot walk with her walker as much. I could go on, but I am off topic. Stress effects the body in so many ways.

Jump to this post

Bless you! Goodness, your boat is loaded.

Liked by pdilly

REPLY

Oh my. God bless you @fourof5zs !!!

REPLY

@downtowntiger thank you for sharing. So glad your LINX procedure was successful! The re-do of a Nissen fundiplication I had last Tuesday was also successful — heartburn has stopped again — yay!

@fourof5zs you are amazing! Thanks for sharing all of that! I never would have been able to find my notes from the past — although I’m sure I’ve saved them somewhere!

REPLY

@downtowntiger My husband became diabetic after the surgery. He is on several meds for it. I do not even know them all. We keep med lists handy in case of an emergency. Stress plays with his glucose count. His mom passed away in early 2017 and his dad last year just before Christmas. March of last year my sister passed away and in the summer last year our daughter in-law's dad passed too.. he was a good friend to us. One tragedy after another. Mama has been with us since June of last year. My brother that lived with her had to have emergency surgery… gangrene of his gallbladder and part of his colon. After long stay in hospital he had to go to rehab for a while. Stomach issues tend to run in my family. Mama has dementia that is getting worse. She cannot walk with her walker as much. I could go on, but I am off topic. Stress effects the body in so many ways.

REPLY

@fourof5zs I meant too bad I can’t take Metformin. It kept my weight down. But I am so grateful to be able to eat!

Liked by pdilly

REPLY

@fourof5zs I hate to hear that, but thank God, your husband is cancer free. I truly believe a Metformin caused my gastroparesis and made my GERD way worse. Unless he is diabetic and must be on Metformin, it would be wise to talk to an endocrinologist. I had GERD surgery, but my gastroparesis is 80% better. Too bad…..it kept my weight down. Best of luck to you. My husband’s sweet mom is 93……it is hard.

Liked by pdilly

REPLY
@downtowntiger

I had the LINX procedure, hernia and diaphragm repair surgery six weeks ago. I take domperidone twice a day. Other than the expected dysphasia, I can eat without pain. I don’t do spicy, but I can have fish and chicken, pasta, cheese and any soft food. Off my Dexilant-hallelujah! I discovered something very interesting-I took Metformin for insulin resistance. I found out it is very harsh on your digestive system and can cause delayed gastric emptying. I took it for 8 years before my gastroparesis was diagnosed and have had horrible reflux for four years. I think the Metformin started my stomach issues. Hang in there and keep searching for answers. Blessings to all!

Jump to this post

@downtowntiger
I have noticed since my husband has been in Metformin he has had more stomach issues…. he did not start the med until after surgery. He had a pancreatic tumor removed in 2009 and lost about half of his pancreas…. yes, cancer. Thankfully cancer free. I keep telling him he needs to go to a endocrinologist. They might help him or even make an appointment at the Mayo Clinic.. with whatever department they thought most suitable.

He is stubborn.. and added complication of being caregivers to my 91 year old mama. We tried putting her in a nursing home, but they did not even order her pain med patches. We had to bring one from home. They kept her water from her and her call button. The other nursing homes around here are no better. Tried to get her in hospice and they said not yet.

Liked by pdilly

REPLY
@fourof5zs

@sickirishlass

You might want to do as I did if you live in USA. Get a two week script to fill at your local compounding pharmacy as a trial. If you send to Canada you will want a larger supply. I cannot give you a exact price..seems like between $40-$50, but the compounding pharmacy should be able to give you a price before filling… you might speak to them first to make sure they will fill it. Insurance will most likely not pay. Mine did not.. I had just Tricare Standard then. I tried it in 2013 and it did not help and I had a lot of side effects. I would have to hunt up the piece of paper to tell you what they are… I have trouble remembering where I put things or a gremlin moves them.

I took Propulsid at one time .. it worked.. and some people can still get it if their doctor thinks the patient really needs it. It was taken off main market for contributing to heart problems I believe.

I have mild symptoms and do okay with diet and exercise. I have some nerve problem and my doctors do not want me to take Reglan. Reading side effects I don't want to take a chance.

ZeeGee

Jump to this post

I found my list of side effects of Domperidone.. first place I looked 😀. I flunked penmanship.

I guess it is illegal, but has exceptions.
On how to apply to get it: https://www.fda.gov/drugs/investigational-new-drug-ind-application/how-request-domperidone-expanded-access-use

More about the drug… list of drug interactions.. list is long.
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/description/drg-20063481

1E4DE0C4-4ECD-40D4-97EC-F770447EAF89

Liked by pdilly

REPLY
Please login or register to post a reply.