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 🙁

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

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Hi @tross,

Welcome to Connect. I moved your discussion and combined it with this existing discussion, as I thought it would be beneficial for you to meet with the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones’ experiences.

We have a few other discussions that might interest you:
https://connect.mayoclinic.org/discussion/gastroparesis/
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/gastroparesis-diet-guidelines-1/

@tross, have you been diagnosed with gastroparesis? How are you coping with the symptoms?

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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

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Sorry if that was a repeat intro, but I didn't see my earlier post. Tracy

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I am 28 years old and have severe stomach issues, severe pain after eating and even drinking, I have pain even when I do not eat but it's not as bad ( this makes me not want to eat), I get diahrea a lot and neasia but thankfully have only really had a few days of vomiting although I don't constantly feel like I am going to throw up. I am still waiting to see what's going on with me but Google says that my symptoms match this disease I just wish doctor's would figure it out

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Dx of mild to moderate gastroparesis many years ago and have learned to live with it. Also have a chronic cardiac condition. Have taken meds for both conditions for years. Past problems with beta blockers for the heart issues, but so long ago that don't specifically recall the problems.. New cardiologist has me trying again with the beta blockers. Any experience/info about beta blockers and impact on gastroparesis would be appreciated.

Alan

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Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

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@kanaazpereira

Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

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Yes, I am concerned about impact of beta blockers on my digestive function. Past problems with the beta blockers and stomach upset, but current cardiologist is trying it again with me. Feel like it has increased my gastroparesis problem. Thus, interested in hearing from others before revisiting the cardiologist..

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I have been dealing with IBS for 20 years now and have finally gotten thru to my Dr. that something other than "stress" is causing my IBS so he ordered a CT scan and a gastric emptying study along with a SIBO test (which I ended up not having to do). I was diagnosed with mild gastroparesis..finally I'm not crazy and no, my stomach does not digest food normally!! While we were waiting to have the study done my Dr. suggested the low fodmap diet to calm down the severe symptoms I was experiencing at that time. Amazing results!!! Still have mild stomach pain, bloating and nausea after eating but nowhere near the severity as before, plus I have lost almost 25 lbs in 3 months and blood pressure is way down. I'm a breast cancer survivor and have had chronic left chest pain for 10 years and that is totally gone now that the inflamation from my abdomen in that area has subsided. After my diagnosis, I was given a new diet to follow for gastroparesis that has things on it that were not allowed on the low fodmap diet (ie. canned peaches & pears in syrup, applesauce,toast) so I'm trying to come up with a balance on my own which also includes smaller meals. I'm one of the odd GP patients as I am NOT diabetic, take NO medications at all (55 yrs old), have never had stomach surgery so who knows why I've been chosen to deal with gastroparesis! with all the recipes on Pinterest I've found the low fodmap diet works the best and there really is some tasty food that I can eat. I have to go easier on the butter and oils than some recipes state but cutting out all dairy, gluten and fruits and veges that ferment in my stomach have made an amazing difference in how I feel 🙂 Good luck!

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Look into MALS-on Facebook and research

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My test showed mild GP with severe symptoms i couldn't take the meds so I'm dealing w pain mostly

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@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

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What do u do for constipation

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@cookiegnias

What do u do for constipation

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I use Sundown Natural Fiber Gummies with Vit D3 and ducosate. Also, make sure you are active… walking daily. Hope this helps 🙂

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@lring

I have been dealing with IBS for 20 years now and have finally gotten thru to my Dr. that something other than "stress" is causing my IBS so he ordered a CT scan and a gastric emptying study along with a SIBO test (which I ended up not having to do). I was diagnosed with mild gastroparesis..finally I'm not crazy and no, my stomach does not digest food normally!! While we were waiting to have the study done my Dr. suggested the low fodmap diet to calm down the severe symptoms I was experiencing at that time. Amazing results!!! Still have mild stomach pain, bloating and nausea after eating but nowhere near the severity as before, plus I have lost almost 25 lbs in 3 months and blood pressure is way down. I'm a breast cancer survivor and have had chronic left chest pain for 10 years and that is totally gone now that the inflamation from my abdomen in that area has subsided. After my diagnosis, I was given a new diet to follow for gastroparesis that has things on it that were not allowed on the low fodmap diet (ie. canned peaches & pears in syrup, applesauce,toast) so I'm trying to come up with a balance on my own which also includes smaller meals. I'm one of the odd GP patients as I am NOT diabetic, take NO medications at all (55 yrs old), have never had stomach surgery so who knows why I've been chosen to deal with gastroparesis! with all the recipes on Pinterest I've found the low fodmap diet works the best and there really is some tasty food that I can eat. I have to go easier on the butter and oils than some recipes state but cutting out all dairy, gluten and fruits and veges that ferment in my stomach have made an amazing difference in how I feel 🙂 Good luck!

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Never used Pinterest for recipes – GREAT idea! Thank you.

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@lring

I have been dealing with IBS for 20 years now and have finally gotten thru to my Dr. that something other than "stress" is causing my IBS so he ordered a CT scan and a gastric emptying study along with a SIBO test (which I ended up not having to do). I was diagnosed with mild gastroparesis..finally I'm not crazy and no, my stomach does not digest food normally!! While we were waiting to have the study done my Dr. suggested the low fodmap diet to calm down the severe symptoms I was experiencing at that time. Amazing results!!! Still have mild stomach pain, bloating and nausea after eating but nowhere near the severity as before, plus I have lost almost 25 lbs in 3 months and blood pressure is way down. I'm a breast cancer survivor and have had chronic left chest pain for 10 years and that is totally gone now that the inflamation from my abdomen in that area has subsided. After my diagnosis, I was given a new diet to follow for gastroparesis that has things on it that were not allowed on the low fodmap diet (ie. canned peaches & pears in syrup, applesauce,toast) so I'm trying to come up with a balance on my own which also includes smaller meals. I'm one of the odd GP patients as I am NOT diabetic, take NO medications at all (55 yrs old), have never had stomach surgery so who knows why I've been chosen to deal with gastroparesis! with all the recipes on Pinterest I've found the low fodmap diet works the best and there really is some tasty food that I can eat. I have to go easier on the butter and oils than some recipes state but cutting out all dairy, gluten and fruits and veges that ferment in my stomach have made an amazing difference in how I feel 🙂 Good luck!

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@iring. I have just diagnosed myself as having IBS. I thought it was a lactose intolerance, and that is definitely a trigger, but even when I avoid lactose scrupulously I still sometimes have problems.
I am going to make an appointment with a gastroenterologist, but in the meantime, is gastroparesis related to IBS? I do not have any nausea, I just have a problem after eating dairy, and some other unidentified trigger, primarily diarrhea and mild stomach upset.
It really makes life sort of difficult as I’m sure you know. At times I don’t want to leave the house.
The gastro I would like to go to is scheduling in October at this point so I may try to find a different one.
JK

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