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 🙁

@ktracyf

Hi, my name is Tracy and I was diagnosed with gastroparesis about 3 weeks ago after a year of vomiting, stomach pain, countless trips to the ER, 5 hospital stays and 39 lbs lost. I also have long term back pain after an injury and multiple surgeries, fibromyalgia, Sjogren's Syndrome (an autoimmune disease like Lupus only everything is dry, including my digestive tract), osteoarthritis, and a weak immune system that requires IVIG (IV immunoglobulin treatments ) once a month to try to boost my ability to fight infections and such. I started with vomiting binges five or six years ago. They'd happen once a year at first, then twice until this last year, where was sick more than not. I had Zofran, but just the taste of it started making me sick to my stomach, then my potassium would tank and we'd be running back to the ER.

I wasn't able to have the gastric emptying test because I have an internal pain medicine pump which would have caused a positive result regardless, but I've seen the same gastroenterologist each time I've been in the hospital, and he's done or had done every other test, some 2-3 times, and seems that gastroparesis really fits the bill. The last time I was in, the first week in Jan., he gave me Reglan and Phenergan suppositories for when I can't take anything by mouth. He added Prilosec ER in Dec. and Bentyl as needed up to 4 times a day. He would have liked me to take the Reglan all the time, but my family doctor is very afraid of the side affects, and she's really been up on things since I switched to her about 5 years ago – she did everything she could to get me in to a gastroenterologist in an area where you can wait up to 6-8 months for an appointment, so I've been using it as needed and that seems to be working.

Since my last hopsitalization, I've been on the gastroparesis/FODMAP diet, so I've been staying away from gluten, lactose, nuts, fresh fruits and vegetables, anything high fiber except 5 doctor approved prunes minus skins each night so that the opioids don't cause more problems that I don't need. I've been doing pretty well. Since I really wasn't eating anything for the past year, I don't feel deprived at all, and I eat smaller, more frequent meals, like everyone else. I've been able to cut back a bit on my pain meds, which I imagine can't hurt, and will talk to my pain doctor next week about the possibility of turning down the internal pump. I know I won't be able to get rid of it completely, it takes care of an area of my spine that had already been fused when I injured it in a car accident, but I figure every little bit can help.

I'm not usually as positive as I sound today, but so far, I've had a good week. My husband's been very supportive (which wasn't always the case). He made a really good soup with things that I can eat and I feel like I've been at a banquet fit for a king since Sunday, But this is a real change for me after a year of hell. I hope it continues and I hope others have some days like the last few I have.

Sorry for going on so long, Tracy

Jump to this post

Good luck for the future your post is very encouraging Teresa

REPLY
@tross1974

I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis

Jump to this post

Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test

REPLY
@donnak142

Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test

Jump to this post

I have stomach pain through to back no one will listen to me how do I get this test ca9-19

REPLY
@donnak142

Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test

Jump to this post

@donnak142 Donna, I am so sorry to hear about your brother. Pancreatic cancer is such a tough one, and I have heard that it's because it does not generally get diagnosed for a long time. The husband in a couple of dear friends is battling that now, in fact I drove him to his chemo yesterday. I hope and pray he will survive this.
JK

REPLY

I read an article about "functional medicine". There is such a thing. This person had to have a tube inserted in her stomach. She was that bad. And she had pictures of herself so thin and tired. Now. She claims she is has no issues. She went to a Functional Medicine Clinic. She ended up helping her diet (which I assume you have been avoiding the foods you are not to eat) with adzuki red bean paste which add protein and beet kvass. She also said that sometimes you can be misdiagnosed and have hypochloridia. Don't know if functional medicine is a choice but it might be worth a shot. Does Mayo Clinic have a functional medicine department? I have this disease and did not take the medicines. My gastroparesis said to try iberogast. It is natural drops that go into a trip before or during your meals. It helps the motility of your stomach and it works for me. When I have the coughing fits, I resort to sugarless gum. Works great! I also have a 5-7" wedge until my mattress to elevate my heads and I sleep in my left side as the right side is a straight shot to your stomach & you can get reflux. I do exercise twice a week too. And avoid ALL of the foods that they listed.

REPLY
@cookiegnias

I have stomach pain through to back no one will listen to me how do I get this test ca9-19

Jump to this post

I think you should be able to ask your primary care doctor to do the blood test.

REPLY

I am in so very much pain. Was diagnosed with gastroparesis. Has anyone been diagnosed as having this and have you found it painful

REPLY

Hi @susanpsg and welcome to Connect. You may have noticed I moved your post to this existing discussion on gastroparesis so that you can meet others who may have similar discussion. Simply click VIEW & REPLY to find your post and read what others have said about their lives with gastroparesis.

I also wanted to introduce you to fellow Connect members, @suemer, @ktracyf and @donnak142 as they have experience with gastroparesis and may be able to offer you support and share their experiences.

