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Gastroparesis with severe symptoms!
Digestive Health | Last Active: 2 days ago | Replies (494)Comment receiving replies
<p>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. <br />~Stephanie~ <br />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 :(</p>
Replies to "I was diagnosed with IBS when I was 18. I'm now 30. Early in 2011, I..."
Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.
@shimmerpixie I just came across your original post, have you had your symptoms sorted out yet? I also have areas in my colon that are slow.... then some that are fast?? Anyways your symptoms sound similar and I have been diagnosed with MALS, FMD and EDS. Would like to know if you have had any vascular workup?
Hello @shimmerpixie and everyone in this group. I have had chronic constipation for over 10 years and also suffered from eating disorders for over 25 years and still struggle but am much better. I saw specialists and they told me all the wrong things to do like take more fiber. I told them it made things worse but this went on for 10 years until a couple months ago I had a gastric emptying study done and was diagnosed with Gastroparesis. The first thing I asked was if my eating disorder history was the cause and they said it's not related. Mine is idiopathic. This past week things have worsened a lot. I don't vomit but have some acid reflux. I get severely distended and bloated (accompanied by pain) and sometimes pass an insane amount of gas at night. The symptoms seem to increase throughout the day. I am just learning about all this and am being sent to UW Madison Hospital for further testing and counseling as to how I can still maintain recovery in my eating disorder and not eliminate foods that I normally eat which are all on the "NO" list. I can not take Erythromyacin because of an interaction with another medication and also the expense of it with prescription insurance was almost $200 a month which I can't afford long term They just started me on a trial of Trulance. I am thankful for all of your stories and hope that we can be a source of information and encouragement as we continue on this journey. Much love to all of you...
I have mild osteoporosis and have a lot of pain around stomach and back the pain is brutal in taking tramadol
I am like you. I’m writing this in 2018, 6 years later, but if you’re still on here I am here.
PLEASE look into vascular compressions - MALS - Median Arcuate Ligament Syndrome and other abdominal compressions.
I have idiopathic gastroparesis and am not diabetic. I have had the gastric pacemaker implanted in my stomach since 2012 and it’s going well. My Dr. told me not to take Raglan because it can cause Parkinson’s disease. If you have any questions feel free to ask me. Kathy
I take ondansetron odt it helps with nausea.
Yes I am 52 years old and had to leave work a year ago. I have mild gastroparesis with severe unrelenting nausea and pain. I just started Marinol, but my gastroenterologist hadn't really used the drug , but wrote 2.5 mg twice a day. Not enough. 5mg gets rid of nausea, but I still have this unwell feeling in my stomach. I have had a hiatal hernia with reflux since I was 22, but I've done well with PPi. I started developing nausea around 2007 plus I was developing lower extremity neuropathy. Zofran worked good for several years, but no longer effective . The first of December I went into a severe nauseated state that doesn't let up. I do NOT vomit. I can't live like this . I was to afraid of Reglan
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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.