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Gastroparesis with severe symptoms!
Digestive Health | Last Active: Nov 30, 2023 | Replies (437)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..."
I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don't make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don't let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I'm sure with the way they do work ups there they would figure this out.
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.
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.
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?
<p>have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? </p>
, I have been diagnosed with gastroparesis. Been trying the liquid diet, but can't do that all the time. If I eat a normal amount of food, the symtoms are worse. small amounts more often. I get acid reflex really bad, have to sit up at night till I fall asleep, All things I take for acid reflex slow down the emptying of the stomach, Can't win,. Any suggestions. Trying to get an appointment at Mayo in the gastrology dept. but no luck.
Hey! OMG I have a mild delay too! My first emptying test said 59% emptied in 2 hours and at 4 hours I had 23% left. My second 4 hour was 64% emptied in 2 hours and 9% at 4 hours. It's always slow at 4 hours as you can see. That's usually when I get the most nausea too is hours after eating. What was your test result? My symptoms were so severe that I got a pacer and I love it! I feel pretty decent now. My bloating isn't so bad anymore.
My neurologist prescribes 250 mg of Erythromycin to be taken 3x a day (total 750mg daily) to help control symptoms, and it works. Does not fix the problem, but without the Erythromycin I have the severe nausea, vomiting, bloating, and cramping but when I take the Erythromycin and eat small, carefully selected meals, I find that between the two it's much easier to control and sometimes I have days where I have no nausea at all. My delayed emptying problems are due to neurologic disease, so I don't know if this will help you or not, but I hope it does. I second Jane's comment---you are not alone. Sending well wishes, always.
Try Align. You can get it at Sam's or Cosco. It's a probiotic. I have Gastroparesis as well and though it hasn't healed me, I can truly tell a difference. A doctor at Mayo in Arizona told me about it. Also, suck on peppermint candies. That helps me tremendously with nausea. Zofran has not helped me at all. You are not alone.
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I'm so sorry for your troubles. It must be awful to have to deal with all the nausea and vomiting, etc. My mom was recently diagnosed with gastroparesis after having a gastric emptying study. They said hers was "moderate" but she's been having a terrible time with it - throwing up every few days and unable to keep anything down. She's been in the ER with dehydration several times as well. She has osteoarthritis (along with a number of other medical issues). They put her on Reglan which helps with the vomiting when she can keep it down...It's been extremely difficult for her. One thing they are looking at is that she takes pain meds for her chronic pain and this may be causing the slow down in her gastric emptying. We are in the middle of all this but just wanted you to know you are not alone and I hope you are able to come to a satisfactory solution - it is a really difficult situation - best of luck!