Back to you @susanpsg how has your doctor suggested you be treated at this time? Is there anything you can do to lessen the pain at this time?

REPLY
@tykehome

I am a 39 year old female that was diagnosed with Gastroparesis last year after a decade of "issues". It never bothered me before this past year but the symptoms have drastically worsened. I am seeing several GI Specialists in my area and one at the UW Wisconsin Hospital in Madison. They have had no real answers for me in regards to treatment, management, dietary, etc… I suffer from severe constipation with excessive flatulence (farting), bloating, pain and distention. Even Miralax and Milk of Magnesia daily hasn't helped. It has taken over my life. I am a very active outdoors woman and have little to NO energy now. I don't have the vomiting like most. Just the other symptoms of constipation listed above. I also developed some Hemmorrhoids which have been difficult to manage as well.

Since I haven't had much help or testing done this past year, I am looking to going to Mayo Clinic in Rochester, MN and was curious to here about others opinions and experiences with the specialists there and in general of how you're living with this disease and the complications and health issues that accompany it. It has greatly affected my mental health but go to therapy weekly.

Thank you anyone who might be able to offer advice or suggestions! Much love to all of you going through this or similar health issues.

Jump to this post

The G. I. Docs there are the best in the world. They are very knowledgeable, efficient and .kind. Be prepared, possibly, for lots of testing. I found their fees and tests cheaper than local ones. They are salaried, or were when I had my visits (2).

REPLY
@kitmus

The G. I. Docs there are the best in the world. They are very knowledgeable, efficient and .kind. Be prepared, possibly, for lots of testing. I found their fees and tests cheaper than local ones. They are salaried, or were when I had my visits (2).

Jump to this post

I'm sorry for the delay as I wasn't feeling well the past several days. Thank you so much for your opinion and advice on the GI doctors at Mayo. I called them last week and got established and a doctor has requested my medical charts to be faxed over. I was happy that they started the process so quickly and hope to get set up with an appointment as soon as possible. Thank you again!

REPLY
@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

Jump to this post

@sickirishlass

If you use the search option up above this post.. looks like a magnifying glass, and type in gastroparesis you will find many with this condition. Dietary tips are throughout those post. Every person is different. It is recommended to have a lower fiber diet. I find for me.. being I also have diverticulosis throughout my colon, which requires a high fiber diet.. that I have to hit a medium. I avoid veggies and fruits that are very fibrous. I will eat broccoli flowerets well cooked and avoid the stems that are fibrous. I love asparagus and eat it much like broccoli.. making sure I avoid the fibrous stem. Most veggies I just cook Southern Style.. cooked to death.. looks like baby food if smashed with a fork. Summer squash I peel, cut in half and scoop the seeds out with a spoon. I avoid stringy green beans, black-eyed peas field peas and greens like kale, lettuce, collard and mustard greens. For some reason I can eat the creamed spinach my husband cooks. I can eat Bush's canned baked beans, but no other brand.

I also have achalasia and Barrett's esophagus… swallowing problems and food feels like it gets stuck with plenty of chest pain. Only fruits I eat raw are very ripe bananas and satsumas (a type of tangerine.I cut the fruit in half and run knife around the edges and between the sections and scoop out the sections leaving the fibrous parts behind.) I eat canned fruit and I cook apple slices without the peal. I can sometimes eat homemade granola bars…. a few finely chopped roasted nuts, finely chopped dried fruits with local honey and brown sugar mixed with toasted oatmeal. Sometimes I eat a few roasted pecans or peanuts .. chewing well.

Only cracker I can eat is Ritz. Bread is hit and miss. So I eat very little bread. I eat very little white potatoes. Even mashed they are difficult to swallow. I do better with sweet potatoes, but not by much.

Meat… ground beef is my best bet. Chicken is most difficult for me. Sometimes I puree up some pouch tuna fish with a bit of mayo and eat with crackers. I have eaten so many eggs I cannot stand them anymore.

Mostly a diet is trial and error. What works for one may not work for another.

Best of luck,
Zaroga

Liked by sickirishlass

REPLY
@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

Jump to this post

I don’t see a magnifying glass any where & when I type in gastroparsis it tells me doesn’t exist (????)

REPLY
@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

Jump to this post

@sickirishlass It may vary from device to device as to where the search box is. You are misspelling gastroparesis . Try again. I'm not a great speller either. I had to put it in Google for it to correct my spelling of it. 😁

REPLY
@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

Jump to this post

Ty very much 👍

REPLY
@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

Jump to this post

This is the main post I believe o the subject. https://connect.mayoclinic.org/discussion/gastroparesis/?utm_campaign=search

As you can tell it goes back a few years, but you can change the option to the most recent post first.

REPLY
Please login or register to post a reply.