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shimmerpixie
@shimmerpixie

Posts: 1
Joined: Mar 05, 2012

mild gastroparesis with severe symptoms!

Posted by @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 🙁

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sherry8034
@sherry8034

Posts: 8
Joined: Mar 06, 2012
Posted by @sherry8034, Mar 6, 2012

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.


sigtau88
@sigtau88

Posts: 2
Joined: Mar 13, 2012
Posted by @sigtau88, Mar 14, 2012

I am sorry to hear what you are going thru. I actually just got back home from the Mayo Clinic in Rochester for Stomach issues. Mine are not nearly as bad of symptoms you are having. I have been to Johns Hopkins and UPenn and I will tell you that the Drs at Mayo were excellent. I was there for 7 days and went thru extensive tests. I was finally diagnosed with Gastrointestinal Motility / Gastroparesis. I met with the dietician today before I caught my flight home so I can modify my dirt to five small meals and still get the required nutrients. Good luck


sweets
@sweets

Posts: 5
Joined: Apr 17, 2012
Posted by @sweets, Apr 26, 2012

My 23 year old daughter was just diagnose with gastroparesis last week. She is always in pain. She’s got the worst case. She cannot eat because it hurts to bad, so she drink about four to five bottles of boost a day for nutrition. I want her to be seen at MAYO clinic In Florida, but medical insurance say she has to be referred. Dr seem like he want to do it on his own, but I want her to be seen by a specialist. My daughter is tired of hurting 24-7 not being able to sleep. What kind of med do you take for this problem. Is there anything else I need to know about this. Will she be able to eat again. Please someone help me!!!!!

Liked by graziahc


krishammerbacher
@krishammerbacher

Posts: 2
Joined: May 01, 2012
Posted by @krishammerbacher, May 1, 2012

I am 46 and was diagnosed last year with Gastroparesis. I am still searching for a treatment that will work for me. Your daughter needs to see a specialist. I am currently seeing a specialist in Ann Arbor and he is much more familiar with this condition that the doctors in my local community. Praying for your daughter.


sweets
@sweets

Posts: 5
Joined: Apr 17, 2012
Posted by @sweets, May 1, 2012

Thank you. This Dr. Put her on azithromycin to help her stomach empty faster but have not been taking it long enough to see a difference. She cried after she read that its not curable. She take liquid roxicet for pain from a pain clinic. She said she don’t want to take pain meds for the rest of her life. Is there anything else out there I can do, her case is severe probably cause it took so long to find out.


krishammerbacher
@krishammerbacher

Posts: 2
Joined: May 01, 2012
Posted by @krishammerbacher, May 1, 2012

From what I have read the severity of the symptoms is not directly related to the emptying time. This is the case for me…my emptying time is mildly delayed but my nausea is constant. I have tried many medications none of which have worked so far but I am not giving up. Currently I am taking Domperidone (although prescribed it is not FDA approved and it has to be ordered from another country or made at a compounding pharmacy). Botox injections are sometimes an option. There is a yahoo group for people with gastroparesis that has alot of good info and also this website G-PACT.org.


sweets
@sweets

Posts: 5
Joined: Apr 17, 2012
Posted by @sweets, May 1, 2012

Thanks. I am in the g- pact group. She’s not on anything for nausea cause nothing help. She said it just come up without being nauseous. I hope someone come up with somethimg to help everyone with this problem. I am praying for all who has it and other problems. Just keep the faith and things will get better.


sweets
@sweets

Posts: 5
Joined: Apr 17, 2012
Posted by @sweets, May 1, 2012

Somtimes I think about writing Dr Phil to see if he know where we can find solutions. Just a thought.


jodilynn
@jodilynn

Posts: 1
Joined: Aug 25, 2012
Posted by @jodilynn, Aug 25, 2012

I JUST FOUND OUT I HAVE SEVERE GASTROPERESIS. MONDAY MORNING I AM GONNA TRY TO GET IN AT MAYO HERE IN AZ. IS THERE A CERTAIN DR TO ASK FOR????? YTHKSZ2 JODI

Liked by jodilynn


MrsHarrison
@mrsharrison

Posts: 2
Joined: Sep 29, 2012
Posted by @mrsharrison, Sep 29, 2012

I just found out last week I have severe gastroparesis myself. Irritated because I never heard of it before. Not diabetic. I’m the idiopathic that stays miserable because everything makes me miserable. Trying to get second opinion at Mayo very soon.


abracadebra
@abracadebra

Posts: 1
Joined: Feb 17, 2013
Posted by @abracadebra, Feb 17, 2013

taking pain meds on a long term basis will damage the vagus nerve of the stomach that moves the food out of the stomach into the intestines.I’m a type 2 diabetic and have a severe case of gastroparesis that I’ve been dealing with for almost 2 years.I’m also a chronic pain patient with 3 ruptured discs and nerve damage to my left leg.Was on lots of heavy-duty painkillers for years, now on pain pump. Trouble is the damage cannot be undone.Avoid pain meds if at all possible-I know,my pain is horrible,too.I have to get pain shots in my iv when I give in and go to the ER.But even the regular meds that I take daily don’t dissolve anyway and just come back up whole when I throw up.Good luck,my friend.


xanabanana8204x
@xanabanana8204x

Posts: 1
Joined: May 19, 2013
Posted by @xanabanana8204x, May 19, 2013

ive had gp for about 4 years now, ive been on zofran reglan hyoscimine belladonna donnatal pantaprazole and other medications i cant think of right now. i have yet to find a medicine that actually makes my nausea tolerable so i kept researching and read that marijuana can help subside the nausea; i know theres various opinions on the medical use of thc but i decided to try it and its been working better then any nausea medicine ive been on. some doctors have told me exessive use may cause nausea but i dont use it exessively. seems to work its magic basically everytime i smoke even in mornings when nausea is at its worse


Carmiejoe
@carmiejoe

Posts: 1
Joined: Mar 12, 2012
Posted by @carmiejoe, Mar 12, 2012

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!


CCOSCI
@ccosci

Posts: 5
Joined: Apr 07, 2012
Posted by @ccosci, Apr 7, 2012

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.


clemlaa
@clemlaa

Posts: 26
Joined: Aug 18, 2016
Posted by @clemlaa, Aug 20, 2016

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

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